Making It Up As I Go Along

Unselfishness

2011-10-30T06:19:00.000-07:00

I'm here in Birmingham with Dan. She was discharged from the hospital on Thursday, but we have determined it was probably too soon. Dan takes courses online, and she had scheduled a proctor to administer her Psychology exam on Friday. And, even though I told her we could just reschedule, she insisted that she be discharged so she could go take her test. I can't even begin to tell you how much I admire the kid. She's not asking for any special treatment. No extended time, no reduced requirements, no fussing over her...

However, once she got home on her own, she began feeling extremely nauseous. She is on a rigorous I.V. and treatment schedule, so the routine has been rough. It's hard to care for yourself when you are sick and, well, unable to care for yourself. So, I rocketed up on Friday night, leaving Micah behind for the rest of the family to care for while I came up to help Dan. I'm glad to do it. In fact, I already asked for Monday off so I can help her get settled in the hospital again if that is what she needs.

Tiffany and Jason, Dan's long-time friends, are here visiting from MSU. We have had a nice, low-key visit. I know Dan has felt bad for not being able to really spend a lot of time and enjoy them. It's hard to do when you are throwing up in a trashcan trying, at the same time, to keep your oxygen flowing freely. But, Tiff and Jason have been great sports, and we have made the best of it.

The thing I was thinking about this morning is how much richer my life is because of cystic fibrosis. (Just so the Universe is clear, though, I am entirely open to a burning bush kind of miracle in which the girls are completely healed of all symptoms and go whistling off into the sunset to live happily ever after.) Cystic fibrosis has made me think about what it means to be unselfish. It also helps me to reflect on how some of my most selfish times with CF have been during hospital stays and times when the outside world looks on projecting that I am the most unselfish Mom in the whole world.

There are moments with this whole journey when I am so sad. Usually when I drive away from Streetman Circle in Birmingham, the tears start and I'm unable to contain my sobbing. There are other moments too. Yesterday, Tiffany, Jason and I went to Wal-Mart and Tiff was telling me all about how she searched for a cat costume for Dan. Tiffany didn't know it because I was driving along with my sunglasses on, but my throat got tight and my eyes started to burn with that lurking sadness threatening to overtake me.

However, the thing I have really learned is to look at the sadness before it invades to figure out where it is coming from. There are so many times when I realize the sadness stems from a deep-seated selfishness. When I leave her behind in Birmingham my sadness sometimes comes from the thoughts: I love her. I miss her. I want her home with us. This isn't fair. I'm not sure how much longer I can do this. If you'll notice, all those thoughts are riddled with "I". Focusing on me has not brought me any solace, peace or happiness, generally. Unless I am able to find a way to focus on my gratitude in the situation instead of what I have lost or what I am afraid of losing.

Sometimes, though, my sadness is not about me. It is about true empathy, compassion and love for my child. And, probably if I give myself a break, my sadness is usually an intermingling of a focus on my losses and fears and a true sadness for my child. The sadness I felt yesterday when Tiffany was telling me about searching for a Halloween costume was just because I want so much for her to experience the joy of Halloween parties and dancing and living a care-free life at college like all of her friends. And, while my sadness doesn't stem from a selfish place, it doesn't help our situation in the moment.

So, in moments when the sadness looms, I have to turn my eyes to God and say, "Thank you." God is all-loving, all powerful, omnipotent and Good all the time. When I remember the nature of God, I can rest in the perceived difficulties of our circumstances. Thank you, God, for a husband and parents who are able to care for my three-year-old. Thank you, God, that I have such a tremendous young woman in Danielle who is blessed with a positive outlook and spirit of overcoming. Thank you, God, for Danielle's friends who love her and visit her regardless of what she is able to do. Thank you, God, for my friends who listen, never really knowing what to say, but always providing strong support upon which I can lean. Thank you, God, for Danielle and Sarah's dad who has become CF Dad Extraordinaire in his own right. Thank you, God, for healing Danielle in your perfect way. Thank you, God, for taking care of Sarah and watching over her health. Thank you, God, for Micah who provides love and laughter to our family. Thank you, God, for this life that was perfectly designed for me to bring me the most love, the most joy and the most blessings of any other life I could have had.

Things are Never What They Seem

2011-09-23T19:31:00.000-07:00

I thought I would have so much more time to write when I got this new job. Visions of no lesson plans, free time and leaving concerns about children at school nestled into my brain. The problem with all that freedom is that I took myself with me to my new job.

Those visions of no lesson plans didn't really pan out because I taught a class on Emergent Reading Strategies for the past three weeks. Given that teachers were required to take something and they chose my class, I felt a big responsibility to make it informative, helpful and practical. It was a great class, though, and I learned a lot from the teachers. Hopefully, they took away some tips and strategies to help children learn to read, as well.

Free time? Hmm... Well, we visited Dan earlier in the month for Labor Day weekend. It is so weird to realize that she has been living in Birmingham for over a year now waiting for lungs. And, she is a trooper. She takes each day as it comes. She is exercising daily. Most of all though, she defines hope, faith and love. We talk every night on Facetime (SO much better than Skype).

Sarah has gotten sick recently, and she is currently in the hospital. Hospital stays are easier with Sarah in some ways and harder in others. Generally, she doesn't want anyone hovering over her and staying with her in the hospital. But, emotionally it is rough for her. She is moody and dissatisfied and pretty much annoyed throughout her stay. As CF Mom Extraordinaire I feel a responsibility to help make it better. And, I can't. Learning to live with grace and dignity in the face of formidable odds is difficult for many adults I know, much less a 16-year-old kid who just broke up with her boyfriend of nearly three years. Still, I know that she is in good hands, and while she isn't happy to be in the hospital, Sarah doesn't know how to slow down outside of the hospital, and she needs to focus completely on her health for now.

Micah is three. Three. Years. Old. She's brilliant, funny and active and she makes the world go round in our family. Our own personal sun. Giving her the attention she needs is probably the most important thing to everyone in the family. I have been amazed at how quickly the time goes, and I don't want to waste a moment.

Dave is pursuing his Doctorate. He keeps telling me he will require me to call him "Dr. Dave" when he completes his degree. He still keeps everything going most of the time and serves as my rock. Dave commands the world to be quiet for a while so I can take a breath, look around and realize that it will all be O.K.

Finally, those carefree evenings of a mind unfettered by concerns over children... I'm still waiting for those evenings. Even though I'm not in the classroom directly this year, I haven't stopped loving kids. I take it to heart when my parents (for non-teachers I'm not referring to Mom and J.R., I'm talking about students' parents) are dissatisfied about their children's education. Some kids are hungry, and they only eat at school. Some kids are badly behaved leaving me to wonder what is happening when they leave the protection of school. Some kids are mentally or emotionally unstable. Some kids have to be removed from their homes when their parents have engaged in abuse. And, there are more of them. Their faces follow me home at night. I lay my head down, pray and meditate that God protects the children in my path. I ask that I can, in some small way, help bring peace to the kids I serve.

Still, living life as it presents itself is such a great blessing to me. The opportunities I have been given, and the people with whom I have been gifted have evoked waves upon waves of gratitude. Taking each day one step at a time is a challenge, but one that is wholly mine. And, little by little I'm learning to look past appearances, be kind to myself and take time to look around so that I don't miss the experience. Life is a joy, and I hope I can always see past the rubbish to the treasures that lie beneath.

Looking Through a Lens of Love...

2011-08-07T08:25:00.000-07:00

Yesterday, PBS was playing in my living room, as it often is on a Saturday morning. After Thomas the Tank, PBS launched a fund-raising program with Wayne Dyer. Well, I happen to love Wayne Dyer, so much to Micah's chagrin, I stayed tuned. Sponge Bob was not forthcoming. Although, if I am in the right mood, I can ferret out some little spiritual tidbits from Sponge Bob too, but Wayne Dyer requires less reach. The program was about giving up excuses, but in his way, Dyer always lands on those simple, Universal Truths that really seem to resonate with me.

In the course of the program, he stated that there are really only two emotions: fear and love. I have heard this before in a different context, but being reminded is never a bad thing. I was left with some personal reflection about how all the suffering I endure is simply because I am approaching a situation from a place of fear, rather than a place of Love. And, I can pretty much apply it to anything... Mom always says, "Anger is fear with teeth in it." Thus, even in some of my more righteously indignant quests like student advocacy or protesting inequities, I'm still coming from a place of fear, even though the cause may be noble.

However, I truly believe people can change... All people. Including myself. I can turn a situation around and choose to come from a place of Love. Sometimes it just takes me longer to get there. Generally, when I have suffered enough, I choose Love. And, Love helps me see things through a different lens. It leads me to compassion, empathy and hope, even for those who don't "deserve" it. Even for people who have directly "wronged" me... Even in situations that seem awful. Love changes everything. Love (God) means it all for good. And, when I can remember that, I feel SO much better. Actually, I AM so much better.

Bored with My Own Drama

2011-06-09T19:09:00.000-07:00

I haven't posted anything here since "The Call". I have been writing other things and was busy with the end of school, etc., etc... But, mainly, I have gotten bored with my own drama. Dan became really sick in May and was hospitalized for nearly three weeks. She got a stomach virus that rolled into a full-blown lung infection complete with coughing up what appeared to be bits of tissue. (Yes, you've heard the phrase, "coughing up a lung"... Well, apparently, it's true. Not just a figure of speech.)

She was released from the hospital without truly being well and was hospitalized approximately two weeks later for decrease in lung function. However, she was discharged yesterday, on her Grammy's birthday, and is feeling so much better. My parents are going up tomorrow to visit for the weekend and Dave, Sarah, Micah and I will follow up with a visit next week.

I know everyone wants to know how she is doing and probably checks Caring Bridge, which I have also woefully neglected, but right now I am just weary. Weary of talking about it. Weary of living it. Weary of feeling it. Not every day. Not all the time. But, often. Often I just don't want to talk about how Dan is doing. She needs lungs. She struggles to breathe. And, it hurts my heart to watch her.

At the same time, I refuse to live a sad, sorry life. Screw that. Our last visit, we packed up the oxygen tanks, rented a pontoon boat and cruised Lake Purdy in Birmingham. Our next visit we plan to go to the Birmingham Zoo. But, how is she doing? Well, she can't walk up the driveway at her dad's house because he has a huge hill. We push her in a wheelchair for walks longer than a few hundred yards and she uses the little motorized shopping cart at Target. When she is really winded, she has to work so hard just to shower that sometimes she is sweating so bad after the exertion that she could really turn around and shower again. And, she misses her friends. She doesn't really have the opportunity to get out and meet friends her own age because it is a little hard to be a beautiful, blond bombshell sporting an oxygen canula and with an oxygen tank in tow. (Don't get me wrong, though... She totally rocks the look.) And, she smiles and tells me every day that she is 'fine'... Always fine.

So, I'm humbled. I stand in the shadow of her greatness and try to be worthy of being her mom. I walk around emotionally torn in half all the time. A part of my heart lives in Birmingham with her while I try desperately not to neglect Sarah, Micah and Dave by becoming mired in fear about Dan. I have moments of such faith and trust in God, I shock myself.

Still, I miss her. If CF hadn't ravaged her lungs like it did, she would be attending our local community college, working a little job somewhere, and enjoying time with friends. She would have a boyfriend (if she wanted one). Her life would look very different.

I have moments of righteous indignation when I am so angry about the injustice of it all. But, then I remember I can't afford to be angry. I don't want to waste time being angry. I don't want to waste time being sad or feeling sorry. Life is too short. So, I take a deep breath. I breathe thinking of Dan... Sending loving intent in that breath to her new lungs that are still walking around in the world... And, I go back to feeling grateful that I have a wonderful, beautiful nearly 19-year-old daughter who is strong and competent. I have a spunky, witty nearly 16-year-old daughter managing to go forward and live life with fervor even though she has CF too. I have an incredibly smart, loquacious nearly 3-year-old who makes us all smile and laugh with joy in the moment. And, I have a supportive, attentive husband with whom to share it all. My family and friends are the best.

Thus, I am grateful in this moment, but overall I just get tired of the play-by-play. We are doing O.K. I'm sorry for not posting more regularly. But, when I'm scared, I'd just rather not say so. When I'm sad, I'd just rather let it pass. I'd rather embrace the joy of life and bask in the sunlight of the spirit as it graces our lives. Thank you so much for caring. Thanks for asking. Thanks for praying. And, thanks for your love.

April 18th- The Call

2011-04-27T11:27:00.000-07:00

Last week was Spring Break. We had gone to the McWane Science Center in downtown Birmingham. It is a great little children's museum right around the corner from UAB, and we decided to take Micah. Just being with Micah and watching her explore is fun for the rest of us. She gets so excited, and I'm reminded about all the wonder of the world when I look through Micah's eyes for a little while. We were sitting in an iMax movie about saving baby elephants and orangutans called "Born to Be Wild".

I was imagining what my hair might look like if I were one of the women in the movie... Living in the jungle or on the dry plains with no hair products... It would be frizz city. Although, Argon oil is supposed to come from one special tree somewhere in Africa. Maybe I could get the oil directly from the source...

Suddenly, I was jerked from my hair revery when Dave leaned over and whispered, "We have to go. Dan just got a call."

It was about 3:15 in the afternoon. Somehow, we scrambled around and staggered out of the theater into the hall. Micah began jumping up and down saying, "Yay! We get to go to the castle now."

Randy was in Mobile working. We had arranged to trade places over Spring Break so that Dan wouldn't be left alone at any point. I stepped away from Micah's excited squealing to call Randy. He gave me a number and instructed me to call someone named Janice.

As I hung up and called UAB, I couldn't help but feel deep down in my gut that this was really it. The only problem was that Sarah was at Disney with the band. So, any phone tree plan had to be cut. (Couldn't help the pun- sorry.) Dave called Mom, and Randy called Maxine, but that was the extent of our calling. In a way, it was kind of comforting to be in the process without the pressure of updating anything or answering any questions. Also, I knew I was protecting Sarah from worrying, which made me feel like I was doing something by not doing anything.

After breaking the news to Micah that we wouldn't be going to the castle, but to the hospital to get some new lungs for Dan, we made our way to the parking garage and drove the two blocks to UAB's parking garage. Dave parked the car with Micah, while I wheeled Dan in her wheelchair to wait in the lobby area where people pay for their parking at these machines that look like ATMs, but they are instead strictly designed for sucking money out of your account without giving you anything in return except releasing you from the parking garage. Which, upon reflection, is worth paying for...

After Dave parked the car, we plopped Micah on Dan's lap in the wheelchair and proceeded to the 5th floor where we were greeted by a large gold sign reading, "Cardiothoracic Surgery". There was no desk or any obvious place to check in, so we meandered down the hallways passing patient rooms labeled with various signs like, "Fall Risk" or "NPO" to arrive at a huge nurses' desk in the middle of the floor. A little brunette lady looked up for her computer saying, "Can I help you?"

I responded, "Yes. This is Danielle Sargent. We got a call..." She popped right up.

"Yes. We were expecting you. Come this way." We were led into a relatively large room with several uncomfortable reclining chairs each labeled with handwritten last names. "Sargent", "Dancer", "Prancer" and "Blitzen". I suppose I have no reason to protect anonymity, but something in me feels like that is the right thing to do. Plus... Who doesn't love Santa's reindeer?

Dan got settled into her designated recliner while Dave, Micah and I stood about nervously shuffling around. A young 20-something girl was sleeping in a recliner on one end of the room, while a lady who was obviously her mom chatted amiably with one of the nurses. She turned to us offering Dave her chair, but he declined saying, "No, thanks. I'm kind of keyed up at the moment."

"I understand perfectly," she nodded, "I've been there." Later, when I asked if her daughter had gotten a lung transplant, she explained that she had received a heart. I'm not certain what type of follow-up treatment she was having in the room, but once it was complete they unhooked her from the I.V., she donned a huge pair of Jackie-O sunglasses and strutted out of the room new heart and all. And, the sight of that beautiful, blond 20-something girl walking out with her shiny, brand-new heart made my heart soar with the hope and promise of everything that is possible for Dan with new lungs.

The nurses directed Dave and Micah out to a specific waiting room for families, and I went back to help Dan into the hospital gown. The nurse accessed Danielle's port and drew about eight tubes of blood. They ran all sorts of labs to make sure Dan was healthy enough for transplant and I guess to determine the best match for organs. And, we waited.

We waited until Ms. Prancer arrived. She was a tiny little lady of near 60, accompanied by a tiny little husband dressed all in black like Johnny Cash. After they were settled and blood was drawn, we had opportunity to hear bits and pieces of her transplant story, although we never really heard the name of her actual diagnosis. We learned that she had been listed for over three years and was currently double listed at UAB and Emery in Atlanta. She also revealed that she had some type of strange antibody problem that made finding a match even more difficult for her. As she explained it, there is some sort of childhood illness that everyone gets developing antibodies in a person's system. She never got the illness, so when donor lungs have this particular antibody, her system is more likely to reject the donor lungs. She explained that she raised children and grandchildren and this time in her life was supposed to be for her and her husband to enjoy.

I felt for her. Really, I did. You can't sit with someone on 10 liters of oxygen who is obviously really sick and awaiting transplant and not feel empathy. But, still the only thought coursing through my brain was, "I'm sorry for your situation, but these are Dan's lungs. You've lived so many years. You have a little husband dressed all in black sitting beside you holding your hand. You've had children. You've had grandchilren. These are Dan's lungs. I'm here. We were downtown. The situation is perfect. These are Dan's lungs."

But, the instant I thought it I prayed, "God, it seems like everything is perfect and I am so grateful for this experience no matter what... Only You know if these are Dan's lungs. Please bless these people. Bless us. Help me to accept whatever is to be. Help me to trust in Your Power and the Bigness of this Process."

A little while later Ms. Blitzen arrived with her husband. She, like Ms. Prancer, was 60 something. And, I thought, "I don't want to lose my mom at this age, but Mom would want Dan to live more than she would want lungs for herself. These are Dan's lungs. I wonder what these older patients are thinking when they look at Dan. Well, I don't really care. These are Dan's lungs."

And, in the next instant, looking at Ms. Blitzen, "God. Forgive me. Of course, I care about people. I have no idea what is supposed to happen here. Please let Your will be done. And, please help me maintain some level of serenity here."

By about 7:30 p.m. I learned that all the other patients were single lung transplant patients, while Dan needs a bi-lateral transplant. I had been out to the waiting area to update Dave, and call Randy and Mom. Dave and I decided he should go to Randy's house to pack some things for Dan and I, so that he would be ready to take Micah back for the night. He also went to get us some sandwiches since we hadn't eaten anything since lunch. (Dan, of course, was not allowed to eat anything in case she had to go into surgery.)

Mr. Dancer was the last to arrive. As it turned out, this had been his fourth call in five days. He was from Jackson, MS, and every time he got a call, he drove 3 hours and 45 minutes to get to UAB. His wife shared that he had idiopathic pulmonary fibrosis. That is the same disease listed as the cause of death on my natural father's death certificate. Dave and I had been taking turns between Dan and Micah, and he overheard the nurse talking to Mr. Dancer. He reported smoking for years and drinking regularly.

When Dave relayed the conversation to me I thought, "These are Dan's lungs. She didn't smoke. She hasn't done anything to deserve what CF has done to her body. I'm sorry for my fellow Mississippian. I feel for his wife. But, these are Dan's lungs."

And, in the next restless, tired moment, "God... Please let these be Dan's lungs. If it's Your will, please let these lungs be hers."

But, they weren't.

Dave came to relieve me while I ate my sandwich and spent a little time with Micah. She was extremely cranky and needed sleep. I waited with her in the family waiting room trying to settle her down. At about 10:30, Dave came out and said the lungs were not viable. I wasn't disappointed. I wasn't anything except tired.

So, Dave and I went back to the room with Micah in tow and watched everyone packing up to go home. We bid our fellow would-be transplant patients good-bye and packed everything up to head back to Randy's. It was about 11:30 when we finally got back to the house and into bed with a very tired Micah.

As I lay my head down at night, I felt amazingly serene. It had really seemed like it was going to be "the" time. It just seemed so right since I happened to be there. But, I was heartened by the experience. I felt relieved that I may actually have time to get to the hospital before they roll her back for surgery. And, I understand the process better. Honestly, I don't know what I was thinking before, but all I have read didn't allow the process happening on the donor's side of things to really sink into my brain. I learned that donor lungs will always come from a controlled setting in which a person is declared "brain-dead" and removed from life support. I knew someone was losing a loved one, but I guess my idea about the whole process was that someone checked a driver's license and scheduled a surgery. Instead, I now have a vision of a family member sitting by a bedside while a doctor or nurse shuts off life support. At that point, a team of doctor's descend to operate and removed the organs the donor's family has allowed. Only at that point, when one of the transplant surgeons visually looks at the lungs do we know if the lungs are viable, and if they are a match for Dan.

Those weren't Dan's lungs. But, its O.K. Her lungs are still in someone's body... A living, breathing person's body. And, I will continue to be up and down and prayerful in between the peaks and valleys.

Curiosity

2011-03-27T06:09:00.000-07:00

Dan looked at me through the computer on Skype Thursday evening and relayed the events of that afternoon. She had been scheduled to start home I.V. therapy, but the home health nurses were unable to get her port to flush. Further, she experienced burning and swelling in her chest every time they forced the plunger down on the syringe. So, even though she began insisting I didn't need to come, I packed up and made the drive to Birmingham that evening. She was admitted to the hospital through the Emergency Room, and after an x-ray and ultrasound it was determined that she needs a new port. After being completely irate and infuriated all over again at the surgeon who placed her port in the first place, I have come to accept that God has a plan. It is better this happened now than in the middle of transplant or shortly after. She will be able to get everything she needs during her surgery and after without a problem, so that is a blessing. We will need lots of prayer because she will not receive general anesthesia. That can be dangerous to her lungs at her current functions, so they will be using local anesthesia (numbing the area) and sedation drugs. UAB is very different from USA. In some ways if you've done one hospital stay, you have done them all... But, we are hospital connoisseurs. We have seen the best and the worst and everything in between. Further, Dan is no longer being seen at a Children's Hospital, so some of the differences are probably due to the fact that the adult hospital is not as familiar with dealing with parents. Still, we are adjusting and learning how to best advocate for what Dan needs. However, at UAB, we have to pay closer attention to what the doctors' orders are and what each person says with regard to her treatment, because after they leave the room, the next person coming in has no clue what has been said. I'm thinking, "Don't y'all write it down in a chart or type it in a computer... Something... Jeeze. Jot it on a post-it. Send a text. Post it to your Facebook wall." Just communicate. With all the techonology available, there is no excuse... And I will be happy to lend someone a pen. The most interesting thing this stay, though, has been all the curious sights and events in the corridor. In every hospital, there are two categories of people. (Well, three- But, the people visiting new babies don't really count.) There are the people visiting whose family members have had some sort of trauma or have had to have a surgery for something. They wander around looking tired and bewildered about the whole experience. These are the uninitiated. I don't fall into that category. And, I look upon them with envy sometimes. I imagine them going home and talking at dinner several years after the fact about the time that so-and-so was in the hospital and how horrible and traumatic it was. Then there is my category of folk. We are the initiated. We joined a club that we never wanted to join with people we didn't particularly ever want to meet. There is something different in the eyes of the initiated. When we meet each other's gaze, we simply nod to one another giving a empathetic little smile silently wishing one another well. We come and we visit. We stay and we hold hands. Sometimes we throw fits; we cry; we rest fitfully; we pray fervently... We even have moments of laughing hysterically and chatting amiably. Probably, we look somewhat the same as the uninitiated. The difference is we know this is not the last time. We know the last time is in the future, and while we would welcome the relief of not having to come back to the hospital, sometimes not coming back would mean the loss of the person we are here loving and waiting upon. So, we endure. We wander down for coffee and tell a story with our eyes that never needs to be spoken aloud. The initiated don't interest me. I feel for them, and while I occasionally have had the opportunity and sometimes privilege to learn their stories, I don't seek it. I'm not curious. I am, however, extremely curious about the stories of the uninitiated. Currently, there is a family of about 20 people who have brought pillows, blankets, sleeping bags and clothing and have set up a camp in the atrium lobby. Often you see people slumped in a chair exhausted and napping, but rarely do you see a huge family of people in jammies and nighties camping around in the lobby. It's like they are waiting for concert tickets yearning to be the first in line... And, so I wonder about their story. I'm going to church this morning, so I need to shower as to not offend my pew mates. Thanks for your support and your prayers. And, don't feel guilty for being one of the uninitiated. I hope you never need to join our club.

The Power of Encouragement

2011-03-05T06:25:00.000-08:00

We are heading up to Birmingham to visit Dan for Mardi Gras break. It will be so great to have a chance to visit. And, as most of you know, she is mondo-excited about getting a car. Before we charge out, though, I just had to take a moment to write about the power of encouragement.

This week at school, teachers presented on different chapters from the book, "Teach Like a Champion". (Note the Prezi below...) It's one of those books I wish I had read my first couple of years teaching, but it is nice to be reminded of some of the principles for successful teaching and classroom management. During one presentation offered by one of my fantastic special education colleagues, she reminded us all of the power inherent in positive praise and encouragement. Dr. Becky Bailey talks about using specific praise to build feelings of intrinsic reward for children.

When I first started teaching, (and for many years, actually), I used a token economy system of a "checkbook". My students would earn money for positive behavior, lose money for negative behaviors and shop weekly with the balance in their checkbook. It worked. However, I stopped using it after one of Jill Molli's Conscious Discipline trainings. Jill talked about setting children up for failure as adults by not teaching them positive strategies to manage upset and make choices. Essentially, my checkbook system may have subconsciously programmed children to believe, "If I do something good, I get to buy myself something..." Well, I watch that show, "Hoarders", and goodness knows I don't want to be a party to creating a compulsive shopper. But, more than that... I got what she was saying. Motivation must be intrinsic to work for a lifetime. My co-teacher also reminded of that during her presentation of "Teach Like a Champion" techniques. I'm trying to offer students lessons that will last a lifetime, not just for the year or two they call me their teacher.

I've come to believe that if something is True with a capital T, then it is true in a variety of ways, and the idea is prone to show up in all manner of media and print. I imagine it is just a little bit of Divine Wisdom inserting Itself into the universe. So, right after I heard that lesson presented at school, I received the lesson in my own life.

I have never been a "bound out of bed and great the day with enthusiasm" kind of girl. I also lost my "party all night and into the wee hours of the morning" energy of my youth some time during my 20's. However, after I began writing professionally last year, I found I had all sorts of energy. I would stay up typing late into the night, and constantly had thoughts and topics about writing racing through my head... My head still kind of works like an on-going blog, but I found my creative mind to be pretty quiet after Dave and I visited D.C. to take care of his brother's affairs upon his early alcoholism-related death. Then my grandmother died the week after, and the events of those late January-early February events left me sick with strep and physically exhausted... In short, I was back to my old, tired, pre-writing self.

Then last night I received an e-mail from the publisher of a magazine to which I am currently contributing requesting I call her. The magazine is a Mississippi Delta-based publication called By U that promotes "good deed doing" for others. Last night, when I called her she told me that a letter I had written for the magazine requesting donations for a little girl with health problems had generated a many contributions from people across the nation. She told me people were touched by my letter in a way that has prompted great monetary contributions. Essentially, God used my writing ability and By U Magazine to bring tremendous blessings to a young girl and her family. (I am attaching the letter below, and if anyone feels moved to contribute, I will find out how you can help.)

After my phone call in which I received specific praise for something I had done, my energy returned and I found myself typing well into the night. Dave and I have jokingly been calling it my "super power", but I realize now what it is... The power of encouragement sparks the "God energy" in each of us. Usually, I sign my e-mails and letters "Namaste'", which loosely translated means the Divine in me, honors the Divine in you. Well, truly, when my publisher honored the Divine in me with specific praise for a job well done, a fire was lit with the spark of encouragement.

So, I say to you on this day, "Namaste'". You have the strength within to do anything that is yours to do. Absolutely anything.

Tatyana's Story:

Dear Compassionate Friend,

Thank you for being a person who will make a difference in the life of a child. Tatyana Anderson, a 5^th grade student at Quitman County Elementary School, needs your help. Diagnosed with lupus, a debilitating chronic illness affecting the joints, muscles and most other systems of the body, she finds it difficult to manage many simple tasks. Pain and fatigue are constant companions making every day a challenge for this bright and lively young girl. However, Tatyana does not allow this condition to rule her life. She struggles to attend school and looks to life with the hopes and dreams of a little girl.

While managing lupus has been difficult for Tatyana’s family, it has not been impossible. There were constant doctor’s appointments and daily medical management to keep Tatyana functional and relatively pain-free. The family was getting by. However, in 2007, they were delivered a crushing blow. A doctor’s visit after a symptom the family believed related to lupus revealed deeper trouble. Tatyana had cancer.

Life for this beautiful, young girl with the bright and shining smile has evolved into a twisting, turning walk of faith riddled with one hardship after another. Carolyn Anderson, Tatyana’s mother, strives to provide the best possible care for her child’s medical needs while single-handedly rearing three other children still living at home. Ms. Anderson, a mother of eight and woman of great faith, looks to her church family for support and encouragement.

Tatyana’s life-saving chemo-therapy treatments attacked the cancer cells simultaneously wreaking havoc on her lupus-affected body systems. The medication that currently sustains her has created a build-up of fluid in various parts of her body and dangerously around her heart. She needs an operation to drain the fluid and relieve pressure and swelling. However, the cost of Tatyana’s daily medical care and ongoing cancer treatments alone are exorbitant. In these trying economic times the family is unable to manage the cost of surgery along with all the other expenses of caring for a chronically ill child.

Fortunately for Tatyana’s family, people like you are available and willing to help. While one of us may be unable to shower the family with financial support and blessings, all of us working together can make a difference. Your contribution will provide financial support necessary so Tatyana can receive the surgery she desperately needs while continuing to battle the illness that plagues her daily. Your donation, no matter how big or small will make a lasting impact in the life of a child.

Blessings to you,

Friends of Tatyana Anderson

2011-03-02T19:59:00.000-08:00

Copy of Teach Like a Champion: Technique 38 and 39 on Prezi

That Feeling

2011-02-21T19:15:00.000-08:00

This is my eleventh year teaching in the public school system. I taught preschool for years before that and prayed somehow that God would place me on a softer, easier path than teaching... I kept wanting to be a counselor. I would really make an excellent counselor. I have empathy and compassion sprinkled with a little bit of airy-fairy wisdom. However, the harder I tried to run away from teaching, the harder God shoved me back in with both hands. So, here I am... A teacher.

Tonight I had the privilege of watching a play called "Freak" performed by the students at our local high school... The high school Sarah currently attends... The high school that supported Dan and my entire family during one of the hardest years of my life last year... The only high school in our small town that is fed in part by students from the elementary school in which I teach. So, tonight as I watched the play about bullying and teen suicide, I fought hard to maintain my composure. You see, as the kids were strolling through the school last week to practice, ex-students asked, "Ms. Maxwell, are you coming?"

"Of course I'm coming. I can't wait."

Still, I was stunned at what terrific performances the kids offered, and more than that, I was humbled to have been personally invited by the actors. Not all of the kids were "my" students... (Meaning- they didn't all have special learning needs). But, the kids had me in their classes as the inclusion teacher... Some of them I worked with individually while some just knew me as a quirky, friendly lady who worked at school. But, I was important to them at some level.

One of the brilliant young actors said during her monologue, "I don't mean to be invisible. I just want attention. I just want to be noticed."

And, as I listened to her performing, I thought about her as a sweet, shy little girl. I hope I noticed her enough. However, even more important than the role I played in her life as a child, I am so honored to see her growing into a bright, outgoing young woman. She is the reason I teach. The other young men and women who hug me as they visit the hallways of their old elementary school are the reason I keep doing it even in the face of incredible changes and crazy testing requirements.

The kids who are with me today are going to grow up and do so many things... I'm honored to be with each of them and even more blessed to watch them grow into wonderful, productive, creative students in our community. Maybe that is why I am able to stay optimistic about the future. I'm watching the proof... When I attend a band concert, parade, play or choral concert, I can see the type of young people our school district is producing. They are my friends and neighbors. We are in it together.

On a completely different topic... We got our second call for lungs last night. After scrambling around and sending Dave out to fill the car with gas at midnight, we received a call back saying only one lung was viable. I don't know when it became O.K. with me that this is the path. I didn't want this for my sweet Dan, but I know with a certainty that courses through every cell in my body that God is with us and all is well. Acceptance and surrender are very powerful tools. No need to apologize about the false alarm... If they aren't the lungs God wants Dan to have, we don't want them. The perfect yoga lungs are out there walking around in the world, and they belong to a selfless individual who has chosen to become an organ donor.

Common Core Standards

2011-02-20T10:20:00.000-08:00

I'm not just a lone nut in the world... Read a blog from the Harvard Education Publishing Group... Thank you to Kara for sharing this with me.

Let Me Be the First to Say...

2011-02-12T04:26:00.000-08:00

When I first moved back to Mississippi, I was very sure of myself, and to be honest, a little smug. I know some of you who know me will find that hard to believe... Anyway, I remember enrolling Sarah in one of the local church preschools in the Hurley-Wade area where we were living at the time. On the first afternoon when I picked her up, I was greeted by a very pretty, very blond, very young, very frowny preschool teacher.

"Mrs. Maxwell, we have some concerns about Sarah. She won't color in the lines on her pictures."

I'm not sure now, but I can imagine I cocked my head to the side like confused puppy and said, "Huh?"

Perky teacher-girl continued... Evidently, she didn't feel the condescending, arrogant vibes I was beginning to emit. "Yes, she is more or less scribbling... We worked on it today, but if you could practice at home..."

I stared at her in disbelief and responded, "It is perfectly O.K. for Sarah to color outside of the lines at three years of age. In fact, what you are expecting her to do is somewhat developmentally inappropriate. Plus, we are sort of a 'color outside of the lines' kind of family. I want my child to be an individual. I want her to explore her own strengths, weaknesses and creativity, and I want her picture to look like she wants it to look, and I will proudly display it on the refrigerator."

Sarah only stayed at that preschool for a short while until I began working for Head Start where she attended with me. At the time, Head Start was using the 'Creative Curriculum', which was what I had been using with my preschoolers in Virginia, so this met with my nod of approval.

Fast forward only twelve short years... We have completely lost our minds in education. Is it politicians? Is it ex-teachers sitting and developing curriculum who are completely out of touch with students? Is it administrators who have been too long out of the classroom and have become mired in the legalities of it all? I don't know. But, what I do know is that part of the reason education is failing miserably is because the curriculum is completely developmentally inappropriate.

Teachers get together in small clusters in hallways and whisper about it because no one wants to be the trouble-making teacher. Plus, if teachers speak the truth about it in Mississippi, we are looked upon as if we expect less of our students than those across the nation. Well, let me just say that in Mississippi our expectations for students are just as unreasonable as those for other students across the nation. The Common Core Standards proves this fact. At first, I was excited that Mississippi had signed on for Race to the Top funding to join the rest of the country in academic expectations for our students. Then I read them. Oh [expletive]! We are in deep trouble.

Do you remember the sweet little story that rose in popularity in the 80's? "All I Really Need to Know I Learned in Kindergarten" by Robert Fulgum. Click the link and remind yourself of what Kindergarten held for children in the past. Remind yourself of the type of foundation we previously established for our students prior to setting them on the academic race course. Then, click the link and meander through the Common Core Standards for Kindergarten. Now review the work of Jean Piaget and his four stages of development: Sensory Motor (Birth-2); Pre-Operational (2-7); Concrete Operations (7-11); Formal Operations (11-Adult). Put it all together and what do you get? Developmentally inappropriate curriculum. Mind you, the curriculum is not developmentally inappropriate for every child. There are some who can and will master it, but there are countless others who will not. They won't master it not because their teachers are terrible, or the curriculum needs to be realigned vertically or horizontally, or their parents aren't supporting them, or they come from low-socio economic areas- or whatever other academic explanations we want to throw at the problem... In some cases even the fact that a student has a learning disability will not be the reason a child doesn't master the curriculum. The simple reason will be that THE CHILD ISN'T READY TO LEARN IT YET!

But, if you come out and say this in today's public school system, you are shunned. Get out the big scarlet A and hang it around my neck. We are failing because we have become stupid. With all our education, we have forgotten the basic lessons we learned about developmental stages, brain development and creating well-rounded children through a variety of lessons and experiences.

Understand this too... I don't necessarily have a problem with introducing any concepts (as long as they are ethically and morally sound) at any age. But, I have a HUGE problem with expecting mastery of the skills. I have a huge problem with expecting every Kindergarten student to "Isolate and pronounce the initial, medial vowel, and final sounds (phonemes)
in three-phoneme (consonent-vowel-consonent, or CVC) words.* (This does not include CVCs ending with /l/, /r/, or /x/.)"- (Take from the Common Core Standards- Expectations for Kindergarten Reading) when Jean Piaget tells me that Pre-Operational Stage ends loosely at the age of 7. And, I have an even greater problem insuring every Kindergartener can:

a. Capitalize appropriate words in titles.
b. Use commas in addresses.
c. Use commas and quotation marks in dialogue.
d. Form and use possessives.
e. Use conventional spelling for high-frequency
and other studied words and for adding
suffixes to base words (e.g., sitting, smiled,
cries, happiness).
(Taken from the Common Core Standards- Expectations for Kindergarten English)

We are expecting our children to master skills that we, ourselves, were not expected to master in school until we were much older and much more ready to learn those skills. It isn't fair. And, more than just being unfair and, I believe, harmful to children, it is socially irresponsible. We are on the brink of producing children without a foundation for learning. I'm outraged. I'm sad. And, I'm sick to death of the hypocrisy.

Education is failing partly because teachers are scared to stand up and say, "Wait a minute... This is wrong. I can't take a Kindergarten child who isn't potty trained, doesn't know the difference between and number and a letter, and can't write his name and teach him to "Use commas and quotations in dialogue". Well, I take that back. I can teach it, but don't you dare get angry at my student when he doesn't master it. And, don't you dare imply that my teaching is somehow inferior because my student doesn't master that skill when he is very obviously not ready for it. And, further, stop looking at my student who scored "Minimal" on your ridiculous testing instrument as somehow inferior or less than. God placed each of us here with innate value and goodness. Come out of your offices and sit down with my students, and you might just learn a lesson from them... Maybe a lesson about compassion and kindness... Maybe you will learn some of the things that Robert Fulgum asserted he learned in Kindergarten.

Merry Christmas

2010-12-25T10:07:00.000-08:00

This Christmas, I'm thankful for all of it. I'm thankful for the whir of the oxygen generator, and the fact that such miraculous equipment exists in the world... I'm thankful for an ex-husband who welcomes me, my husband, and my child into his home... I'm thankful for in-laws who stay away (even though I know they must be sad not to be with us) to protect Danielle from noxious illness germs... I'm thankful for a wonderful Christmas Eve service in a church I never would have known lest we had not embarked on the Lung Transplant Adventure... I'm thankful for sausage balls and coffee, eaten amidst the Christmas wrappings rubble, while gazing out upon a snow-covered yard. I'm thankful for a Windows 7 phone. I'm thankful for freelance writing and the prosperity it brings... I'm thankful for my husband and our soon to be 12th anniversary celebration. I'm thankful for friends who love me when I can't get off the closet floor. I'm thankful for a dad who tried his best while here on this earth. I'm thankful for my job and the laughter it brings. (A parent sent video clips of our Christmas party celebration... We were doing the funky monkey and getting the beat from our seat and my husband said, "They pay you to do this?-- You're teacher of the year?-- My God!" I'm thankful for friends who have moved away, and moved on to healthier, happier times. I'm thankful for Toy Story 3, and a Hello Kitty toothbrush. I'm thankful that Dave finally watched "A Christmas Story", and understands all the Christmas jokes he has been missing for years. I'm grateful for gay friends... (Yes, the happy and the other variety.) I'm grateful for food, family, warm clothes, sober, clear-headed thinking, and all the blessings that are mine to enjoy... Not because I deserve any of it... But, because somehow, God loves me. And, I don't get the whole "gave his only begotten son" message of Christmas, but I do fully understand the fact that truly, I don't deserve any of the blessings of my life. I am graced with all of it. And, I'm grateful that I can SEE it to be thankful for it all...

Love and Light~ Merry Christmas

Power to the Teachers

2010-11-29T18:21:00.000-08:00

I don't live for the approval of others anymore. Sometimes it is nice, but it doesn't define me. The thing I am really learning is that when I am truly reliant on a God of my understanding, I don't need anyone's approval except that of my Creator. Further, I am created in God's image and likeness, making me a perfect expression in human form.

All of that being said, I think it is important for me to really know myself and my motives. I have a good friend who tells me there is no truly selfless act. In his mind, everything has a payoff. He is far more cynical than I, but in some respects I see what he is saying... When I do something, even if it is a kind or unselfish deed, I am rewarded by an intrinsic good feeling. So, am I doing something for someone else because of the good feeling I get, or is it because I am expecting something in return?

In education, teachers are largely undervalued. Oh, don't get me wrong... People can give us plaques and wax poetic saying things like, "If you can read this, thank a teacher..." It's all true. But, we are part of a crumbling system that has been dragged through the media declaring education a miserable failure for our children. We are mandated to death by politicians who have never set foot in a classroom and dare I say-- administrators who haven't been in the classroom for a very long time. And, we are trying to dig our way out from under mounds of paperwork assigned to hold us accountable, even in the face of parents who change their phone numbers and don't give the school an up-to-date contact in the event of an emergency with their child. Frankly, it stinks. And, I understand why so many teachers are leaving the profession. I get feeling completely fed up.

However, I would encourage teachers to take your power back. To the teacher who after teaching a full day rode the bus around the neighborhood to monitor student behavior, I will say, "You did that because student behavior is important to you, and you care not only about academic achievement-(Although, you ROCK at taking kids from the bottom level and moving them up and up into better performers than anyone ever could have expected...)-but, you care about kids growing up to be good people who are able to exhibit safe and socially acceptable behavior."

To the teacher who stayed late to tutor students long after everyone else went home, I would say, "You did that because you wanted your students to really learn the material, not just pass the test."

To the teacher who went out of their way to help another teacher navigate yet another computer program even though she went to a training over the summer, but had already completely forgotten everything about it, "You did that because supporting peers and furthering the teaching profession is important to you."

My teaching friends, you are doing all of the things you do because it is the right thing, and because somewhere down in your heart there is an intrinsic reward. If you are waiting for a thank you, or even an acknowledgment of what you are doing right instead of people constantly looking for where you are falling short, keep waiting and feeling frustrated and upset. You will never be told often enough, loudly enough or forcefully enough just how important you are. This job is hard, and the fact that you have chosen to undertake it anyway speaks volumes about your character.

We are doing the things we do because we love children, and we believe in our United States educational system in which we educate all the children, not just the top performers. Let the politicians and the administrators and outright nay-sayers do whatever it is they do... It's their job. But, our job is to teach... To teach the children... And to teach the children because it is what we know is right deep in our hearts. Thus, when faced with a discouraging moment, remind yourself, you aren't doing it for them.

Lungs! The New Reality...

2010-11-13T05:38:00.000-08:00

Lungs! We got the call Thursday night (Friday morning) at 1:15 a.m. And, somehow it kicked me into a different reality. Dan has been waiting in Birmingham for three months, and has been listed for nearly four months now... So, I "knew" she was on the transplant list. A mental plan was on hold in my brain for what to do and how to do it when "the call" came. But, when I actually got the call, even though it turned out to be a false alarm, I realized my best mental planning was insufficient and needs to be revamped.

Funny, I didn't even realize I had a very specific vision about what I would do when the "the call" came. And, I knew the call could come any time day or night. But, in my vision, the circumstances of life were always the same. Everyone was always doing what they normally do, and were ready to fall into their roles toward implementing "Operation Double Lung Transplant". There were also a few things I hadn't thought about at all.

First, whenever I fantasized about "the call", my family would be in their places doing what they were supposed to be doing. So, at 1:15 a.m. on a Thursday night, Dave was supposed to be sleeping beside me, Sarah and Micah were supposed to be upstairs sleeping in their rooms, and Mom and J.R. were supposed to be sleeping next door. Since Dave was at an educational conference in Jackson and Sarah was in the hospital in Mobile, that immediately threw a wrench in the plan. Also, my sister, Micki, isn't where she is supposed to be, but she is where she needs to be and I am very proud of her for that...

Next, I had a general list of who needed calling, but I hadn't really considered "in what order"... So, Randy called me. I hung up and called Mom and J.R., and asked Mom to come over to take care of Micah. Dan had called Dave, so he called me and said he was on his way back from Jackson to get Micah. After I hung up with Dave, I called Reverend Christy. I got her voicemail, but felt better knowing everything would be held in prayer for the highest good. Then I called my friend, Kenna.

While all of the calling was taking place, I was simultaneously throwing things into my half-packed suitcase that has been in a "ready position" on my closet floor for three months. For the first month, my suitcase resided in the trunk of my car, but after a few hospitalizations with the girls I realized the "packed and ready like a pregnant person" method wasn't going to work for me... It only took about 5 minutes to pack, though, and I was ready to walk out the door within 15 minutes.

I called Dan back as I was walking out the door only to hear the tail end of the "one of the lungs was lost" conversation, and realize it was a false alarm call. Had it not been a false alarm, I would have left the house, called the 4th floor nurse's desk at USA and asked them to discharge Sarah immediately so that I could sweep through Mobile and pick her up on the way to Birmingham. Then I was going to call everyone else.

However, once it was a false alarm, I called Dave back to discover he had already checked out of the hotel and had the valet bringing his truck. (Yes, the man is quick... He had to check back in with a very disgruntled night clerk.) Then I called Kenna, but got her answering machine, so I left her a message that the lungs were a "no go".

After updating Facebook and sending Reverend Christy a message there, and updating Caring Bridge, I took half a Simply Sleep and went back to bed. Kenna called by a 4:00 a.m. to find out how and where I was, and I realized she had never gotten the message that it was a "no go", so I felt terrible that she had been up fretting and praying all night. So, next time I'll have to make sure I talk to her if it turns out to be a false alarm.

While all of the scrambling and calling helped me realize some things I needed to do... (i.e. make arrangements for the care of our animals), I was also given the substantive truth that no amount of planning and arranging is going to prepare me sufficiently for what to do in that moment. When I write lesson plans at school, the heading on my plan reads, "Lesson Plans (Not Promises)"... I note that they aren't promises because in my classroom things are opt to change at a moment's notice. I will make whatever changes I deem necessary for the good of my students in an instant. And, I suppose this has to be the same way.

I would love for the whole process to happen exactly as I envision it, wrapped up neatly with a little bow. But, when I set my own mental limitations on a process, circumstance or situation, I am cheating myself and everyone else out of an opportunity for greater Good. God happens in the unplanned. God happens in the unprepared. God happens outside of my small, insignificant designs and ideas. Don't get me wrong. I still have to plan. The dog and cats need food and water... The mail must be checked. But, I just know that whatever happens can be all the more wonderful if I am simply open to the process. Being "ready" and planning are two entirely different concepts. And, the false alarm helped me to realize that God is truly making me ready... Making us all ready for the things that are ours to do.

Creepy Crawly Guardian

2010-10-24T04:06:00.000-07:00

This summer a spider came to make its home outside my closet window. Not just any spider, mind you... A HUMONGOUS spider. She has a gold body with black stripes, and black legs with golden flecks sprinkled up and down them. We have loved her. I have a bench by the window, and Micah climbs up every morning to open the shutters and look out at the spider.

We have talked all about spiders. I have told her that spiders are arachnids, and that they have two body parts, unlike insects that have three body parts. I have also informed her of the differences in the number of legs between a spider and an insect. We have even been able to witness how she caught a fly in her web, only to find the fly mysteriously absent the following morning. (She's truly a humongous spider, so I'm not exaggerating when I say it only took the course of a day for the fly to be injested.) So, it has been educational, as well as a wonderful distraction for a busy two-year-old who loves to "do make-up" with Mom.

The web is absolutely incredible. It is so intricate in its design and covers an entire space between the eaves of the house, the window and the bushes. When we first saw it, Dave and I briefly considered getting rid of it. But, it occurred to us that in Mississippi in the heat of summer there are these horrible, large yellow flies... Yellow, biting flies to be precise. So, we quickly united in our adoption of the spider and decided to leave her alone. Our own personal guard spider...

Friday at school, a bee buzzed its way into my classroom. The kids managed to step on it, but it got stuck to a student's shoe, so I swooped in, tissue in hand, to remove it. Somehow, the stinger managed to poke through the Kleenex, and I got stung on the finger. Yes, I got stung by a dead bee. It wasn't too terribly bad, and I modeled semi-adult behavior by not falling to the floor grasping my finger while heaving in sobs... Which is kind of what I wanted to do. Ms. Leggett and Ms. Jordan (my dynamic teaching team) gave me lots of TLC, so I was able to struggle through the remainder of the day.

When I arrived home, Dave announced his plan to trim the azalea bushes out front. This is a chore he undertakes once a year in the fall, usually at Thanksgiving. This year, we will be in Birmingham for Thanksgiving, so he wanted to trim the bushes a little early. As we were talking, we both realized trimming the bushes would disturb our spider's home.

That night, somehow the two events weaved together in my brain to form a dream... Suddenly, I was alone in a large, grassy field when I noticed a swarm of bees coming. I was terrified, thinking of the swarms of African bees and how people had actually died from bee stings. I stood there absolutely frozen, watching the bees approach. As dreams have a tendency to make all things possible without the pesky interference of reality and possibility, my HUMONGOUS spider appeared and built an ENORMOUS web in front of me. The bees could not penetrate my spider's web. I was completely protected.

Later, it dawned on me this is how God works in my life. He is standing by watchful and ready to take an active part... To save me in an instant... To protect me from anything harmful. The bees of adversity cannot touch me because God is there, spinning His web of protection around me, ensuring I am safe. However, if I decide to get in there in an attempt to manage and control without first seeking guidance, I am apt to really screw it up. Like maybe managing and controlling the bushes? Thus, I'm sure if you drive by my house this afternoon, you will see perfectly manicured bushes, with the exception of one... The one outside my closet window where our own personal guard spider makes her home.

Dip

2010-10-09T04:43:00.000-07:00

Yesterday, when I arrived at work from a morning training, I was informed that one of our assistant teachers had been in an accident and may not be in Monday. Our attendance clerk told me almost as an afterthought... "Oh, Christy, by the way... I sent Ms. R. (principal) an e-mail, but Dip's husband called and said she has been in a car accident in Jacksonville and may not be in on Monday. He is on his way to Florida right now to check on her." I think I said something like, "O.K." or "Gosh, I hope she is O.K. Do we know if she is hurt?" or something equally as inane... But, I was quickly thrust into the other drama of school life and didn't really think about it again for a couple of hours.

Upon reflection, I didn't think about it because I couldn't fathom it. I couldn't imagine Dip was anything except O.K. I couldn't imagine her not being at school. Dip Johnson was an assistant teacher at my school. She worked at Singing River Elementary for nearly 30 years... Or maybe more than 30 years... No one is really certain. Dip's name was Marva, but no one called her that. She was "Dip", and we aren't sure why her husband assigned her nickname, but everyone used it because it suited her.

When I first met Dip, I had just begun my teaching career. I had been placed in a precarious position because I had been asked to document my assistant teacher's performance. I wasn't schooled in the ways of public school... And, honestly, I don't think Ms. Johnson liked me much. She always came by to offer friendly words of support to my assistant. But, I couldn't help the situation and did the best I could, trying to be fair and kind with my assessment.

My assistant teacher retired after that first year, and Dip gave me a nickname... "Mrs. Axwell"... (She didn't realize I knew she had donned the name... Or probably she didn't care.) But, the name was assigned as a warning that once someone worked as my assistant, they just might "get the ax". Be forewarned... Dip didn't trust me. But, she watched, and I think she ascertained that I just might have a heart for children. So, at some point, I became O.K. with her... And, I was welcomed into the school as One of SRE. Really I don't think I would actually fully qualify as a staff member had I never gotten Dip's unofficial stamp of approval.

Once I was deemed worthy, I was privvy to the wealth of information stored inside Dip's brain. She knew everyone, remembered everything, and was eager to share her knowledge. Some people might have thought she was a gossip, but the things she shared with me were always pertinent to my students' welfare. "Ms. Maxwell, did you see the paper? ___'s house caught fire last night..." "Ms. Maxwell, ____'s parents were arrested last night. That daddy got drunk and beat up the mama." "Ms. Maxwell, ____'s sister lost her job and had to move back in with the family. Six kids are sleeping on a mattress in the kitchen." And, I don't know how she knew it all... Further, I don't know how she kept up with all of it. But, she did. And, because of Dip, there were days I was able to better serve children because I knew the "back story".

Dip served as an assistant teacher in nearly every grade in the school at one point or another. She worked with my own children. I can't begin to tell the number of times Dip brought one of the girls to me for a treatment or just because she thought they needed a little extra care and attention. She looked out for Dan and Sarah, acting as a guardian angel ready to swoop in and deliver them if necessary.

But, lest I give the wrong impression... Dip was only soft on the underbelly. She could lecture a huge 5th grade boy until he hung his head in shame with no choice but to think of whatever "crime" he had committed and develop at least 10 ways not to do it again. Further, if she thought someone wasn't doing the right thing for a child, she would give them "up the river" or "down in the country". She was a fierce advocate for the rights of children. And, she was fearless. It didn't matter if it was the counselor, or the nurse, a teacher, or the principal... If she believed someone was not doing the right thing for a child's welfare, that person would have no question as to her thoughts on the situation.

One year, Dip became angry with me for something. I don't even remember the exact nature of my digression. We had started inclusion, and I think she didn't like something about the schedule. At any rate, she didn't speak to me for an entire school year. She continued to look out for "Sarah-Jane", as she always called her, but wouldn't speak to me at all. However, the next school year, everything was fine again, and I was accepted back into the fold.

Last year, when Dan's health was steadily declining, Ms. Johnson would see me in the hall and say, "I'm praying for those girls, Ms. Maxwell... You know I love those girls..." And, I would respond, "I know, Ms. Johnson. Thanks." There were days when I was just putting one foot in front of the other, and I just couldn't talk about Dan or her health. And, I have no doubt that Ms. Johnson acted as a silent angel on my behalf beseeching others to "let me be."

Dip Johnson was a pillar of Singing River Elementary. She will be sorely missed. However, I feel compelled to speak on her behalf... And, I don't think she would mind. Dip Johnson would not want everyone to be shrouded in mourning and darkness for long. Last week, I saw her at a table in the 5th grade hallway, working with students and helping them stay motivated to finish nine weeks exams. She did what she loved until God decided her time here is through. Don't feel sad for her. I absolutely know Dip is right now in a corner of heaven, having grabbed someone to chat... "I'm so glad to see her here in heaven... You know, I taught her mama and her brother. That family was so special... Her mama worked for the soup kitchen, helping folks after the storm..."

I would say, "Rest in peace, Dip Johnson, " but she will not rest... It was not her way. So, instead I will say, "Work feverishly and joyfully in heaven, Dip Johnson. You are needed there, and we will all get by somehow without you by honoring your memory and always, always doing the right thing for children."

It's Not Too Late- It's Never Too Late...

2010-09-19T04:27:00.000-07:00

So, I'm growing tomatoes... Just like I have always wanted to... Just like a nice gal from South Mississippi should. And, it is amazing.

Probably, as a reader you aren't really impressed by this revelation. I suppose you would have to know a little of the background. Until this experience, my thumb has been notoriously brown. My husband jokes that I am a serial killer of plants.

So, back in July after Danielle was listed, I decided I was going to celebrate life by once again planting some plants. Micah was a motivation too. In the summertime she likes to go out on the front porch and listen the the birds, watch the squirrels and see all the bugs and other facinating things making their home in our yard. My mom has instilled in her a deep love of gardening. They go out every day in the summer, and every time she gets a chance to slip over to Mimi's and trot around her garden any other time, she does it. She loves everything about it. She loves the dirt. She loves the watering. She loves caring for the plants. And, to watch my two-year-old little daughter mimic every move of my mom when she waters by gently lifting the leaves and taking such care to move about her tasks so delicately makes my heart overflow.

Much like when Dan became obsessed with Batman and Sarah needed all things Wizard of Oz, I became interested in gardening again because my child expressed such an interest. Further I have sustained more of an effort because it is important to Micah. I have always loved the idea of growing plants, but the day to day drudgery of caring for them is where I fall down. However, looking at the plants through Micah's eyes has made it less drudge and more magic. Watching her squeal and 'Ooh' as she marks the progress of our little front porch garden project has been more wonderful than I ever would have thought.

The other amazing thing is that everyone looked at me sadly and shook their heads when I told them I was planting tomatoes in July. Tried and true southern gardeners looked at me with pity for my ignorance. Everyone knows you must plant tomatoes in the spring so they can bloom and produce all summer long. However, on my trip to Lowes, the tomato plants were just calling to me. And, I thought, "No one is going to buy these now. It's past time."

My next thought in all honesty was, "Well, I'm going to give it a shot because I will probably kill them anyway and it won't make a difference if I planted them in the spring or in the summer."

So, I bought a couple of plants... One has leaves striped with white, light green, dark green and yellow. The other one is a flowering plant. (I already have two geraniums that live around the side of the house. They do very well because the trick to geraniums is neglectful care, at which I excel.) And, I bought three little abandoned-by-everyone-except-me tomato plants. Two of them I planted in the Topsy Turvy contraptions and they are currently hanging on the back porch. Neither of those have produced any tomatoes yet, and I keep hoping... But, I also planted one of the plants in a newly purchased Dollar General pot made cheaply and cleverly from some type of foam or particle board. Let's face it. I wasn't going to spend $30 on a pot to hold a dead tomato plant. I also bought some basil because everyone knows you can't have tomatoes without basil.

Micah and I set about making it happen with our little trowels and her small rake. We planted everything and went out every day to water and care for our plants. I was cheering when all of my plants were alive after two weeks and now those two weeks have turned into two months. Everyone said the plants wouldn't produce fruit because it is so hot in the summer here and they do best when they can get a break from the heat with cooler night air. I read everything I could on the internet and proceded to feed them every week with low nitrate fertilizer. I even brought my tomato plants into the house for a few nights so they could rest in the air conditioning with the rest of the family.

And, lo and behold, my potted tomato plant on the front porch has not disappointed. In fact, it has shocked and amazed me. I was just excited that I was keeping them alive. Honestly, I think Micah and I are keeping them alive.... But, to actually see real tomatoes on them is so exciting! We'll be eating fresh bruschetta in the fall...

As I crept out to the front porch this morning while it was still dark to peek at my little tomatoes, the song, "It's Never Too Late" by Three Days Grace was running through my head. The song was popular this past summer and I would hear it over and over on my tearful rides to and from Birmingham. "This world will never be what I expected... Now and again we just try to stay alive... Maybe we'll turn it all around cause it's not too late; It's never too late." My tomatoes in September prove that theory. Hope does indeed shine eternal. It's not too late. It's never too late.

A Balanced Life...

2010-08-21T04:23:00.000-07:00

I've heard it said that balance is the point some people run right past on their sprint from one extreme to the other. And, I try hard for that not to be true for me, but I'm afraid it applies sometimes. Thus, I am able to recognize the trait well in others. School districts and some other politically motivated institutions are infamous for this particular quirk of character... Not just my school district... In fact, not just school districts at all... But, it is a trend that promotes terrible stress for everyone, ultimately leading to less productivity and (I'll go out on a limb here and suggest- GASP) maybe even a decline in student achievement... The exact thing the organization was trying to "fix" in the first place.

Don't get me wrong. I am certainly no expert on how to achieve the fleeting concept of balance. I get one area clicking along, and really start to feel successful and competent, when something breaks lose in another area. Maybe that is just life. Mostly I try today to offer myself the same forgiveness and compassion for my mistakes that I generally offer to others.

Beyond that, I try to practice balance... And, practice~ just like with students~ means exactly that... Practice. Not perfection. Not mastery. Practice.

My life is very busy. And, the busy-ness of life usually serves to throw me perpetually and evermore entirely out of balance. But, I'm learning that balance isn't about sitting pristinely on the fulcrum... It is about learning to adjust myself on one side of the beam to meet whatever situations are currently resting on the other side.

Life and its expectations are consistently changing, challenging me to sort out what is most important in the moment and for the future. And, sometimes I must concede that I cannot do it all. Or, at least, I cannot do it all well. Caring for the girls' medical needs, sorting out insurance, taking care of my home, spending time with my family, teaching and devoting an "appropriate" amount of time to my job (Teaching, and all it encompasses could easily take every bit of my life if I allowed it), engaging in things I enjoy, and taking care of my body, mind and spirit... It's all a balance. And, if I devote too much time and energy to any one of them, I am neglecting something else.

Honestly, having Micah at an "advanced maternal age", and Danielle's declining lung functions helped bring more balance into my life. I really have a sense of what is important, and what is much less important. I don't want to miss any moment with my kids. Never have I regretted spending time with Dave, shopping with Sarah and Dan or playing blocks with Micah in lieu of writing lesson plans, doing laundry, or cutting out laminating. Attending church, meditating, writing, reading... All of it recharges me so I have the energy to call back yet another medical provider or insurance representative.

The other thing that I'm learning about balance is that I must remain "mentally" balanced. When people have expectations of me, I can try to meet those expectations, but if I fall short, beating myself up about my shortcomings is completely unproductive. I cannot give all of my mental energy entirely to any one endeavor. I need to be vested in whatever I am doing in that moment. And, if I am not involved in the activity in the moment, I really don't need to invest a lot of energy dwelling on it. Further, constantly feeding myself a mental barrage of all I need to do only leaves me feeling overwhelmed. Making a list, working on the things I can, and being centered in the "Now" helps me feel competent and balanced... Being in the moment generally results in my presenting my best self and conceding that I am not in control. God's in charge, and I try to work as His servant. It's the best I have to offer. And, it is sufficient!

I have friends who are currently struggling with balance, and I would offer this suggestion... "They" can't have your mind if you don't let "them". You are worthy. You are good. You are doing exactly what you need to do in the moment. If you aren't, you know that too... You don't need anyone else to tell you. Be kind to yourself. Realize you can only do the best you can... And, your best is good enough. It is all God wants from any of us.

"Evermore in this world is this marvelous balance of beauty and disgust, magnificence and rats." - Ralph Waldo Emerson

"Life is like riding a bicycle. To keep your balance, you must keep moving." - Albert Einstein

"There's no secret to balance. You just have to feel the waves." - Frank Herbert

~Namaste', my friends...

A New Kind of Gift Basket

2010-06-26T06:18:00.000-07:00

This week I finished my MAPQSL Summer Program. What's that, you ask? It is the acronym for "Mississippi Alternate Path to Quality School Leadership". That's right. Be afraid. Be very afraid... I will soon have a one-year alternate license for administration. And, after I complete my internship this school year, I will have a full-blown entry level license in administration. So, now I can administrate something. Bring it on.

People who know me have heard this and exclaim in wonder, "You want to be a principal?" Well, I if you had asked me before these three weeks, I would have replied, "Absolutely not. I would like to go into special education administration..." And, the saner part of me thinks that still might be my response, but another, more daring and adventurous part of me thinks I really could be a great building principal if I choose to accept that challenge.

Three weeks doesn't seem like a very long time to learn something, but considering I was in class EVERY day from 8:00 to 3:00 with only a 30 minute lunch, (Thanks for the strictest adherence to that tight, tight schedule, Jim and Mr. Mack :-), the learning time is pretty much equivalent to graduate level course requirements in regards to time. All that was missing was summarizing tortuously dry journal articles or creating Power Point presentations with a "collaborative group" in which two of us did all the work, and the rest of the members slacked off and stood around. I didn't miss it, frankly. And, those of you who have enrolled in college courses know what I'm talking about...

So, while my interest and passion is still primarily in the area of special education, I have perked up to the possibility of being a principal some day. I have discovered being a principal isn't necessarily everything I always thought it was... (Unclogging the toilet, and listening to teachers complain) And, I knew all the unappealing "stuff" of being a principal before I ever hit the door of my QSL class. The amazing challenge of being a principal is somehow being able to gather the collective conscious of a building, with all its personalities, strengths and challenges, and channel that energy toward a common goal. It's kind of... Well, impossible. Or is it?

I have come to understand most of administration is about implementing the mandates of law and policy... The only problem... Well, the major problem is I don't always agree with the laws and the policy. And, in administration, it's not my job to agree... It's not even my job to change it... It's only my job to implement it, and see that everyone else implements it. And, therein lies the very intriguing challenge. Can I manage to pack an old leaky carburetor, banana peels, dirty baby diapers, and an apple core in a pretty, skillfully crafted basket, wrap it delicately in cellophane, tie it off with a lovely ribbon and sell it to a highly educated group of people? That, my friends, is the true challenge in educational leadership. And, that is the thing that piques a part of me that always strives to do the impossible.

And, at some level, I think I could do it... I think I could do it because with every law, or mandate, or flat out stupid thing we are called to do in educating students, I can generally find a positive intent behind why it has come to be. One of the teachers for the class, Mr. Mack, proposes we brought No Child Left Behind on ourselves. Refusing to champion the child that doesn't learn in the standard, sit-in-your-desk-and-listen kind of way and "educating students into mental retardation" revealed a need to establish systems of accountability for student achievement. That system of accountability is completely unrealistic, and in my mind severely inappropriate for some students, but it wouldn't have been necessary if we had done the "right" thing in the first place. Make no mistake, I firmly believe in the premise of inclusion and educating our students with their peers, the people with whom they will interact for the rest of their lives.

As much as I hate it... As horrible as I think it is for children... As much as it entirely ignores the premise that each child must be recognized as a physical, mental, emotional and spiritual being and educated accordingly, the intent was to make our system fair and available to all children. So, that part of it, I can sell. As much as I hate our RTI (Response to Intervention) process, it was implemented in the spirit of seeing each child as an individual and tailoring education to that child before simply sticking them in special education so they can remain "special" for their whole lives. Special education was the Hotel California of academia... You can check out any time you like, but you can never leave.

So, now that I have been teaching in the public school system for over 10 years, I get it. I have been full cycle. I began when our first state testing was being piloted. I saw inclusion on the horizon and developed best practices in our school. I have gradually watched the population of learner served in special education change, and I have watched the struggling students remaining in general education increase... That was the point. Thus, by most accounts, No Child Left Behind has been successful.

And now, a new challenge is being born... There is a push toward moving all states toward a national curriculum. The same set of objectives and standards for all students across America. And, given that our children are going to have to be competitive in a different world than the one in which I was reared, I believe this makes sense. Technology has allowed people to connect in ways we never could have imagined even twenty years ago. But, America is funny... We strive, strive, strive to propel ourselves onward and upward, only to look back saying, "Don't make me go! We are moving too fast!" States have resisted moving toward a national curriculum, and so the government's response has been to tie it to money.

There is a program called "Race to the Top"... And, states are indeed racing. At least they are racing to get a piece of the 4.63 billion dollar pie available to school systems willing to write a grant for the money and sign onto a curriculum sight unseen. But, the curriculum is aligned to the NAEP (National Assessment of Educational Progress). So, in applying for the funds, a state is in essence agreeing to move toward a national curriculum. People around me are concerned, but secretly, I'm kind of pleased.

Living in Mississippi is different. We are a Confederate state. Whether I like it or not... And, even though the Civil War has been over for a long, long time, there is still a little bit of that rebel spirit running through the state. Folks from here have some sort of genetic imprint pumping through every fiber of their being that says, "We don't have to do what you say... We seceded from your Union." And this attitude, while I like it when it comes to things like car inspections, hinders us in so many ways keeping our population steeped in ignorance and misunderstanding. We are last in all the things that count, (i.e. education, business, health care), and first in all the things that don't (i.e. obesity, teen pregnancy).

The frustrating thing for me, personally, is the unfairness of the rest of the United State's perception of us. I hate that people think of Mississippians as backwards rednecks with no shoes or teeth who bathe only once a week. And, I hate it because that isn't my experience. Well, it isn't entirely my experience... My family is from Ovett, after all... Some of the smartest, most forward thinking, innovative individuals come from Mississippi, and guess what? They were educated here. But, moving toward a national curriculum might just be one of the ingredients lessening the percentage of infant mortality, improving the number of high school graduates, decreasing the number of teen pregnancies. I don't know for sure... But, I think I could sell the idea.

Don't misunderstand me... I know it will get muddled. I know it will be mandated to death, and more accountability standards will be shoved down our throats. But, ultimately, when almost everyone I know in education signed on because they have a passion for children and because they want to see our students able to compete in a new, close-knit, global economy, I think I can embrace that vision and move a group of teachers toward that. So, maybe... Just maybe one day I will decide to take on a principal's job. I like that the word, "administration" includes the root "minister", meaning "to give".

Thus, I think I really could "give" something if I can only manage to believe in it as something good for children. And, who knows? Maybe that all just boils down to acceptance and perception. A very wise gentleman once said, "Nothing, absolutely nothing happens in God's world by mistake." I have found that to be true in everything from education to double lung transplant processes. God can use it all for good, and I can just show up and offer to give and minister. Maybe that is the best way to think of it, rather than selling a basket of crap I don't really believe in... Showing up to "administer" knowledge, kindness, and goodness to any group of people can always be a good thing.

Life in a Tank Top

2010-06-12T07:10:00.000-07:00

It's been a while since I have updated my Blog. I have updated Dan's CaringBridge. I have updated my Facebook. I have updated via e-mail. I have updated via text message, actual phone calls, and even face to face... But, my Blog. Well, it has been neglected and somewhat abandoned. My Blog is more like a time for reflection. And, I haven't wanted to reflect. I have only wanted to keep my head down and keep moving forward one step at a time. This morning, though, seemed like a time ripe with bloggable thoughts and opportunity to write. So, here I am.

Currently, Dan and I are sitting in USA Women and Children's in Mobile. Sarah was just discharged yesterday. The girls' lung functions had both dipped down, and Dr. Sindel deemed it necessary to get them both in, treat them with antibiotics, and make them well once and for all. Well, "once and for all" for now, anyway. There really is no such thing as "once and for all" with CF.

Lately, I have been in really a pretty good place... "Place" meaning that emotional, mental and spiritual place that isn't really a location at all, but is probably far more important to how well a person functions than any physical location could ever be. I took about three months after Dr. Hoover told us Dan would need a bi-lateral lung transplant to completely fall apart. I was basically just going through the motions of everything, and felt like I was walking around in a fog. We were still going back and forth to Birmingham regularly for Dan's hospitalizations, and she was SO sick. Much of the time, even though I never voiced the fear, I thought I was watching my child die before my eyes. And, I kept praying, and crying and pleading with God... Please. I'm not ready. I didn't count on this. It wasn't supposed to happen when she was only 17.

Further, I had helped care for my dad over the summer after his diagnosis of colon cancer. Dad died after Thanksgiving. My relationship with my dad was atypical, but sadness and loss hung over every aspect of life. I felt as if someone had turned me inside-out leaving my tissue and organs exposed to the elements. I hurt. And, I hurt all the time. And, I wasn't sure how to keep going.

I was also angry and driven by ten thousand forms of powerlessness. Our lives had been precariously balanced with treatments and therapies. For the girls' whole lives I had ensured treatments and medications were taken faithfully. We balanced that with extra curricular activities, school functions, family vacations, church and anything else people cram into a life together loving each other. And, everything was punctuated with hospitalizations and at-home I.V. meds. I did all the stuff. I was a good CF mom and I believed that my reward should be simple. My kids should live. And, they should live without a constant thought of dying. However, that was no longer the reality.

But then, time kept passing, and Dan kept living, and even though she was sick, I realized I was wasting time. I was wasting time being sad and sorry and begging God, so I had to shake myself or slap myself or something and get back to the business of living happily in this new reality of life. Dan was perfectly accepting of her medical situation, and approached everything with a completely positive outlook. I, however, had not fared so well. I burst into tears regularly, and friends weren't quite sure how to deal with me. In fact, many of my relationships changed signficantly too. My best friends couldn't make it better, so they stood by looking down at the ground and turning their toes in the sand. They were there whenever I couldn't get up off the closet floor, or when the oxygen bottles clanked together in the back of the car causing me to fall into hysterics. They were there when I was driving down the highway crying hysterically while listening to Bulgarian politics on public radio. But, no one knew how to comfort me, and my pain hurt them too.

So, the B team of friends took over. People I wasn't particularly close to, starting doing for me things I could not do for myself. And all of a sudden, the B Team was the A team, and I was left wondering, "What happened? Life is totally different." And, for a while, I was mourning. I was mourning all the change. My friends and family merged into one big team, and I am forever grateful for the support everyone has offered. Many of my support systems are different. My Weight Watchers meeting closed, my church closed, and my principal and friend got promoted. But, I've made peace with all of that. I'm adapting.

Now, it's June. It has been eight months. And, I feel better. I'm not the same. Not at all. But, I'm better. No longer do I hear The Script on the radio and burst into tears... "I'm still alive, but I'm barely breathing. Pray to a God that I don't believe in. Now I've got time while she's got freedom. When the heart breaks, no it don't break even.... I'm falling to pieces." The song is about a romantic break up, but when Danny O' Donoghue (lead singer) belted, "I'm falling to pieces," I was right there with him.

Everywhere we go, people stare. Sarah gets aggravated, but I don't mind. Dan doesn't seem to mind either. It is odd to see a beautiful, otherwise healthy young girl pulling an oxygen tank. We are thinking of having cards printed saying, "Give to the Cystic Fibrosis Foundation" to give to the people who really stare openly. But, no longer am I mourning the loss of my child before she is gone. I think the realization about what I was doing to myself came when I watched Jared Lawrence, Dan's prom date, back down the driveway with her perched on the front seat of his truck sporting her oxygen canula in a formal gown. Tears were streaming down my face as I thanked God that she made it. She made it to prom. And, as wonderful as that was, I thought of other families without kids with CF, who were perfectly healthy who had lost children in a tragic accident. Those parents did not get to watch their beautiful daughters going to Senior Prom. Those parents didn't have the opportunity before-hand to dread the death of their son or daughter. It was simply over. And, given that death has showed up simply hovering over our lives, it could be an opportunity. And opportunity to love more, to do everything, to live without regret... An opportunity that others don't always get. And, I wasn't going to waste another moment.

In that spirit, we are sneaking out of the hospital. Dan is waiting and Old Navy is having a sale on tank tops for $2.00 each. Life awaits. And, we will be living it wearing layered tanks with a smile on our faces, dragging an oxygen generator behind.

Spring Break

2010-03-30T06:52:00.000-07:00

Spring Break has started off with a bang. I engaged in a hair color experiment that went seriously awry, and thankfully, I have a week before going back to school to sort it out. Although, looking like an Easter egg during the Easter season isn't so bad, really...

Then I developed a cold or something. I have felt miserable for two days running fever off and on. And, even though I feel bad, I hesitate to complain because I know that my girls can trump my silly little health complaints any day of the week. But, it is hard to keep going with everything that needs doing when I am feeling less than my best.

And, finally, yesterday I went to the plastic surgeon's office and had two cysts removed that had developed in the corners of my eyes. After 3 hours of waiting and 5 minutes of surgery, I am cyst-free!

So, today I look like a sick, sniffly Easter-Egg Headed lady who lost a prize fight, but it is all good. I'm just grateful to be home and to have Dan home. Sarah is out with friends, but maybe we will all be able to get together and head out for a little adventure.

Peeing My Pants

2010-03-12T18:53:00.000-08:00

Dan is shake, shake, shaking in her vest. We are in the hospital in Birmingham just vegging out and watching mindless television. She hasn't felt well today, and even began running a bit of a fever this afternoon. Generally, she is better than this after she has been on I.V. antibiotics for more than a week. I know she is frustrated. She wants to feel well. And, I want her to feel well.

I was supposed to come home today, but stayed an extra day. (That seems to be a recurring theme, since that is what happened during my last visit.) But, it's okay. I love my beautiful Dan-Dan and it is an honor to be here with her, shivering in my jacket since she keeps the room like an icebox. I love the Mom-Job. And, most of the time, we have fun together. Even in the hospital... Even with things like lung transplants, and weight gain requirements, and strange fungal infections looming over us.

But, honestly, I don't want to talk about sad CF stuff today. Sometimes I get sick to death of my own drama. I just want to take a commercial break from worrying about Dan's CF stuff, worrying about Sarah and how she is handling her sister's recent turn of events, worrying about how all of this could possibly affect Micah, considering if I am living as a faithful Child of God, and beating myself up for feeling as if I am unraveling at the seams part of the time. So, for the remainder of the time I am typing this post, typical CF fodder is off limits. Instead, I want to focus on some of the more curious and amusing aspects of this life we lead.

The other night, Mom and I were driving up to Birmingham in a torrential downpour. I mean, the water was coming down in buckets. J.R. was following behind us. (Truthfully, I had been upset earlier, so Mom didn't trust me to drive up on my own, so she was guarding me from the passenger seat.) And, I was entertaining her with funny stories about my kids at school. We were laughing, and driving slowly and carefully to navigate the weather. I could only see a few feet in front of me, until lightening flashed intermittently, briefly lighting up the highway and the surrounding woodsy tree-lines stretches of nothing that line I-65. We had planned to travel up because Dan was scheduled to have a G-tube surgery, but the surgery got cancelled and we still wanted to make the trip up to visit. So, I packed my little rolling hospital suitcase, my oversized comfy pillow, and 12 small bottles of oxygen. I packed the oxygen with the plan of giving it to Grammy and Grampy so they can bring Dan home when she is discharged from the hospital.

Now, I'm not sure if the general public is aware, but oxygen is flammable... And, those bottles are kind of dangerous. When instructed on the use of oxygen, one is taught a lot of safety rules about correct procedures for handling oxygen safely. In fact, during the training session, the words "potential missile" and "explosion" were clearly mentioned. Now, initially, it freaked me out. But, now... We're kind of pros. We just chuck those bottles in the back and move on down the road.

But, driving down the road in the torrential rain, with lightening flashing and thunder rolling, I had an acute awareness of the oxygen bottles resting in a duffle bag in the trunk of the car. And, imagine my keen, spine tingling, hair-standing-on-end experience, when a fire ball fell from the sky probably twenty-five feet to the right of the car... My little, red Jetta careening down the road with me driving and Mom in the passenger seat carrying twelve little potential missile-like projectiles with the ability to explode and kill or maim us all, and maybe even some innocent travelers navigating that same stretch of I-65 on that rainy, dreary night. Well, holy cow, Batman! That was something to consider.

I picked up the cell phone and exclaimed to my dad, J.R., "Did you see that?"

He replied, "Yep! I just peed my pants!"

And, it was a pee-your-pants kind of moment. I have never been that close to lightening in my life. It was amazing and scary and comical. Recently, I spend more time than I would care to admit thinking about life and death as it relates to me. I spend more time than I would care to admit thinking about living life as it is, and living life after the scary, miraculous lung transplant for my daughter. And, I spend more time than I would care to admit thinking about what life will hold for me if I have to go on without one of my kids. It's morbid. It's sad. And, sometimes it leaves me frozen. (And, I realize I am violating my own commercial break a little here, but I say all of this for a reason.) As that lightening bolt crashed down hilariously and dangerously close to my car filled with oxygen tanks, it became glaringly apparent that none of us have any kind of a handle on life and death. It could have been over quick as a wink, and I would have been staring at God, hands on hips, saying, "You're KIDDING me, right?!"

So, I was jerked back into the crazy reality of my life, and the almost comforting understanding that none of us is promised anything. Life is a gift. And, it is fun. And, I am ever so grateful for the moments that really make me want to pee my pants.

Comfort

2010-03-04T18:40:00.000-08:00

I'm sitting in the hospital listening to the gurgling sound of the oxygen coming from the wall. Dan is resting, and I am relatively content and at peace. Initially, I was planning to come home today, but I decided to stay an extra day when the doctor came in with news of the "events" of the day. Danielle had a special Pulmonary Function Test (PFT) in the "Box", and they also wanted to do an Arterial Blood-Gas Test (ABG). So, I'm glad I was here for all of that.

Dan gets so freaked by needles because her veins have been terrible for years and she has had a lot of trauma with getting stuck over and over. I try to help her remain calm, but sometimes Fear just grips her and there isn't much I can say to help... But, I'm here. And, I don't leave her because, while I completely understand feeling afraid since I have such an intimate relationship with the emotion lately, I don't like Fear being allowed to snuggle in next to my kid... It can come and terrorize me. Whatever... But, I want Fear to leave my girl alone. "You can't have her! She already has CF. She doesn't need you, Fear, cozying up and making a home in her..."

So, I stay... And, I try to bring Peace, our sometimes fleeting friend. Sometimes, I try to invite Humor, who will appear readily and unexpectedly. But, most of all, I just try to bring Comfort. Sometimes I'm lucky because Comfort stays with me often, and I am able to send her out in times of strife. She is able to hold hands, stroke hair, bring wet wash cloths, and look into eyes. She has empathy and compassion for Fear. She also is able to co-exist with all of the Emotional Visiting Family Members. Comfort sustains us through all the trials, and if I am able to bring her along, I will always stay.

The Rod and the Staff

2010-02-28T01:12:00.000-08:00

I'm up. It's officially 3:12 a.m. and I'm up. I got tired of just lying there pretending to sleep, so I decided to get up and write. Tonight my mind wasn't plagued by the racing thoughts that sometimes haunt me. It was annoyed by one line in a really beautiful song I was listening to earlier. I have a dear friend, a Secret Pal, in fact, who gives me different CDs with uplifting songs. One of these CDs has an incredible rendition of the 23rd Psalms. I'll have to find out the artist and post the name here, but I am unwilling, even though I'm up, to trod out to the carport in my underwear to retrieve the case right now.

But, the 23rd Psalms has always been one of my favorite verses. Probably, it is a lot of people's favorite since it is kind of famous and all that... I'm mean, it is a goodie for funeral choices. Recently, it was read at my dad's funeral. But, tonight, as I was lying there trying to sleep, that line, "Thy rod and thy staff... They comfort me..." And, ahh... I felt the peace that usually comes... A little spiritual connection... And, then I thought, "Wait a minute, why is God comforting me with a rod and a staff?" Why not a nice blanket? Why not wool or linen or feathers? Didn't they have soft, squishy things during Biblical times? Sure they did. Or how about a hug? My friend, Cora, gives the best, mushiest, 'I love you even though I'm not saying it' kind of hugs... But, God is choosing a rod and a staff to comfort me. Those are hard and stiff and very straight.

So, I got up and Googled "rod and staff". Well, I discovered that Rod and Staff is a publishing company for homeschooling materials, which was kind of interesting... But, then I stumbled upon all kinds of websites discussing the merits of beating children and defending it with Bible verses... Hmm... Still not what I was looking for exactly. Then, good ole Wikipedia came through. A Shepard's rod and staff is used to guide sheep to insure they don't wander into dangerous territory. That's kind of nice. God is keeping me in a safe place where he can look out for me. I like that idea.

Then I also discovered that the rod and the staff were considered to be a symbol of authority and sometimes to have great and miraculous powers. The Red Sea was parted by Moses' rod... He also brought water from a stone using his rod. These rod and staff miracles were during the time of the Plagues of Egypt. And, I knew about those miracles. I mean, I kind of have an embarrassingly little general knowledge of Biblical history that I remember from children's Sunday School, and thank you History Channel for the specials that sometimes enlighten me... Anyway, I also learned something new... Moses was creating his miracles during the Plague, but did you know that the whole Plague of Egypt started with a rod and staff miracle?

Evidently, Moses had a sidekick... Aaron. He and Aaron visited the Pharaoh to try and warn him. Well, the Pharaoh wanted some proof that Aaron and Moses were really trying to tell him something "Divine", so Aaron threw his stick down [clank and clatter] and it turned into a serpent! Holy Cow! (Oops... Is that blasphemy?) Well, the Pharaoh didn't want to be outdone so he ordered his Sorcerers to throw down their own rods, and yep... You guessed it. They turned into serpents too. But, Aaron's rod/serpent gobbled up all those other ones. This was supposed to be a warning sign, but the Pharaoh still didn't listen. The Bible says he was stubborn, but maybe he just didn't understand the sign... Maybe he is like me... Looking for signs, misunderstanding the signs, seeing signs, missing signs... It gets very confusing.

Anyway, later on, during the another plague, (which were very common in Biblical times, I'm guessing) Aaron's rod produces flowers, plants and ripe almonds. What happened to this rod? Some believe it was preserved in a Tabernacle for the Aaronic Priesthood, but the Jews believe it was used to slay the giant Goliath and was passed down through King of David's lineage.

Of course, this is all just Christy's version, and you can Google it yourself to read the real version because I'm sure my summary is missing some key elements. I have to break the Bible down into an almost kindergarten-like version because I find it confusing and sometimes even a little scary. In fact, there are many parts of it that I don't think children should be studying until they are much, much older... But, that's a topic for a different day.

For today, I would love to tell you that I am full of faith, but the truth is, I am plagued with fear. There's that word again... "Plague"... Maybe I do need a rod and a staff. I am overwhelmed with all that life has offered lately. I walk around feeling like someone turned me inside out, and I just want some kind soul to gently turn me right side out again like I sometimes have to do with the kid's shirts at school.

I worry for Dan. The other day, my doctor-friend (Yes, you'll be happy to hear I am under a physician's care) told me that I have to find a way to have some fun because this is my "new normal". And, still, I am struggling. I keep hoping that Dan will come home and somehow, through the miracle of consistent exercise and faithful treatments, her lung functions will improve. I watch her trying to gag down enough Pulmocare to help her gain weight. She struggles with the decision of whether or not to get a G-tube. I watch her... I help her lug oxygen tanks... And, I don't want this to be my new normal. I'm sad. And, I'm angry. I'm mad at Cystic Fibrosis, because dammit, we always tried to make a friendly place for you here in our lives and this is what you have done with our hospitality.

And, to make matters worse, Sar told me that she feels like I'm ignoring her. She feels like I am so preoccupied with Dan that she doesn't even exist for me. So, I need to do a better job with that because Sarah is my joy. She is the one who makes me laugh, and challenges me to think outside the box and always be one step ahead.

My girls, all three of them, have been such a tremendous blessing to me. I try to focus on that. I chose this life. I could have chosen a different path seventeen years ago, but the world wouldn't be nearly as colorful and alive without Danielle and Sarah. Micah may not even be here if I had taken a different road. And, I do believe that however floundering and child-like, I have always tried my best to seek God's will. That being said, maybe God is having to man that road with his rod and staff to keep me on the path, so he can look over me and be with me.

The Jews are a lot more specific about that rod. They believe it to be made of sapphire. It weighs about 10 lbs. and bears a Hebrew inscription that translates: "To the extent of God let these come to pass." I don't really know what that means, but I have always loved sapphire. In fact, when Dave designed my engagement ring, he designed it with a diamond in the middle and a sapphire on either side to represent both of the girls. He was marrying all of us. And, the idea of "let these come to pass" does give me comfort. Passing seems like enough.

The Space Between Us

2010-02-16T09:57:00.000-08:00

Earlier, I was having a text messaging conversation with a dear friend. She was sharing struggles with her preteen son, who has an illness that sometimes requires hospitalization. While our children have incredibly different diagnosis, both require various types of at-home care, and we struggle to do the best, and be the best for our children. However, there are moments when it all feels so enormously overwhelming.

I have read on multiple forums that CF parents are often overprotective and overinvolved. It's a challenge. You could add overtalkative, overopinionated, overanxious, overprayerful... I could probably qualify as any variety of adjectives with the prefix "over" in front. But, really... There isn't much choice. They send you home with this little bundle of perfection, and inform you that your precious little baby requires this specialized care in order to just keep living, and that even if you do everything EXACTLY right, your little fragile gift from God is likely to become sick anyway. It is the ultimate responsibility. And, there is no way to do it perfectly... In the striving to be the perfect CF parent, you can drive yourself crazy. Sometimes, despite medication compliance... Despite following all the rules, illness comes without rhyme or reason. When this happens, I find myself flipping through my mental Rolodex of every decision I have made on behalf of my children trying to determine if I had decided differently at one particular moment in time, would it have changed the outcome for this moment today?

But, guess what? After talking to my friend today, I realized CF parents don't corner the market on this life experience. Parenting is hard and there are no guarantees. I mean, I watched Intervention last night and wanted to slap the crap out of the girl on there, and grab her parents by the shoulders so I could shake them until their heads goggled around in circles.

Part of the transplant procedure requires a psychological evaluation and an assessment of Danielle's support network. Well, we have the support network down pat. I mean, if anything, we support. We hover. We downright suffocate. But, gulp... Psychological soundness? How can we fake that for any length of time? What's involved? Is there some type of sliding scale? Do they use norm referenced scales? Can I research and learn the correct answers to these questions? Are there penalties for being overly studious and neurotic?

I do know that while I in no way have a handle on mental and emotional stability, I am working on establishing some healthier boundaries with Dan and Sarah. Lots of times, when one of them is hospitalized, I say "we" are in the hospital. Well, the truth of it is "I" can walk out anytime I want without any repercussions, except perhaps the nagging parental guilt that plagues me. There is this mean little girl that lives in my head who says things like, "Great! You give her a defective gene and then have a hard time watching them stick her? You stay in there for this... You suffer through the boredom and the torture of a hospital stay right alongside. This is your cross to bear too." But, when I'm able to put the mean girl that lives in my head in time out for a while, a nice little girl comes calling to say, "God chose you to be their Mom. You are the supporter. You have to be in optimal condition to do the emotional support job. Be kind to you. Take care of you. As much as I know you would take CF in a heartbeat and have it for them, you can't. That's not your job in this life."

It's hard. But, as my mama always said, "Who promised you easy?" Nobody. Not today anyway...

This is the Only Face I Have

2010-02-06T04:47:00.000-08:00

"How are you?" This is the question everyone asks with compassion in their voices, sometimes tears in their eyes, and all the while deeply probing into my eyes with their own earnest kind-hearted ocular glands. And, it is sweet. And, I am so grateful. And, I am so humbled. And, it is killing me.

There's nothing to do about the question. It's there. It has to be there. And people aren't asking it just to make small talk. They really care. I don't really want people to stop asking... Well, kind of, I do. Because I don't know what answer to give.

I could give the psychological, academic answer: "Well, A-Hem, I believe I am coping extremely well given the strange series of trauma that has occurred all right in a row in my life. My limbs seem to still be attached, and I am walking around, appearing normal, but might possibly undergo a psychotic break any day now. Be on the look-out!"

Or, I could give the spiritual, airy-fairy answer: "I am great because I know that all is in Divine Order. This is a spiritual process called chemicalization in which lots of things go wrong at once in order for God to make smooth and perfect my way in the quickest earthly time possible. Did you know this world isn't really real, anyway? It is all just a grand design for the growth of my spirit! Isn't that fantastic?" Which, by the way, I really do agree with the spiritual, airy-fairy answer, but it would be hilarious to unleash that on people when they wander up and ask how I am.

However, I have chosen the more casual, walking-down-the-hall-in-passing answer, "I'm hanging in there!" And, I think it speaks to everything that is happening. It's a truthful answer. It tells I am putting one foot in front of the other, but reveals there is obviously "stuff" I am having to deal with. It's just that this answer isn't great when someone is holding both my hands and peering deeply into my oh-so-green irises in an attempt to read them like a crystal ball.

My friend, Amy, called me the other day just to check on me to make sure I'm O.K. There are certain people who get more than a "hanging in there"... Although, some days, that's all they get too, so don't feel left out. She said, "Hey. I was just called because I saw you and you looked... Well, I don't know. I just wanted to make sure you are O.K." And, I would like to say that this was just an example of my good friend noticing something that no one else can sense, but evidently, it's not. Cora approaches me all the time and says, "You O.K.? Let's have a hug." I walk down the hallway and people say, "Smile." (And, this has never been a smart thing to say to me... Even if I'm not in a bad mood, it puts me in a bad mood. Such audacity to think you need to have control over when and where I smile. Get a grip.) I guess the point is, I don't know what my face is doing, but this is the only one I've got. And, I imagine there are moments throughout the day when I can't make it do what I want. I want it to be a mask.... A mask that hides the stress, worry and pain of everything that is happening in life right now, but it can't. And, probably, if it did, people would really freak out anyway.

So, for future reference, I have a Conscious Discipline suggestion of how a casual conversation needs to go:

Person who cares and wants to let me know they are thinking of me and wishing me well: "How are you?"

Me: "Hanging in there."

Person: "Great! I'm thinking of you and wishing you well. You can handle this! You are doing it!"

Me: [insert smile here]

Chink in My Armor

2010-01-16T16:35:00.000-08:00

It was completely unexpected. The uncontrollable crying started, and I just couldn't stop it. I had taken a half-day yesterday, so I could drive up to the Children's Hospital in Birmingham to spend the weekend with Dan. We are planning to go home on Monday. She is really doing better; although, she will be coming home on oxygen. The tentative plan is to keep her home for three weeks and check back in for another admission in three weeks. If she gets sick in the interim, we can always bring her back early.

So, I left work and went home to complete my packing and load the car. Dave had arranged for me to swing by the Vo Tech to pick up gumbo for dinner before I left town. As I turned out of my little dead-end street onto Hwy 90, the oxygen tanks clinked together in the floorboard of the backseat... And, I don't know... Something about the sound sent me over the edge. The tears came. The sobbing started, and I was just unable to continue on.

I turned into my school, entered the office and headed for the Principal's office. I guess that might seem a little odd to some, but it was my "safe place" for that moment. Ms. Bridget found Dr. C for me, who sat by saying comforting words, even though I'm sure he was completely at a loss as to what to do with me. Ms. Shelley got me a diet Dr. Pepper, and Amy was ushered into the office to hold my hand while I cried. Becky Bailey is totally onto something with the whole school family idea. My school family does comfort me. They all care. They go out of their way to take care of me. And, I am so blessed and lucky to have each one of them.

My whole school district has been so supportive. They are going out of their way to make sure Dan can return to school, even with oxygen. And, I just stand by in awe of the love and support being offered so freely. Being loved like this and watching people love my child is just a true testimony of God's love in action.

Really, I have been O.K. Most of the time, I am walking around with a sense that God is doing for me what I cannot do for myself... But, yesterday, the clink, clink, clink noise of the oxygen tanks broke through my facade of O.K. and found that place of hurt and fear and all the stuff I try not to pay attention to. In education, behaviorists believe ignoring some behaviors will extinguish them entirely. And, who knows, maybe that is true for behaviors... But, sometimes feelings can't be ignored... They come bubbling up to the surface in the strangest ways at the most inopportune moments. And, all I could do was feel the feelings, cry the tears, and let people love me.

I Wanna Be Like Ernie, But I Must Admit, I'm Burt

2009-12-28T09:04:00.000-08:00

These days, I watch a lot of Sesame Street. And, if you haven't watched lately, I recommend you tune in. It has changed the way I present material when I teach, but beyond that, it is just really entertaining. I also find it very enlightening. But, of course, that is my thing. I'm seeking enlightenment, and I can even find it while tuning into Micah's favorite program.

The thing that struck me this morning is the segment entitled, "Burt and Ernie's Great Adventures". It starts with Ernie singing while Burt's bed sprouts legs and starts to stomp and dance around the bedroom. Ernie is singing about lying in bed and is excited for the next great adventure that is coming. Burt, however, sits up in bed, alarmed, crying, "Oh, no. Not again!"

I'm trying to greet life with the child-like excitement of Ernie... Wow! A new adventure! How great. Get on board! But sometimes, I find myself being stuffy old Burt... Oh, no. Again? I don't want an adventure. I just want to sleep.

Danielle is being admitted into UAB tomorrow. The admission was moved up from the 11th because she is struggling to breathe again, but this will expedite matters with a transplant team appointment. So, for today, I'm being Ernie. Get on board! It's exciting! We are up for a new adventure!

Strength

2009-12-19T08:13:00.000-08:00

Yesterday, my friend, Amy, gave me a beautiful necklace inscribed with the words, "All the strength you need lies within you..." The charm on the necklace is shaped like a circle within a circle. And, of course, this is the Daily Word today:

Saturday, December 19, 2009- Journey- I am on a divine journey of peace and joy. Mary and Joseph's journey to Bethlehem was likely difficult, both physically and mentally, requiring a great deal of strength and stamina. Throughout their journey, they had faith in God. At the end of their travels they experienced pure joy, for a new life was born! In my journey through life, I may encounter moments that require greater strength and stamina. I may be learning a new skill or coping with a challenging circumstance. I receive strength of spirit and stamina in mind and heart as I trust in God as my guide. With God my way is clear and my journey secure. In God's presence, I experience a new life, filled with joy and everlasting peace.

Joseph also went from the town of Nazareth in Galilee to Judea, to the city of David called Bethlehem. --Luke 2:4

Life's challenges have brought me into complete reliance on God... And, the funny thing about that is I'm pretty sure I'm supposed to be in complete reliance all the time... Not just when things get rough. Maybe that's my life lesson right now. And, I have a sense that God is making smooth and perfect my way. He uses my friends for strength and support through it all.

I Can't Know...

2009-11-22T03:51:00.000-08:00

I'm learning so much about what I don't know. And, I'm discovering that what I don't know could fill rooms and canyons and caverns and oceans. I'm a teacher. I'm also a perpetual student. So, I'm supposed to know stuff. My mother has always stressed the importance of education, striving for knowledge, and being well-read. I bought the whole idea that "Knowledge is Power". But, I'm discovering that what I don't know wields a mighty sword.

A couple of weeks ago, Dan and I made a trip to Birmingham for a follow-up visit in their CF Clinic. She had been hospitalized at UAB in an effort to improve her dwindling lung functions, and we were seeking a second opinion about the next step in courses of treatment. Unfortunately, UAB was unable to offer anything really different or innovative in the plan of care for Danielle. And, it wasn't because they didn't try. There isn't anything new medically to do.

Previously, the doctors said they didn't note any permanent damage on her chest x-rays. We all held onto that report like a life-preserver. In Cystic Fibrosis, scar tissue replaces healthy tissue in the lungs as the disease progresses. This scar tissue ultimately makes it more difficult to breathe and essentially suffocates the person from the inside out. Thus, it came as a sickening surprise when Dr. Hoover told us that based on her current lung function and predicted disease progression, Danielle only has 2 to 3 years left to live unless we do something radical, drastic, risky, scary and miraculous... A double lung transplant.

I have walked around in a fog for two weeks. For seventeen years, my sole mission in life has been to keep my girls healthy enough to live whatever life they have wanted to live. I would passionately write letters to be included in their school files about their care that always included the line: "We live with Cystic Fibrosis, not for it." We enrolled in drug trials, and walked a delicate balance between living life and doing the medical necessities to care for the girls' bodies. With CF, the statistics have always been in the back of my mind. The mean life expectancy is currently 37-years-old, but it was 17-years-old when Danielle was born. Lots of people with CF are living into their 30's and 40's. Then there are the "outliers"... One woman lived to be 79 years old... Several people with CF have survived into their 60's. My girls were/are going to be the outliers. But, this throws a wrench in my "outlier plan".

Dr. Hoover explained other statistics... (And, I couldn't help but think that math has always been my nemesis.) Currently, there is a 50% survival rate for 5 or more years of life post double lung transplant. And, there are outliers within lung transplant recipient statistics too. You can read about the courageous story of Susan Burroughs, one such "outlier" here: http://www.reachingoutfoundation.org/lungtransplantation.htm.

So, I'm sitting and I feel the weight of the numbers bearing down on me... I believe that I have always relied upon God. I have always felt His/Her loving presence watching over my family, and I have developed a close, personal relationship with my God. You see, this God has come to me in the hospital bathrooms when I have locked myself in, sobbing silently into a towel after difficult medical procedures in which I held my girls down so the nurses could stick them one more time. I've never had a white light and George Burns didn't show up smoking a cigar, but I knew in my heart that God was healing me, healing them, healing us all because I felt the presence in moments of extreme vulnerability. But, I haven't had to be a crumbling mess to feel God. I have experienced that presence in prayer and meditation too. I have experienced that presence in class when I really want to pinch a student's head off. I have experienced that presence when I have walked out and looked up at the sky and noticed an incredible sunset. So, since I was about 14-years-old, I have walked with God... And, my concept of God is probably not the same as yours, but I have known an all-loving, all-forgiving presence in my life, and I have done my best to introduce that God to my children.

But, my error has always been in trying to figure out God. I have tried to mash together my knowledge about CF, treatments, therapies and the like with what God's will is supposed to be. And, I think I have always been aware that I do that. I have probably even written about my spiritual struggles here. It's like I was trying to create my own mathematical formula. If God is all-loving, then my girls will live long and healthy lives. And, that still may be true... But, it also may not, and it doesn't mean that God isn't all-loving if I can't have my way.

And, I think I have done an O.K. job with Dan because she has handled this news WAY better than I have. We both cried as Dr. Hoover delivered the news, but after he walked out of the room, Dan wiped her eyes, looked at me and said, "Wow... That was scary!" We erupted into peels of laughter. A few days later, as I was moaning and groaning, Dan said, "Mama, I'm not going to die. I'm going to get new lungs and be able to exercise and dance and breathe... But, even if I die, this isn't the end." And, I know that. I know that what my wise-beyond-her-years, 17-year-old child says is true. But, I want her here with me. I don't want to have to figure out how to live in a world that doesn't have Danielle in it.

Hence the power of what I don't know... Right now, I have a student with severe language delays. Instead of "I don't know", he says, "I can't know"... And, I have begun to think that maybe, just maybe, he isn't the one with the delay. "I can't know" pretty much sums up my state of affairs at this point. I'm going to have to rely on God to carry me through the next step, having no idea what the future holds. But, I can choose to be a crumbling mess, or embrace the gift of not knowing. I can't learn this until I've gone through it... And the only way around it is through it.

This Conscious Moment Brought to You by Micah...

2009-10-18T07:06:00.000-07:00

This morning I had a Conscious Discipline "Ah-Ha" moment! Conscious Discipline is a program developed by Dr. Becky Bailey http://www.lovingguidance.com/to help with classroom management and discipline... At least, I'm assuming that is why she developed the program. The introduction to her book, Conscious Discipline: Seven Basic Skills for Brain Smart Classroom Management, describes an experience she had while attempting to get a boy with special needs out of the pool during a field trip. Her frustration with that experience, and her belief that there must be a better way to manage a classroom and facilitate student cooperation while honoring the spirit of each individual child is the basis for the development of the program.

And, I wish it were that simple. I wish it was just a program with cute little songs and dancing and catch phrases to use in particularly hairy moments in the classroom. But, of course, nothing is ever that simple for me. My school hosted a training for many teachers in our district last year. In fact, on my first day back from maternity leave, I attended the first session, and began a year long, probably lifetime journey. My CD experiments began in the classroom, but immediately moved into my home, as I became aware of how much better I could have handled situations with Dan and Sarah if only I had Conscious Discipline when they were small.... And, trust me, I'm forging the way using CD techniques with my teenagers, but really, because Micah came along at about the same time Conscious Discipline came along, she is my experimental subject... Well, I say that she is the subject, but most of the time, the subject turns out to be me.

That is the beauty of Conscious Discipline... And, the thing that sucks the most... It's not so much about "managing kids"... It's about managing myself. CD simply brings startling awareness to my complete inability to manage myself, my emotions and my attitudes... Hence the term "Conscious", I suppose.

Back to my Ah-Ha moment... So, this morning, I was unloading the dishwasher and Micah was toddling around the kitchen "helping" me. She loves to help with the dishes and the laundry. The cabinet that houses plastic storage containers remains without child locks, so she has free access. When I unload the dishwasher, she helps by putting the plastic bowls and lids into the cabinet. She loves to put them away almost as much as she loves to pull them all out. And, keeping her busy with plasticware guarantees she is within my visual field and not off playing with an electrical outlet somewhere. Micah is meticulous in her plastic bowl stacking techniques. She stacks them by size order, and then restacks them by color. She puts the square bowls with square ones and round bowls with round ones. It is really quite amazing how systematic she can be in her organization of the bowls. She knows how to put the bowls in the cabinet. She knows how to open the cabinet door and close it. She knows everything about the process.

This morning, I gave her the round plastic bowl and asked her to put it away. She toddled over to retrieve it and went to put it away. And, of course, I beamed with pride at the brilliance of my littlest daughter. Then, I asked her to put the accompanying green lid away, as well. She came over and retrieved the lid, and toddled over the the cabinet, but at that precise moment, she saw the kitty. And, she squealed, "Kitty!" and promptly dropped the lid to ooh and ahh over the kitty she has seen every day of her life. (Although, given that she is only 15 months old, that really isn't enough days for the newness to wear off, I suppose...) I continued unloading all the breakable dishes and sharp utensils while her attention was diverted. And, when the wonder of the kitty sighting had faded, I prompted her again to put the green lid away. She picked it up and proceeded to waddle right by the cabinet to her Fisher Price Learning House where she flipped the lights on and off. I called into the living room, "Micah... Come put the lid away. Put the green lid with the red lid." She again grabbed the lid and staggered back toward the cabinet, only to drop the lid two feet away from the cabinet, where she abandoned it completely to pick up a leaf that had blown in from the back door.

By this time, I had finished unloading the dishwasher, so I simply picked up the green lid, and placed it in the cabinet. And, the heavens opened up, with a golden light streaming down and angels began to sing... (Not really, but this is where I had the Ah-Ha moment.) I realized that I didn't think, "What in the world is wrong with you, Micah Glyn Maxwell? You know how to put the *#$^% plastic lid away, but you aren't doing it! You are purposely trying to defy me! I am SICK to death of this behavior. What in the world is wrong with you? Your parents probably allow this type of behavior at home! You can just do whatever you want, and now you won't even put away the green lid. I am going to spend my nights thinking of ways to make your little life miserable until you can figure out a way to put the green lid in the cabinet like I told you to..."

Instead, I realized that she was doing exactly what she is supposed to do. She was doing her baby job. But, how often do I think something similar at school when a child doesn't do what I ask him to do at precisely the moment I ask it? And, then... worse than that little revelation comes an even more uncomfortable insight... The problem is not the child's behavior. The problem is the thought in my brain triggered by the behavior. With my own baby at home, I had compassion and an understanding that developmentally, she was doing exactly what she was supposed to do. With my kids at school, there are times when I believe the defiance is on purpose, when really... honestly... even if it's "on purpose" my thoughts about the "defiant behavior" drive the outcome of the entire interaction.

"Put the crayons away and come to the table", can become the catalyst for immediate conflict. Now, the difference at home is that I'm not trying to wrangle 13 little versions of Micah with none of them putting the crayons away and all of them scattering and breaking crayons all over the house. But, my mental language is key. The truth is that my students are doing things that are developmentally appropriate for them, most of the time. Even open defiance is helping them to become independent and able to serve themselves in the future. Sometimes their behaviors might be helping them to survive in homes riddled with abuse and drug addiction. It isn't always clear... But, the thing that became crystal clear is that my ability to control what goes on between my ears is the most important factor in promoting a positive interaction in my relationship with anyone. Dr. Bailey covers all of this in the Power of Perception, the Power of Acceptance, and the Power of Empathy, but moving the lesson the 12 inches between my head and heart is the longest journey of all.

Peace and Everlasting Gobstoppers

2009-08-25T13:42:00.000-07:00

Here we sit. And, sit. And, sit. Just waiting. That seems to be a tremendous part of this trial. Can we endure the waiting? Sarah inhaled her last dose of the magical elixyr this morning, only to begin the marathon sessions of blood drawing, blood pressure getting and pulmonary function testing. But, amidst all the flurry of medical activity, there sits the waiting. And, we sit with it looming over us and becoming part of us.

I'm not complaining. Spending the day with goofy old Sarah is always a lot of fun. We have listened to lots of music and goofed off on the laptops. However, currently, I am blogging on Sarah's as my touchpad mouse died a little earlier. I have also had the opportunity to read and edit a book for my friend, Tom.

Tom has been writing all about his life as it intertwines with meditative practice. Today, I read about how he fought a battle with prostate cancer, recovered from a severed Achille's tendon, and swam out of veritable financial collapse only to meet a car accident resulting in eventual brain surgery. And, he did all of this with grace and faith and courage... And, I have to say that part of me just wants to puke. Don't get me wrong. I am SO in awe. I mean, I want to be Tom when I grow up. I want to nod and smile a spiritual smile, and hold hands with the doctors singing Kum Bah Yah with absolute faith that all is in Divine Order. But, I don't. I snatch at serenity and peace. I grasp at meditative practice. For me, it's like trying to hold onto very fine, dry sand. I can hold it in my hand and it just slips gently through my fingers until I reach desperately down to grab another handful.

Yesterday afternoon, I sat in this same office with my other beautiful, blond daughter, Dan. She has been having real trouble breathing again. So, we skipped over to Mobile to visit our very favorite doctor... He is the indeed the Willy Wonka of medicine. But, even Mr. Wonka can't get the formula right for the Everlasting Gobstopper to make Dan's lung functions improve. Since March, her lung functions have decreased. We have had moments of slight improvement, but in general , the results haven't been lasting. Randy, the girls' dad, has been asking me about taking Dan to University of Alabama at Birmingham (UAB) to let those doctors have a whack at her. So, yesterday, I asked Dr. Sindel (aka Mr. Wonka) what he thought about that idea. He agreed that it might be good to hear another opinion, so he is making the referral, and we will make the journey north. (Not too far north... Afterall, it's still Alabama.) I want Dan to get better. Watching her struggle to breathe is so hard. And, in the midst of this, I sit. I try to "be mindful" like Tom is writing about. "Be in the moment. Be present. Happiness is in the present." And, I get it. I think I get it. And then Dan breathes and it sounds a little like an accordion as she exhales, and I don't get it anymore.

I believe that God is all good and wants only the best for each of his children. I also firmly know that I don't know what is "good" or "bad". So, I understand that accepting what is has be the place of peace for me. But, I can't help the gnawing in my stomach that crops up when I watch Dan or Sarah struggle with the manifestations of CF. I do understand the whole "dying for our sins" concept at this level, though... (Although, I still have great difficulty with the Christian belief that God required this of his son, but that's a topic for a different blog, and I will probably never write it since the Obama/Palin blog struck up such controversy amongst my family.) I just know that if I could die and relieve Dan and Sarah of this disease, I would. If I could take it on myself, I would, gladly. But, that's not my role here. I'm supposed to find a more lasting peace, a stronger sense of courage, and a deeper faith as I sit with the fear whenever my girls face a CF-related trial.

Honestly, while this entry may not read like it, I'm really pretty accepting today. The drug study has been very positive. Tony Cowan, our researcher, is a blessing in how well he handles Sarah's little personality quirks... In fact, everyone at Dr. Sindel's office rallies around to support the girls in whatever way they can. I have listened to Rachel, the nurse, patiently field calls from frantic patients calling all day about the Swine Flu. My family and friends lift us up in prayer support and I do have moments of such peace that flies in the face of all the circumstances that present themselves in our lives. For today, we're all breathing... And, we are grateful.

Magical Inhalation

2009-08-19T20:16:00.000-07:00

Sarah is enrolled in a drug study for inhaled Levaquin. In fact, she was the last patient in the Phase 2 trial before it goes to FDA approval to move on to Phase 3. (We considered blowing it off since school started, but given the importance of moving the research along, agreed to go through with it.)

All the particulars are topics for a different day... Maybe the next day Sarah is hooked up to I.V. waiting for periodic blood-letting as outlined by the procedures in this trial. I just haven't had much time for my quirky, bloggy updates... But, preliminary results show a marked improvement in lung function after only a week on inhaled Levaquin. Large airway functions increased by 10%, while small airway functions increased by 18%. And, these improvements were after Sarah developed a cold.

Dan did not qualify for the study because she was sick this summer and had to be on I.V. antibiotics. However, she is snuggling up REALLY close to her sister as she does these treatments in the hopes that some of this magical elixir wafts her way.

Danielle Update

2009-06-16T12:18:00.000-07:00

As of today, Dan is still in the hospital. She has been rumored for discharge for the past few days, but Dr. Sindel has advised keeping her a little longer because she is coughing up red mucus, which indicates blood. With CF, this happens sometimes with a serious lung infection.

On the bright side, the sputum cultures have indicated that Danielle is currently receiving the correct medication to treat what ails her. Nothing new and scary grew in the sputum culture. In fact, she is no longer growing fungus, so one of her medications was discontinued.

Thanks for all your love and concern. You have no idea what your prayers mean for all of us.

Love and Light to Each of You!

Child-Like Faith

2009-06-10T05:12:00.000-07:00

I receive the Daily Word, a daily meditation publication from Unity, each day via e-mail. When I opened my Inbox this morning, this is what I received:

Today's Daily Word - Wednesday, June 10, 2009
By Example
I lead, and I am led by example.
We may not always be aware that little ones are paying attention to us, learning how to love, care, and trust. Our acts of kindness toward children are gifts from our hearts. Praying with children demonstrates our faith and an expectation of good.
And often, it is the children within our midst who lead us by example. Children know without question that God answers every prayer.
Children see majesty in even the most minute elements of the world: the varieties and aromas of flowers, the colors in a rainbow, the splendor of a sunrise.
As adults we lead by example. Let us also take the time to let our children be our teachers and guides.
"Remember your leaders, those who spoke the word of God to you; consider the outcome of their way of life, and imitate their faith."--Hebrews 13:7

And, as I read this, know that I am grateful for this Truth. It has been so enlightening to watch Micah looking at flowers or touching a kitty. She looks at each new thing with such amazement and wonder that it makes me look at things with a gratitude for all the simple things that exist in this world. She is my teacher, as much as I try to be an example for her.

Then this thought brings a measure of anxiety. Have my children learned their faith from me? And I am reminded of this story... This story from Matthew that makes me crazy... This story that leads me to beat myself up mentally:

Matthew 15:21-28 (New International Version)
21Leaving that place, Jesus withdrew to the region of Tyre and Sidon. 22A Canaanite woman from that vicinity came to him, crying out, "Lord, Son of David, have mercy on me! My daughter is suffering terribly from demon-possession."
23Jesus did not answer a word. So his disciples came to him and urged him, "Send her away, for she keeps crying out after us."
24He answered, "I was sent only to the lost sheep of Israel."
25The woman came and knelt before him. "Lord, help me!" she said.
26He replied, "It is not right to take the children's bread and toss it to their dogs."
27"Yes, Lord," she said, "but even the dogs eat the crumbs that fall from their masters' table."
28Then Jesus answered, "Woman, you have great faith! Your request is granted." And her daughter was healed from that very hour. - http://www.biblegateway.com/passage/?search=Matthew%2015:21-28

This story just kills me. Since Dan was born with meconium ileus, a bowel blockage, and her intestines had ruptured in utero, I have been on a quest for faith. Until then, I believed that intellect would be my saving grace. And, don't get me wrong. I have great faith is academic and educational pursuits, or I wouldn't be a teacher. If I didn't believe that education could change the world, I wouldn't bother, because truly, in many instances, ignorance is bliss... However, when I was told at the age of 23 that I was going to have a child with a chronic, terminal illness (That's how CF was presented at the time...), my heart needed something more. I knew I couldn't face CF with just education, because the more I learned, the more frightened I became. I needed faith. I needed to believe that miraculous healing could take place if only I believed strongly enough.

And, then, when I began learning about spiritual healing, I was introduced to the above story from Matthew. And, frankly, it ticks me off... As I sit in the hospital with Dan, who is currently NPO (not allowed to eat or drink anything) until her surgery at noon to place a port-a-cath in her chest, I just feel pissed. So, if I am "getting" this story, a Canaanite woman approached Jesus and asked him to heal her daughter because she was possessed by demons. I don't really know, historically, what a Canaanite woman is, but I am assuming she didn't follow Jewish traditions because of the reference about taking children's bread and tossing it to the dogs. (If anyone is reading this and understands the historical interpretation of this scripture, please let me know... Hint... Hint... Reverend Christy) So, then this woman kind of smarts off to Jesus and says that even dogs will eat crumbs that fall from the Master's table. I can't actually tell if she is smarting off or trying to stroke Jesus' ego, but this is precisely my mode of operation when I am trying to get my way... Just ask my boss... And, all of a sudden, Jesus turns to her and tells her that her faith is so great and based upon this, her daughter was healed that very hour. Ta Dah!

And, this is exactly what I have been wishing, and hoping, and praying for since Dan and Sarah were little. But, this is the FURTHEST thing from how God works for us. I desperately want a Ta Dah! But, spiritual healing isn't like that for me. And, I guess because it isn't like that for me, I'm not able to convey something I haven't got to my girls... In the past, this has been the reason for my self-flogging. My mind tells me, "Christy, if you were just more spiritual... If you didn't fall into fear and doubt every time one of them gets sick. If you didn't feel overwhelmed and question why this was happening at this particularly ill-timed moment... If you just had greater faith, your girls would be healed."

Recently, I attended a Unity retreat. The focus of the retreat was Hands On Healing, by Dr. Glenn Mosley. It was a 2-day retreat in which I received training in hover touch healing modality, based upon Eastern philosophies surrounding Chi energy. Of course, my attendance at this particular retreat just demonstrates my continuing pursuit of the Ta Dah! type of healing. However, Dr. Mosley didn't talk about Ta Dah! healing. There were no snakes being handled. People didn't rise from their wheelchairs and walk. In fact, he talked about being open to all modalities of healing. And, in true Unity fashion, making use of the expertise of doctors and health professionals, but embracing a healthy lifestyle and changing diet in addition to using the Hover Touch healing methods. And, during the workshop on the second day, he said something that troubled me deeply. He said that my guilt and non forgiveness can get in the way of being able to convey healing energy to others. (Now, he wasn't speaking directly to me... He was speaking to the main group, but he may as well have pulled me aside and wagged his finger at me while giving me a good talking to.) I left the workshop and entered the prayer room in tears... Finally, something changed in my heart, and I began to understand that I have to quit beating myself up for being a genetic defective and passing this illness along to my girls... Not because it isn't true at some very technical, medical level, but because the guilt and non-forgiveness get in the way of healing for my girls. And, the other enlightenment that I had is that the guilt and non-forgiveness get in the way of my healing. God loves me even more than I love my children. So, given this, I'm sure He hates what I do to myself mentally and emotionally every time they get sick.

I went home with this small revelation, and attended church last weekend. We always say the Lord's Prayer after our meditation, but our version of the Lord's Prayer is a little different... We say, "Forgive us our offenses, as we forgive our offenders." And, all of sudden I understood that CF is an offender. I can only forgive CF as an offender as I forgive my offenses, or whatever I perceive my offenses to be... And, my offenses are great in my own mind. I work so hard to be CF mom extraordinaire, but I fall short. I get scared. I worry. I don't keep up with the insurance and medical billing like I think I should and then become overwhelmed with the mounting medical bills and the annoying insurance denials. I forget to order meds sometimes when the girls run out, and they go without for a couple of days. I don't lead the girls in rigorous aerobic exercise programs that are sure to make their lung functions better. I don't even insist that the girls do a daily Yoga practice, which would also enhance their breathing capacity. Now, I do a lot... But, my mind doesn't give me credit for all of that... It's narrow, mean-spirited focus is always on my short-comings... Always magnifying my offenses into mountainous structures making it so difficult to sit in the quiet knowing of God's love. But, at the retreat, alone in the prayer room, looking at a picture of Jesus and a little statue of Buddha sitting in front of a brownie with a small bite taken out of it, (Unity people have quirky senses of humor), I understood that I have to learn to forgive myself. And, later in church, I understood that I have to learn to forgive my mind and CF, for those are my primary offenders.

In the grand scheme of things, I'm really a pretty good mom. What is my major crime? I love my kids so much that I want a miraculous healing for my girls. I want them to be magically cured of CF, so they don't have to take medicine and do treatments and get surgeries and deal with more in their lives than most people deal with in a lifetime. I want this so much for them. But, God deals in miracles, not magic. And, really... It isn't miraculous at all. It is quiet moments of realization in which I can give myself a break... It is quiet moments of knowing that it is all really O.K., and that my children are being healed... But, the healing doesn't necessarily look like I think it needs to look. I don't get to play the Caananite woman in this life. But, who the heck really knows? The Bible didn't do a follow-up and tell about how maybe the very next week the woman's daughter was again plagued by demons and she had to have great faith again. I keep wanting the faith job to be done, so that I can coast merrily in the "land of spiritual make-believe".

However, it just is not to be. And, honestly, I don't want that anyway. I have been blessed to have been chosen to be the mom of Danielle, Sarah and Micah. I am blessed with wonderful friends who support me with prayer and help and dinner deliveries. I am blessed with a fantastic husband who gets up every morning and gets the girls going with treatments. I am even blessed with an ex-husband and his new wife who come to the hospital every time and make sure the girls are always covered by secondary insurance. I am blessed with grandparents galore who come from Pensacola to help, or just live next door and help every day of their lives. And, I am blessed to have a CF doctor who is committed to achieving wellness for my girls. The healing presence of God is in our lives. It's just a gentler, quieter on-going story.

Beauty is in Getting the I.V. on the First Stick

2009-06-08T20:54:00.000-07:00

Here we are again... Back in the hospital. Pulmonary Function Tests revealed results at 39% for large airway function for Dan. So, Dr. Sindel wrote the orders, and we skipped merrily over to USA Women and Children's.

Now, a couple of interesting things happened upon our arrival... First, as we were checking in at admitting, Sarah began having a serious coughing attack. This was precisely the type of curl your toes coughing fit Sarah calls an "allergy attack". She had only a few short minutes before been trying to describe the attack to Dr. Sindel. The admitting clerk waved Sarah over to get her hospital bracelet on, and I had to explain that Danielle was the one being admitted. The poor clerk looked at me like I was obviously on some type of hallucinogen, but put the hospital bracelet on Dan's arm, against her better judgement.

The next interesting thing that occurred was that we checked in at 5:30, and no nurse came to see us until 7:30. Well, this was fairly predictable. You see... Shift change is at 7:00, and I'm sure the day shift nurse, (who we never even laid eyes upon), said to herself, "I'm not doing an intake... Leave that for the night nurse."

When the night nurse wandered in, I almost laughed. The last time Dan was in the hospital, I couldn't stay. Grammy and Mimi took turns staying, along with her Dad and Dave. Well, Dan didn't fair so well. She ended up getting stuck a lot, and nurses were unable to find the vein or prevent it from blowing. It is a fairly traumatic process. But, this particular night nurse is one that is infamous in our house. Both Dan and Sarah despise her. We have much history with this particular nurse. She is older, and sports a very large mole directly on the tip of her nose. Although, it really isn't just the mole that creeps the girls out... She comes in the middle of the night, flips on the light and talks loudly. She doesn't make an effort to catch the I.V. before it beeps, and things generally don't get done in a timely manner. Usually care from this nurse means less rest and more disturbance and upset. Sometimes I have been tempted to say, "Take some time off... I'll take this shift for you. Just bring the drugs."

The funny thing is that we always get this nurse, which leads me to believe that she probably sees the girls names on the board and asks for them. And, I wonder... Does she like them? Doesn't she feel the disdain in the room? Does she mistake the curt answers and uncomfortable grinning for genuine affection?

But, tonight when she walked in, I just told Dan to trust the process... And, this loud, annoying, disruptive, mole-on-the-tip-of-the-nose nurse was able to get the I.V. on the first stick. Suddenly, none of the annoying past experiences mattered. All that mattered was that she got the I.V. and saved my kid a little bit of pain. And, she saved me a little bit of feeling that horrible hopelessness that plagues me each and every time one of my beautiful girls has to get stuck. And, I told her, "Thank you so much..."

Now, as I type this, it is 11:30 p.m. No I.V. meds have been hung. No one has even offered us a cup of ice... But, I know that all is well. And, I am so grateful that she was able to do exactly what we needed her to do. Get the vein on the first stick without blowing it... And, because of that, she looks like Miss America to me.

Jeffrey

2009-04-18T03:55:00.000-07:00

And, then, there's Jeffrey... Dan has been dating a tall, handsome, goofy boy named Jeffrey for well over a year now. He has become a regular installation in my household and a part of the family. We all love him. But, I didn't count on having to figure out how to comfort or explain this beast that is cystic fibrosis to a boyfriend.

When the girls were small, and even before Dan was born, I educated myself. I read all about CF. Someone gave me the book, Alex: The Life of a Child to read while I was pregnant with Dan... (Which, by the way, is a freaking horrible book to read if you are 23-years-old and pregnant with a baby you know is going to be born with CF.) I think the person was trying to show me all the realities of daily breathing treatments, medications, and chest percussion therapy (CPT), but all that particular book did was frighten me into my bones. It really is a touching, heartfelt story about a father, Frank DeFord, who lost his daughter to CF in 1980 when she was only 8-years-old. Maybe I will go back and read it someday. Not today... But, someday.

On February 23, Danielle was admitted to the hospital for an overnight stay to have a mid-line catheter placed. This is rather routine for us. What wasn't routine and just a matter of course was the lack of progress she made on I.V. antibiotics. But, much like the Energizer Bunny, Dan just kept going and going until she couldn't go anymore. When we went to a follow-up appointment, her lung functions had dropped to 38%, and she was hospitalized. So, Dr. Sindel changed I.V. meds and kept her in the hospital for a week. She made slight improvement, but nothing to jump up and down about. She came home on I.V. and that little mid-line was like "The Little Engine that Could" because it kept going until we pulled it last Saturday. Mid-lines are really only supposed to last a month or so, and we were just so absolutely over it. But, one week later, Danielle is awfully puny again. She is very winded and breathing heavy and fast even when she is asleep.

However, tonight is her Jr. Prom, and by golly, she will go. We will dress her up and she will be lovely. Her dress will match Jeffrey's tie and cumberbund exactly. I don't know that they will dance the night away. Maybe they will dance and sit and dance and sit. But, CF can't have her prom.

So, on Monday, I will call Dr. Sindel and see what we can do. She is scheduled for a follow-up appointment on April 24, but that won't be soon enough. We'll do what we have to do, and now that I'm writing again, (Thank you! Sanity!), I will post the updates here.

But, I really didn't mean for this to be about the medical side of CF. This is about that sweet, smart, silly boy who shows up at my house regularly, and even brings laundry down and helps take care of Micah. Jeffrey loves Dan, and Dan loves Jeffrey. And, I'm glad. I wanted Danielle to experience everything that life has to offer, and teen love is part of that everything. In fact, when you are a teen, it is everything. However, when Danielle was a baby and I was struggling to make her choke down enzymes in applesauce, I never considered there would be a boy someday who would love her and worry and feel helpless and be looking for answers too. I never considered there would be a boy who would ride with me to the hospital to visit and who would want to go to CF clinic to see how it all works and meet her doctor, just like when he had to stomach the courage to meet her dad for the first time. I never considered Jeffrey... And, I SO wish that I could be more of a comfort to him. Last night, he looked at me and asked, "Is she O.K.?" How do I say, "I don't know"? We have never had a time like this when the illness has just lingered for months. We have never had a time when Psuedomonas Aeruginosa hasn't been tamped down by antibiotics. Usually Dr. Sindel puts on his cape and brandishes his super powers and is able to keep Psuedomonas at bay.

Right now, I'm immersed in a program called Conscious Discipline by Dr. Becky Bailey. I won't go into that now... That's a whole 'nother blog on its own... But, one of the things we are encouraged to say to children instead of "It's O.K." is "I know it's hard. You can handle this." But, I don't want to say that to Jeffrey. I DO know it's hard. I know it's hard to be scared. I know it's hard when Dan is cranky and short tempered and you think, "I don't care if you do have a chronic disease, don't bite my head off like that!" Yes, we all know it's hard. What we don't know is, can we handle it? I believe that God will give me the strength to handle what is mine to handle. I believe that God will give Jeffrey the strength, too. But, somehow saying, "You can handle this," seems to negate the understanding that I know how he feels. I, too, hold my breath and wait to see if I can handle it. I watch myself wondering what I will do and how I will walk through the trepidation and fear... What I really want to say to Jeffrey is simply this... I don't know what is going to happen. This has been a fantastic emotional journey, and I am so happy and grateful that you have come to be a part of my family. Thank you for loving my daughter. And, no matter what, I will be in this with you. This is hard, but we are in it together.

Republishing My Blog

2009-04-13T18:50:00.000-07:00

I am going to repost my blog for a while. My lovely co-worker and assistant teacher, Ms. Leggett, has chosen to write a paper about cystic fibrosis for school. Thus, she may find some of my information useful, or perhaps just plain zany. I have missed writing, so I may add a couple of thoughts here and there. Be on the lookout! ;-)

Speaking of CF... This has been a rough couple of months for Dan. Please hold visions of perfect health for her. She is recouperating, but we have really reached a plateau with regard to the effectiveness of the I.V. antibiotic therapy. This is when I start running to the Health Food Store and studying up on VooDoo Chalk Circles and such... If it might work, I'm willing to try it. But, this is also when I rest in that quiet place... When I try as much as I can to "Be Still and Know". I'm not always great at it. Friends help me, know with me and love me in my infintile spirituality. And, I so appreciate it.

Namaste'~ Christy

2008-11-15T04:08:00.000-08:00

Yesterday I received an e-mail referencing an article written about teachers who have received disciplinary action based upon Facebook postings. I have also heard a lot of whisperings about a local teacher who got in the same type of trouble for MySpace pictures. Part of me screams, "What about my right to free speech?! Freedom of press?! Freedom to have a life apart from school?!" But, another part of me simply asks, "How important is it?" If Dave and I have learned nothing over the past couple of years, we have learned that you can never tell what someone will take offense to.

Initially, I was going to go through and remove only the postings that had anything to do with school; however, reading them all became a daunting task. Then, further, I realized that people might find some of my other postings offensive in some way. Teachers are being held to a higher standard of accountibility. So, I removed everything.

I don't write this blog anonymously. I write it large and loud with my opinions blaring behind photos of me smiling. Kind of like I am in real life, actually... Mom had a saying growing up... "If it's worth doing; it's worth talking about." Further, I like myself (sometimes too much) and the person I am becoming. It has taken a long time to get to this place in my life. Still, because it has taken me a long time to get here, I don't wish to mess up my career at this juncture. I also don't wish to harm any of the people I work with who I have grown to love.

So, working with the spiritual idea, "No one or no thing is against me," I'm choosing to embrace this opportunity for change. I love to write. It's a hobby. It's a passion. It's a compulsion. But, I will just have to choose a less public venue. Or, maybe I will write another blog anonymously, and strictly use this one to post family photos. Maybe I'll write children's stories and post them to this one. Maybe I'll only write about our struggles with that ever present villian, Cystic Fibrosis. I don't know... I just know that you won't be reading about my adventures in "Making It Up As I Go Along" because I need to eat, and I need my bosses to keep those paychecks coming... Perhaps one day, I'll be writing professionally in some way, and I can be held to the less rigorous moral standards of a writer. Until then, I'll just be a teacher with big ideas and a filled-to-exploding journal.

Wishing you all well! Namaste'~ Love and Light, Christy

Soup from a Stone! Imagine That!

2008-11-06T19:34:00.000-08:00

Stone Soup:

Ingredients-
Stew Meat
Basil
Garlic
Onion
Beef Boullion Cubes
Water
Salt and Pepper
Canned Vegetables-
Tomato Sauce
Green Beans
Peas
Carrots
Potatoes
Corn

Directions-
Run to Jerry Lee's the night before and buy two large packages of stew meat in the hopes of feeding everyone, since you don't remember whom you have invited. Also, purchase extra canned vegetables and juice since you aren't quite sure who will actually bring the items assigned in class. (At Jerry Lee's- Avoid former students and that one annoying parent who wants to talk to you about discipline issues at the middle school over which you have absolutely no control.) Leave bags in the trunk of the car to avoid having to haul grocery bags out in the morning.

Upon returning home, dig out the crock-pot and plug in. Realize you left onion and garlic in the trunk of the car. Run out to get them. Chop onion and add to pot. Add about 2 Tbsp of garlic. (For convenience, use the kind in a jar, already chopped. Because of this, listen to crap from your husband about how inferior the garlic in a jar is versus his "I lived in Italy and always use fresh garlic" stance. After inviting above referenced husband to chop the *#%$#&* garlic if it is important to him, he declines and wanders out of the kitchen.) Realize you left beef boullion cubes in the trunk of the car. Run out to get them. Add 4 cups of water and 4 cubes of beef boullion. Add salt, pepper and basil to taste. Cook beef overnight.

Pack strainers, big spoons, can opener and anything else you can think of in the Burnham’s Drugs bag. (The day before the bag was used to receive an I.V. medicine delivery.) In the morning, scramble around like a mad woman. Feed and dress your new baby, and make sure her bag is packed for daycare. Get everything ready and pat yourself on the back because you are SO totally together. As you are backing out of the driveway, realize you have forgotten the crock-pot full of stew meat. Slam the car in park. Run back into the house and retrieve the crock-pot.

As you are turning out of your street, the crock-pot meat sloshes over into the baby seat base where you have precariously balanced it. Instruct your middle-schooler to unbuckle her seatbelt, squat in the front seat and twist to hold the pot and lid in place. Drop middle school child at the door of the bus behind the school so that she doesn’t miss the bus necessitating your driving her to school for the second time in a week. Drive to the front of the school with one hand on the wheel and the other twisted into the back seat, holding the crock-pot lid steady.

Enter the school dragging the wheeled crate packed with the Burnham’s bag of Stone Soup supplies. Help students maintain control despite feelings of electric excitement floating through the air. Complete relevant nutrition activities with students to kill 2 hours until time to begin making soup.

Watch in amazement as your co-teacher manages to effectively steal numerous lovely centerpieces and decorations from various locations around the school. Marvel and applaud her proficiency and procuring these items.

Divide meat into three crock-pots. Assemble students with special needs in a half circle around table. Add a stone to each pot. Call students one at a time to open cans and add ingredients. Be prepared to catch cans as they fall off the can opener, as students don’t understand the concept of holding the can lightly with one hand while operating the can opener with the other. Help students strain vegetables prior to adding to crock-pots. As you open the corn, notice it is creamed corn instead of kernels. Say to yourself, “What the heck,” and add it to the soup, anyway. Continue adding vegetables. Decide there isn’t enough water and pour previously strained vegetable juice haphazardly into the crock-pots.

Pay attention to anyone picking noses or putting fingers in their mouths. Instruct them to leave immediately to wash their hands. Apply Germex liberally upon their return to class.

As students gain an understanding of how to add strained vegetables, instruct student with a significant disability to add tomato sauce. Student opens the can perfectly, (as with vegetables). Everyone applauds his success. Student promptly turns and empties tomato sauce into the strainer. Grab the strainer quickly and salvage as much sauce as you can by dumping it quickly into the crock-pot. Have students take turns stirring soup. Attempt to control the slosh factor as much as possible. This is a fruitless effort. Use liberal amount of paper towels to sop up the mess. Keep crock-pots covered on low until guests arrive.

Breathe a sigh of relief as guests arrive and the whole thing goes off without a hitch. Bask in the glow of another year of Stone Soup.

Hi Ho, Hi Ho! It's Back to Work I Go...

2008-10-04T08:22:00.000-07:00

Yesterday, I took Micah to First United Methodist of Pascagoula, her new daycare center, to meet the ladies who will be keeping her and drop off supplies. Next week, I will take her on Monday, Wednesday and Friday for half days. I'm not sure if I am trying to transition her or me... Maybe both... Mom, Dave and I visited the center before after it was recommended by my friend, Jeannie. It is very nice, and everything is brand-new. The center also received an endorsement from Ms. Renfroe, Sarah's kindergarten teacher. Given that Ms. Renfroe's approval is akin to that of Mr. Rogers, Captain Kangaroo and the teacher from Romper Room, I can rest assured in knowing that Micah will be well-loved and cared for.

But, it doesn't make it easy. I have been trying to find the words to explain how hard it is to leave her, but I keep coming up short. When I was living in Virginia Beach, I stayed home with Dan for the first 6 months or so... Then, after Sarah was born, I wasn't making enough money teaching preschool to make it worthwhile financially to put them both in daycare. I went back to work and school when Sarah was 10 months old, creating a need to seek childcare for her. I remember it cost $115 per week. Danielle was enrolled in a free preschool program called Early Discoveries. The unsubsidized student loans I took out went to pay childcare expenses so that I could finish school. But, by the time went back to work, both girls were at least 6 months old. And, I was working at the YMCA, which is where the girls attended preschool and daycare. So, even though the girls were attending daycare, I was nearby. I was involved in their programs. I knew their caregivers, sometimes intimately.

Micah will be 8 weeks old on Monday. And, I just feel so torn about having to leave her. Even though, everyone I know and trust praises the program, I am still leaving her with people I don't know. Because I taught preschool for such a long time, I know what to look for. I know she will be in a quality program. But, I am going to miss her terribly. She smiles and laughs now. She cries when I walk away if she wants me to pick her up. I know that she burps best sitting straight up and having me lift her in and up and down motion, followed by patting her back. I know that she hates to have anyone mess with her feet. She sneezes in the bright sun, just like Danielle does... And, she loves to wrap her fingers in Sarah's hair, getting and handful when she can. If she kicks her feet and fusses, her tummy hurts. I also know that she sleeps best on her tummy, even though doctors and researchers say to lay babies on their backs. She loves to take baths. And, if she is screaming in the car, popping in Jeremy Camp's Christian Rock CD quiets her immediately. (Yes, it is a weird and amazing phenomena how quickly she gets quiet...) All of these things I have learned about her by being there day in and day out for the last 8 weeks.

So, now... Someone else will learn things about her. She will be in a different environment, so there will be new things and people to either like or dislike. And, I won't be a part of it because I won't be there. There's really no other way to say it. So, is it jealousy? Is it worry? Is it fear of the unknown? Maybe I'm feeling a little of all of that. I have friends who have talked about how they couldn't wait to get back to work and freedom. Being a stay-at-home mom is a gloriously thankless job. I understand my friends' point of view. But, know that I am not experiencing that in the slightest. I'm not yearning for freedom. Even when I am frazzled because she is screaming, I don't want to be anywhere else.

I'm sure that I could figure out a way to bag work for a year. We could cut back on a lot of expenses and make it work. But, that has never been the plan... I have a great career and a wonderful job situation that I worked hard to achieve. I work 2 minutes from my home, and work with people who have become dear friends. They have supported me and my family through all the trials we have experienced. And, Micah deserves to have this support system in place, just as Dan and Sarah always have. The reality for me is that God has always supported me by working through the people in my life. Of course, the people have changed over the years, but those changes have felt God-directed. So, I have been praying a lot. And, the Guidance I am getting so far is to send Micah to daycare and go back to work. Frankly, the Guidance is ticking me off.

What I want to do is much like what I wanted to do when Dan was a baby. I decided that I wanted to be a stay-at-home mom. I was listening to a lot of Dr. Laura at the time... So, I decided that I would stay-at-home, make clothes, use cloth diapers and grow tomatoes in the backyard while wearing a big, floppy straw hat. The reality of the stay-at-home experiment: I can't sew and my attempts at making baby clothes resulted in cloth sewed together randomly with long string hanging out in strange and curious places... Cloth diapers would stay in the diaper pail until mold grew because I wasn't motivated to get in there and wash the nasty things daily, as required... Tomatoes? Plants are a challenge for me. I hate to get my hands dirty digging around in the dirt and I water plants only as an afterthought, if they are in my face dying... I don't really have a stay-at-home mom bone in my body. Truth is... I am far more productive and together when I am working. But, I don't like that truth about myself. I want to grow a stay-at-home mom bone; however, if I'm honest, I haven't grown one and I don't really look to sprout one in the near future.

So, I feel a little guilty too... A little guilty that I don't have what it takes to stay at home. Then I start to tell myself that I suck as a mom... And, that isn't a Godly thought. The God that I know loves me and doesn't think I suck. So, it is time to head back to work. Just know that during this transition time, I will be drinking in Micah... Smelling her, and holding her, and watching her... And, hoping that one day, when she has a baby, I can stay at home and keep my grandchild...

Namaste' ~ Christy

I Have a Really Hard Time Not Taking a Bite

2008-09-22T06:42:00.000-07:00

Micah after her bath!

She is so pretty in a bonnet! Dan and Sarah can't stand any kind of hat on her.

Aunt Micki and Micah!

I'm so proud of this sweet baby.

Calm and quiet.

She is starting to talk.

Daddy is adoring her in the hospital.

Rather than stirring controversy, I thought I would post baby pictures. She is so precious and we are so lucky... And, NO, she doesn't look anything like me...

New Baby, No Time...

2008-08-24T09:04:00.000-07:00

Well, Dave informed me the other day that I haven't blogged in a while. Two things are pertinent about that comment: a. Baby Micah joined us via c-section on August 11 and takes up lots of my time, and b. Dave has time during the day at his new job as Assistant Director of the Applied Technology Center to check my blogging progress. Both things have been great blessings in our lives. The baby is such a joy, and we are all enjoying every minute of having her here in the world with us... And, Dave loves his new job with all its challenges.

Having a baby at my "advanced maternal age" has been such a wonderful blessing. Danielle was born when I was 23 and Sarah when I was 26. Both girls were prenatally diagnosed with Cystic Fibrosis, so both pregnancies were riddled with a whole host of concerns. With Danielle, I felt apprehensive and under prepared much of the time. It was like someone said, "Here is this fragile, little baby with a life-threatening illness. She was supposed to die upon delivery, or at best, be very, very sick due to a ruptured intestine and meconium ileus. However, somehow, her intestines healed, so try not to kill her at home." With Sarah, I was a little more relaxed, but she, too, had many challenges as a baby including coughing up blood at a relatively early age... There were all the daily duties of giving enzymes and the whole host of other meds... I also had to "beat" them several times daily (chest physical therapy). Later, we added the routine of nebulizer treatments. But, I became accustomed to the routine and never knew anything different. I also developed a strange sense of gratitude that both of my girls had CF. Given their closeness in age, I think there may have been some emotional difficulties we never had to face had one had CF while the other didn't. With Dan and Sarah, they have always been in it together... Mind you, I don't wish the disease on anyone, but I also know that having CF is a part of each of them, genetically. And, I wouldn't have wanted any other children... Even if I could have traded for a "healthy" child. I have always felt "chosen" by God for the honor of being their mom; so, even though I have periods of feeling terribly inadequate for the job, I have always felt grateful that God gave me Dan and Sarah. I value them for the people they are, CF and all...

But, back to Micah... She will be two weeks old tomorrow, and she doesn't have Cystic Fibrosis. After the c-section in the hospital, I was a little loopy on Demerol. Dave was the perfect husband, by my side every step of the way, and doing a fabulous job taking care of the baby while I was unable. I looked over and saw him feeding Micah a bottle. My first instinct was to ask if he had given her enzymes. It just seemed odd to feed a baby without worrying about enzymes first. Although, the other day, Micah seemed to have a tummy ache, so I gave her some CPT, and it actually seemed to comfort her. I remember it calmed the girls' tummy troubles along with clearing their lungs. But, the rest of the routine seems so easy. No meds... No treatments... No feelings of being absolutely inept and ill-equipped to handle the new addition to our family.

Other things have changed too... The girls are a tremendous help with Micah. They dote on her and are clamoring to hold her and help any way they can. Dave and I tried for such a long time to have her that we are valuing the experience of having a baby much more. But, beyond that, I have changed. I'm calmer than I was in my 20's... And, I realize that time goes so much faster than it did in my 20's. With the girls I seemed to always find myself thinking, "If I can just make it through this phase..." With Micah I find myself thinking, "I want to savor every moment..." I realize that every moment is precious and seriously fleeting. I don't want to miss a thing. (Hence the reason I haven't necessarily been blogging, or doing much of anything else except experiencing each and every moment with Micah.)

My own recovery from surgery has been a breeze too. I just find myself thinking, "I'm a little uncomfortable... This won't last forever." The challenges of breast-feeding don't seem so earth-shattering either. All the things that rocked my world with Dan and Sarah, are much easier to handle with Micah. And, I think it is simply because I am older. I understand that time passes so quickly. It is easier to value to blessings inherent in the moments, rather than focusing on the negative aspects or challenges.

After all, Danielle turned 16 on August 10th. She received her dad's fixed-up Volvo for her birthday, and has moved succinctly into her Junior year of high school. And, I rub my eyes, as if waking from sleep, wondering when this happened... When did she become old enough to drive? What happened to the little girl who used to hop around the living room like a frog? Where is the 4th-grader who yearned to have two front teeth like all the other kids her age? Did I miss it? Was I just trying to "get through a phase"?

I think I did the best I could... But, I was ill-equipped with youth to enjoy my babies the way I am currently with Micah. I kept hoping for something different... Praying for good health... Wishing for a different, better something for my beautiful girls... Now, I realize there isn't anything more, or different or better. Right now is the moment that is full of beauty and wonder and everything I need to pay attention to. I don't want to miss it! I don't want to miss a thing...

The Little Red Hen

2008-07-17T05:00:00.001-07:00

Sunday, our minister told the delightful story of "The Little Red Hen". This Russian folktale is meant to remind the reader of the importance of hard work, and that in life, you can't get something for nothing. I understand that. Generally, I love fairy tales and folk tales. In my classroom, I often use them as teaching tools. So, I understood exactly the message she was conveying in her sermon...

However, my brain rebels. My spirit rebels. My very emotional nature cries out in rebellion, "SCREW YOU, LITTLE RED HEN! You found the grains of wheat! You decided that you wanted to plant it! So, you live with it and do it yourself. Don't try to suck me into your plans!" This all goes back to my latest spiritual struggle with the concept of "one more thing". I think I have actually blogged about it before... I really hate for people, or the universe, or circumstances to assign me "one more thing" to do.

I mean, I can relate to the "lazy cat". What if the cat isn't really lazy? The Little Red Hen, after all, is a known busy body who thinks she knows what is best for everyone. She looks around, sees the cat stretching and lying down to take a nap, simply assuming that the cat is a lazy do-nothing. What if the cat is running around the barnyard to keep the rodent infested place free of disease? The cat, then, only takes a nap out of sheer exhaustion after a morning of chasing mice, trapping mice and catching mice... Mice! With their nasty little whiskers and scratchy little claws clamoring all over the barnyard nibbling holes into those tasty bags of corn that The Little Red Hen just takes for granted will be scattered daily for her and her chicks to enjoy. Mice pooping all over everything, spreading bacteria and filth and disease all over the barnyard! Maybe the "lazy" cat meowed exhaustedly, "Not I" when asked to help out of a feeling of being overwhelmed and purely exhausted.

And, what of the dog? Isn't he out herding sheep all day? He is running around like crazy keeping the sheep from straying too far into the meadow. I even heard that he came face to face with an insanely criminal wolf who had dressed himself in sheep's clothing. The dog is thinking, "I didn't realize I had to be an undercover agent for this job!" But, he rose to the occasion. He sniffed out that wolf, despite his clever disguise, and chased him off so that those sheep might live another day. He had only just wandered back into the yard when that prissy Little Red Hen was all over him, "Who will help me reap the wheat?"

"Reap the wheat? Reap the wheat? I didn't ask you plant the damned wheat in the first place! Reap it yourself!" is probably exactly what our extremely weary friend was thinking. Haven't you ever heard the phrase, "Dog-tired"?

And, finally, the duck... Why couldn't she help? I mean, they are both birds. Surely they could have forged some sort of partnership based on their fowl status alone... I probably shouldn't share this, but I think under these circumstances, it is necessary. The duck has serious emotional and mental problems. The duck, had a nest to sit upon each and every day. However, she also believed wholeheartedly that it was her duty to paddle around the pond each day, working hard to present an image of perfection and serenity to all who gazed upon her. While she floated gracefully along atop the water, people were unable to see all the paddling she was having to do beneath the surface. You see, although no one told her, the duck felt it was her job to present an image of peace and harmony to all who visited the farm. No one guessed how hard her poor little webbed feet were working beneath the surface just to keep herself afloat. Thus, each day, after working hard to present this picture of perfection, she returned to her nest to sit, nurturing her eggs and waiting for her precious little ducklings to hatch.

One day, she came back to her nest to find an extra egg there. It was absolutely huge! She had no idea where the egg had come from, but she knew that the life inside could not survive without her ministrations. Well, you know what happened from here... Her ducklings hatched and she proceeded to rear her precious ducklings as best she could. (Most people don't know this, but her husband had run off with that terrible Goosey Loosey, so she was on her own with the ducklings.) She was also doing her best with the large, gangly gray adopted duckling who didn't fit in with any of his siblings. Most days, the duck dragged herself to the fence line where she received free counseling from the kind cow. These talks were the only thing really helping to hold herself together since the stresses of single motherhood, rearing a whole brood of children (along with one adopted one), and doing all of her duties while trying to maintain an air of peace and serenity for onlookers nearly drove her to the brink of insanity!

So, when The Little Red Hen approached her, her eyes welled-up with tears and she hung her head in shame. She felt that she should be able to help, but she just didn't have another ounce of anything to offer to anyone... She was emotionally, physically and spiritually drained.

These are the thoughts that ran through my mind in church on Sunday as my minister spoke. Obviously, they had nothing to do with the intent of the lesson. But, they provide a basis for understanding my own personal spiritual struggle as of late. And, as much as I can justify why the cat, the dog and the duck couldn't help and how demanding The Little Red Hen was being, there is a lesson in here about humility for me, personally. If I believe that God works through people, then I have to believe that God manifested in the form of the Bitchy Little Red Hen, too. The cat, the dog and the duck, (all me), even though they have numerous good reasons for not wanting to help, are still exhibiting behaviors steeped in selfishness and self-centeredness. Only in being willing to join in with God's other people to do "extra" assignments He presents daily, am I able to experience true peace and serenity that comes with the humility of being willing to rise to whatever occasion with which God is presenting me.

Spending so much time in mental or emotional rebellion is more exhausting than doing "one more thing". If I can learn this... If I can really "get" this idea about trusting God to give me the strength and abilities I need to do the things that cross my path daily, with an attitude of gratitude and loving service, I will be so much more peaceful and serene... Some days, I'm there... Some days, I'm just faking it, like the duck. Which, I guess, is O.K. too.

All of that being said, I know I also have a tendency to take on too much at times. Thus, being compassionate to my cat, dog and duck selves is important, as well. There are times when I need to say, "Not I". However, that means that I don't get to eat any of the bread when all is said and done.

But, the really amazing thing is when I have true moments of greatness. There are times when I can be like The Little Red Hen, only at the end of it all I can say, "I know you didn't help me plant or sow or reap this wheat. I know you didn't help me grind the wheat into flour. I know you didn't help me bake the bread... But, please, join me anyway... I would love to share my bounty with you because I am so terribly grateful that you are all here. Thanks for taking care of the mice, Lazy Cat. Thanks for herding sheep and scaring away wolves, Lazy Dog. Thanks for rearing your ducklings and working hard to mother a duckling that isn't even yours biologically, Lazy Duck. You all enrich my life. For that, I am grateful. Come rest your weary bones with me and have some bread."

Happy Birthday, Sarah!

2008-07-06T06:15:00.000-07:00

Today is the day that I have become the mother of two teenagers. Dan has been a teenager for a while, but Sarah embarks on her journey today, as she turns 13. She is already well on her way... In fact, in some ways, Sar dived headlong into all things "teen-agery" even more than her sister.

Sarah isn't my easy child... She is the child who evokes a response... She is the child who forces me to flex my parenting muscles. She is the child who brings me closer into my relationship with God because I never know for sure that I am doing anything "right" with regard to her.

But, Sarah is also the child who needs me... Not because she is dependent, but because something about me is able to soothe her soul. And, amazingly, something about Sarah speaks to my heart like no one else can.

When I cleaned Sarah's room when she was a little girl, it was always a fascinating experience. I would find plastic containers full of magical potions (mixtures of shampoo, conditioner, mouthwash, glue and finger paint). I would also find purses full of treasures like sweet gum balls and pine needles. She always had tons of notes folded up everywhere that gave insight into the workings of her mind... Little lists: 1. Call Kevin. 2. Pet Susie. 3. Play in the red dirt pile. I could never decide if I was horrified at the level of mess, (although there was always a strange, systematic order to Sarah's mess), or if I was completely in awe of stepping into her giant, child-sized mind for a while. Maybe it was a little of both.

This past year was one of worry and fear for me as far as Sarah was concerned. She seemed to get sick around every bend. We spent a lot of time in the hospital and even more time doing I.V. meds. She wouldn't eat... She wouldn't drink Ensure... Rebellion dogged her every step. Nothing I did or didn't do seemed to help. I developed an understanding that while, as a parent, I have a responsibility to lead, my children have no responsibility to follow. Further, sometimes maybe facing their own consequences is exactly what they are supposed to do. The problem that pervaded my mind daily was the fact that Cystic Fibrosis has startling and lasting consequences.

And, now, with the onset of summer, her weight is up and her lung functions are better. She is doing the things she needs to do to be well and healthy. She has also been a tremendous help to me during my pregnancy. It's as if the sun came out, and we can see the path more clearly.

Certainly, I feel relieved... But, as I reflect on Sarah on this special day, I more fully understand that she is on her own spiritual journey. She is certainly a part of mine, but as she grows older, hopefully the lessons will become more her own. Or, maybe the lessons have always been hers and I have just taken them too much to heart.

So, Happy Birthday, Sarah! I'm so grateful you came into my life 13 years ago.

Better Living Through Chemistry

2008-06-29T14:56:00.000-07:00

So, I just finished reading some of my sister-in-law's blog. I need to make time to really sit down and peruse the whole thing. Many of her recent entries are related to a variety of psychotropic drugs being regularly prescribed along with side effects, etc. Interesting stuff, really. We are such a "better-living through chemistry" society. And, I have to add that I have taken anti-depressants during my life. When Dave and I started trying to get pregnant, I stopped taking Wellbutrin. And, mostly, I have been O.K. I wasn't willing to risk side effects to my unborn child, even though multiple doctors conveyed that remaining on antidepressants is perfectly safe. I just don't always have the most faith in the long-term effects of such things, even if professionals are trying to convince me otherwise.

I began taking antidepressants after separating from Danielle and Sarah's dad. I was enrolled in college full-time, working full-time, and was attempting to rear two children with CF. Further, I had taken my grandmother to the hospital for chemotherapy treatments after a diagnosis of pancreatic cancer. Talk about your toxic drugs! I remember reading about the treatments during her admission and asking, "Grandma Dot, are you sure you want to do this? I'm not really sure this is a good idea." And, it turns out I was right. The chemo killed her. After sitting idly by, watching her deteriorate, I broke down in my therapist's office. (Yes, I'm sure you are relieved to hear I was receiving professional therapy at this point in my life.) My therapist, a completely savvy woman, listened to my current state and decided, "Wow, you are depressed." And, after referring me to a shrink (because a psychiatrist has the letters after his name allowing him to prescribe drugs), I was placed on Wellbutrin.

I have no criticism of the drug. It was a miracle for me at the time. It allowed me to go about the business of my life without bursting into tears for no apparent reason. It allowed me to finish papers late at night and made it possible to crawl out of bed every morning without cursing the sun's existence. I believe I desperately needed it at the time. I also believe that I no longer need it. I believe that God is doing for me what I could not do for myself. And, I believe that any problems my baby may or may not have will not be as a result of me taking any type of drug.

Now, all of that being said, I believe drugs are extremely necessary in my life at this point. And, I mean, bring on the drugs! The heavier-duty the drug, the better... Given that I am such a hippy and so into yoga and alternative therapies, some may be shocked to read this. But, I can't help it. There are times when heavenly, blissful escape is all I can think about. There are times, several of them occurring this very morning, when I crave the easier, softer way that I believe drugs can offer. Keep your 12-step meetings, your Serenity Prayer, your slogans... I know you are well-meaning, but I have tried all that and have met with incredible failure. It is not working, even though I'm trying to work it. Thus, in my desperation, I'm willing to dive into the better living through chemistry pool, in an attempt to find sweet, sweet relief.

Last night, Danielle caught Dusty, one of our three cats, peeing on the rug in the kitchen. She put her out, but I am at my wits end with these cats. I have been working feverishly to get the baby's room ready and have had to clean cat pee daily. These cats are peeing all over my house. And, I am grossed out. I'm freaked out. I just can't stand it anymore. The Internet reveals that the cats are under emotional distress. Often, with the arrival of a new baby, cats can become anxious. The Internet also states that homes with multiple cats have more problems with spraying and "naughty bathrooming". But, regardless of the reason, it is SO nasty. I have waged full out war with Clorox wipes and multiple cleaning products to no avail. And, alas, while the Internet pet doctors talk about how sad it is that people turn their pets over to the Humane Society citing that cats peeing in the house is the number one reason people get rid of their pets, they are offering no real reasonable solutions for my family.

Last weekend, after cleaning cat pee off of the baby's new changing pad (yes, note the irony) I laid down the edict that cats were to stay outside. After calming down, Dave tried to talk to me about how hard it would be to keep them outside all the time. Thus, in an attempt to be reasonable, I conceded that we should stop at the pet store to get the pheromone spray, which is reported to make cats feel all warm, fuzzy and secure so they don't feel a need to pee on my stuff. It seemed kind of homeopathic and natural, so I was willing to give it a try.

But, this morning, after Dusty was thrown out for the night and I sprayed the warm, fuzzy spray on the area where the carpet had previously lay (since I have to wash the @#$#@ thing again!), Dusty was allowed back in the house this morning. She lay in wait for Dave to leave for the gym, hopped on the counter top and peed all over my kitchen counter and further sprayed her villainous odor all over the coffee pot. IT WAS REVENGE PEE! Not wishing to drink cat pee, I poured out the coffee, fully disinfected the area and scoured the counter top. But, I am obviously very upset and at my wits end.

Dusty was left outside when we went to church, and feeling a little more spiritual, I decided to pray for all of the cats during our prayer circle time at the end of the service. Lo and behold, upon arriving home, I was greeted with cat pee on the back mat when I entered the door. GARFIELD! I CAN'T STAND THIS! THEY ARE PEEING ON EVERYTHING AND I HAVE TO BRING A BABY INTO THIS FILTH. I guess my prayer went unanswered, or God said, "No", or God said, "Wait." I don't know what God said, but I know cat pee awaited our return from church.

So, I have Googled all the information I can find, and the only acceptable thing I can find to do is drug these cats. There is something called Kitty Prozac, and I say "Bring it on." Dave is ready to allow the cats the opportunity to experience the next life, but I am willing to give this a shot. Dave also revealed how his brother, Keith, gave a parrot, who was plucking out all of his feathers, a couple of drops of whiskey in his water and the parrot was miraculously cured of the plucking behavior. I am not above trying a kitty cocktail either. We don't have any alcohol in the house, but a trip to the liquor store may be warranted. I mean, I'm up for anything. Kitty marijuana brownies... Kitty heroin... Kitty Valium... While I am committed to sobriety, do my cats have to be?

The thing is... Dan and Sarah absolutely love their demented, peeing cats. Dusty is a cat we adopted for Dan as a Christmas present. She howled the entire time during the car ride home when Dave and I drove to Mobile to get her. We should have known she was mental that first day and turned around to return her, but she was so pretty. She is a muted calico with gray, white and light orange fur. She sleeps with Dan every night, and when Dan goes to visit her dad, she becomes upset and sits at my feet yowling as if to ask, "Where is my person?" She doesn't enjoy being petted by anyone except Danielle; although, if Dan is out of town, I make a point to pet her so she doesn't become even more anti-social than she is currently. Garfield is one of the cats we accidentally stole, thinking we were rescuing him. (See my blog entry entitled "Yoga and the Cat Rescue Mission). Sarah chose him and named him because he liked to eat so much. She didn't have a cat of her own, as Dan has always been the cat person, so Garfield was specifically adopted as her cat. He lays flat on his back, legs sprawled in the air, right beside Sarah every night. He is also the most annoying cat we have. He has what Dave likes to call "Other Side of the Door Syndrome". He meows to go out the back door, then runs around to the front of the house and claws the window screen until someone lets him in. He also jumps up and claws the back door, scratching all the paint off in the process.

We also have Suzy. This little, black, part-Siamese cat was adopted by a sweet lady across town who rescued a Mama cat only to discover she was pregnant. Dan earned Suzy because she stopped sucking her thumb once and for all. She is symbolic of a childhood milestone. And, while she was officially Dan's cat, anyone who has ever had a cat knows that cats determine who actually owns them... Or perhaps, they determine which person they own. So, Suzy is my cat. She also loves Dave. She sleeps with us every night, and she is the least crazy of all the cats. While I am not entirely convinced of her complete innocence in the peeing escapades, she is generally well-behaved and ignores the rest of the cats completely. It's almost as if she knows they are nuts and holds herself to a higher standard. Suzy even goes out in the back yard with the dog, whereas the other cats all go out the garage door entrance. She is too cool to hang out with the other cats; she seeks out an entirely different species for companionship rather than lowering her standards to associate with the aberrant creatures hell-bent on spewing filth and stench throughout my living quarters.

I know that I am justified in getting rid of these frustrating felines. Dan and Sarah would probably get over it eventually. My most demanding responsibility is to the baby's health. But, I have a hard time just writing them off. When we adopted/stole the cats, we made a commitment to care for them for the duration of their lives. And, I have a hard time giving them away, or taking them to a shelter, or any other option that might expedite the end of their kitty lives. I think part of me is geared that way. I mean, I have several family members that could be described as emotionally defective, but I don't get rid of them. (I also don't live with them, but I would like to believe if Dave or one of the girls developed a mental disorder that led them to pee all over the house, I would go the extra mile to seek a solution instead of just getting rid of them.) Isn't that what family is about? Sticking together through the rough times? Loving each other in spite of those glaring flaws that infringe on each other's rights... But, maybe a little chemical help is in order to facilitate a little more family harmony.

So, regardless of the side effects, I believe drugging my kitties is in the best interest of everyone... Certainly in their own best interest, when the alternative means a quick trip to Euthanasia Town. Who knows? Maybe all of that Internet baloney about anxiety is true... Maybe these cats are amongst those who really need medication to function reasonably in society. (Like some of the children I teach...) And, maybe, I am beyond caring as long as I don't awaken to cat pee in my coffee.

Summer is Upon Us

2008-05-26T07:14:00.000-07:00

I always listen quizzically to those who are proponents of year-round-school... Not because I necessarily disagree with the concept, mind you, but because summer break feels like such a sigh of relief. School is out in May here in Mississippi, so the entire month feels like an Olympic trial. It is mainly school-related activities that cause the majority of my angst, but some things are seasonally thrown in for good measure to add greater stress. (i.e. family birthdays, Mother's Day, dance recitals, etc.) Thus, as I sit here this Memorial Day, I'm not necessarily remembering and honoring fallen soldiers, I'm just resting and regrouping in an attempt to regain some of the sanity that was necessarily lost throughout the month of May.

Sarah gave and excellent performance in her dance recital this year. However, that came with trials and tribulations of its own. She has spent approximately the last month on I.V. meds. One of the selling points of the port was that she would be able to participate in all of her dance and gym activities without recourse. However, I'm not sure Dr. Sindel was entirely educated on what can happen to an accessed port-a-cath during a back handspring-back tuck combination. After one practice leading up to recital, the needle popped half-way out, causing great pain and an even greater sense of drama. We had to pull the line and miss two doses of meds before Nurse Tammy, our homehealth nurse could come reaccess her. I have been trying to talk her into letting me access her, but she isn't ready for that yet. Our friend, Lauren, accesses herself and I really aspire to that level of independence for Sarah. Even with the ups and downs with the port, Sarah didn't have to be hospitalized in May, which might have very well sent me completely over the edge, as I had a loose grip on sanity and serenity in general at the time.

Danielle also gave and excellent performance in her band concert. She had two solos and performed flawlessly. She also made Symphonic Band next year, so she is very happy about that achievement. I'm most proud that she managed a "C" in Astronomy after making an "A" on her final exam. She struggled with the course, and after I conferenced with her teacher and determined for myself that he is a complete baffoon, I am really proud that she pulled a "C" in the class. I always tell parents at school when they complain about various teachers that it builds a child's character and intrinsic sense of self-esteem if they are able to cope with whatever teacher they are given. That is an easy lecture for me to dish out educator to parent... Not as easy when my own child is struggling with an incompetent boob charged with the responsibility of providing an education to her... However, I stand by my beliefs. Danielle hopefully learned that she is responsible for her own education, even when her teacher has been unable to successfully impart knowledge to her.

Both girls are struggling to achieve optimal health right now. I.V. meds for Sar, and oral antibiotics for Dan haven't really seemed to make an impact this time. We return to Dr. Sindel's office on June 2nd, so I trust you will keep us in your thoughts and prayers as you read this. Both girls are doing well with their weight, so we are grateful for that upturn of events. Sometimes CF is so mysterious... Especially when the doctor has recommended this or that and nothing seems to be helping. Right now, I'm reading "Lessons in Truth" by Emily Cady. She talks about the "appearance of illness" being outside of the reality of God. If we are created in God's image and likeness, truly an expression of God's spirit, then only in aligning ourselves with that Presence and Spirit can we expect to break through the appearance of illness, lack, poverty, or any other image that seems "less than". I continue to pray and meditate upon that idea, and lead the girls in affirming that idea. But, I'm certainly not perfect at maintaining that level of consciousness, when the appearance of illness rings with such clarity in the form of hacking coughs throughout the house. However, I know that I don't have to do it alone, and I trust that those who are praying with us and for us often have greater faith than I.

I also go back to the doctor on June 2nd for an ultrasound. The baby is moving all around. I can sit and watch my belly jump as she moves around and kicks like the Karate Kid. I went to Maternal-Fetal medicine last month to have a "level 2" ultrasound because of my "advanced maternal age", which the doctor kept referencing much to Dave's delight. The funny thing about it all is that I have enjoyed this pregnancy much more as a result of my "advanced maternal age". I was 23 when I was pregnant with Dan and 26 when I was pregnant with Sar. The morning sickness, the swollen feet, the fatigue... All of those things seemed like they would last forever. Now, that I am 38, all of the symptoms of pregnancy, while annoying, don't seem as overwhelming. I know that it is really such a brief time and that the whole experience will be over before I know it. That realization has helped me to enjoy the experience more than when I was younger. I don't mind sharing my body as much.

Dave has accepted a job as the Assistant Director of the Technology Center. He has wanted to work in administration since receiving his Master's degree in the field, so I am very excited and happy for him. Currently, he is fulfilling his last teaching responsibility by writing next year's math curriculum. However, he seems to be handling the change much better than I would. He has been a little sad or nostalgic about not coaching next year, but otherwise he seems ready to embark upon his new path in educational administration. I'm sure he'll be brilliant. I mean, he is brilliant already. He's also extremely forthright, so I pray that he will be able to hold his tongue when it is pertinent to do so.

Anyway, I hope you will join me in a deep cleansing breath as I relax into everything that is summer. Upon reflection, I'm not exactly sure I will regain any sanity. I have only a nodding acquaintance with the concept. But, serenity and clarity of thought seem to be a little closer within reach, and for that I probably won't ever endorse year-round-school.

~Namaste'~

He has Ears!

2008-05-03T07:38:00.000-07:00

"Does he have ears?" This was the first question I asked when Mom called from the hospital to inform me that I had a brand-new baby brother. I wasn't sure if babies came with ears or if they grew on later. Given I was a mere 3 1/2 years old when he was born, I wasn't exactly sure what I was dealing with, but my earlobe fetish presented full force, even back then.

I always knew my brother was destined for fame, fortune and greatness. I knew that right from the start. He was absolutely beautiful, and I was immediately enamored of him. My fascination has never waned... Tom and I are so completely opposite. I was always struggling to be the "good girl"... The one who did everything to please everyone... The child who made parents smile broadly and think, "I am so proud." My attempts at fulfilling that role were often met with feelings of serious inadequacy, given that our home was rife with alcoholism. Mom always thought we were the greatest, but I didn't have to work hard to please her... It was always Dad that I wanted so desperately to please. Being good enough for Mom was easy. Being good enough for Dad was impossible... So, of course, his approval was what I sought early in life. Alas, most of the time nothing was ever good enough. Imagine the blond-haired, blue-eyed, little girl struggling for Daddy's love walking hand-in-hand with a blond-haired, brown-eyed little boy, who had no use for conventions or rules of any kind. That was me and Tom. He bucked the system from the word "go". He never cared about approval, about pleasing anyone, or about having ironed clothes. He marched to his own beat, and I trotted along sometimes trying to catch his rhythm.

As children, we were inseparable. We developed an unhealthy emotional dependence on one another to survive the chaos at home. There are hair-raising stories that I won't share here, but these episodes only served to bond us more closely together. And, more than anything, we were each others biggest supporters. We fought and played and laughed and yelled. When we were young, a part of each of our identities was reserved as a piece of the other.

With the onset of our teen years, we both became more uncoventional. Tom had always been the rebel, so it was only natural when he began piercing, tattooing and wearing combat boots. I rebelled in other ways that weren't outwardly obvious, and we both remained inseparable. We were an odd pair. Tom traveled with the punk crowd, so I often found myself surrounded by guys with 1-foot-high mohawks hanging at a skate park. My long blond hair, and clean cut manner of dress never seemed to fit, but I was allowed access because of my brother. And, I envied them... I envied him, because he didn't care what people thought. He would not play the game the way society dictated, and I sat in awe of him. I would bounce between being frustrated with his lack of convention, when I wanted him to conform, and jealous of his ability to laugh at the expectations of the world. Tom was weirdly brilliant. He failed in school, but read Walt Whitman. He listened to Larry King on talk radio late at night when he should have been in bed. He tried to introduce me to the genius of ee cummings, but I couldn't get over his shunning of capital letters. He was further frustrated by my lack of reverence for Jack Kerouac and Henry Rollins. He didn't understand my affinity for lip-sincing Madonna, but together, we sang a mean duet of Prince's "Anothalovaholeinyohead".

In our late teen years, we moved in different directions. The unhealthy dependence became a healthier friendship. Our differences were magnified, and we shifted toward our various interests. Tom continued on his path of marching to his own beat. I pursued more traditional avenues. Tom's path included joining the high school drama club and going to Virginia Tech to pursue acting. I was thrilled to watch my brother perform in in different plays. He played Kinicke in "Grease", which was more like type-casting than anything else... But, I remember him playing a character in "Sweet Charity". I think he played Vittorio Vidal (courtesy of Google), but I'm not sure. All I know is that I knew that the person on stage was my brother, but I was also thoroughly convinced that he was an older gentleman. Tom was brilliant. He played his greatest role in marrying his first wife. The wedding was a zany affair and the college students at Virginia Tech all played their parts admirably. It was a wedding filled with characters, and I sat with my new baby, watching as two-year-old Danielle danced with the beautiful people, staring in fascination at the goings-ons. Tom's marriage didn't last, but the wedding was one of the most incredible productions I have ever seen.

Tom's life led him away from Virginia to Nashville, working in various capacities on and around movie sets. He has moved hither and yon... I think he lived in Ohio and then moved to Orlando, FL. Whatever he has done, it has been in some capacity that his unconventional and much less "secure" than anything I would have chosen. There are times when I know life has been harder for Tom than for me. He wrestles with life, and making it work for him. My choices have led me down the road of being the mom of two children with cystic fibrosis, making security and steady income absolute necessities. Tom has lived a different life, moving from place to place and rubbing elbows with beautiful people. And, he doesn't know, but sometimes I have watched with envy. There are times when I know I couldn't live life the way Tom does, but other times when I yearn for the freedom offered by his lifestyle. Mostly, I am content and happy, but sometimes, just like when we were kids, I am so enamored of his ability to only be accountable to himself. He wears "To thine own self be true" like a badge of honor.

Tom has married a wonderful lady, Kim, so he has more ties than normal. Together they have embraced "the life". They work on movie sets, and describe some of the work as "babysitting the stars". It is such a fascinating way to live. We love when they visit, and enjoy hearing all the stories. Although, sometimes I am greatly disheartened when I hear that one of my favorite stars is less than pleasant in real life. Dan and Sarah both love Uncle Tom and Aunt Kim. But, Sarah in particular, is completely enthralled with her uncle. She identifies him as her favorite person in the world. Perhaps because Sarah is much more like her uncle than like me. She has always marched to her own beat, just like her uncle. And, I work on honoring that quality with Sarah, just as I always did with Tom.

Now, Tom has landed a role in a movie about Billy Graham. I am especially thrilled for him. The picture above is from the movie set. Tom plays the doctor that delivered Billy Graham's first child. I think we will make a big family event of going to see the movie. We can't wait! And, I know he will be brilliant, just as he has always been.

Making Room for Micah

2008-04-09T05:50:00.000-07:00

Closets of stuff! Roomfuls of stuff! Corners and crannies and nooks of stuff! Everything has to be removed and reorganized to make room for Micah. She is coming in August whether I am ready or not. So, I would rather be ready; and of course, I think it makes for a better environment if the baby's room is ready and welcoming. Thus, we have all embarked upon the Spring Break Mission called "Making Room for Micah".

This mission has impacted everyone. Dan and Sarah are losing their treatment room. Until yesterday, the girls had a room dedicated entirely to taking their treatments. It had a futon, the vest machine, nebulizers and all the meds (with the exception of the meds that have to be refrigerated- Those are kept downstairs in a special refrigerator just for medicine.) The room also housed a television and VCR, board games, art supplies, a lap top, and a variety of other interesting little goodies designed to keep kids and teens busy during those boring, daily drudgeries called treatments. They have both been very gracious about giving up their room. Now that we have two vest machines, they are able to take their treatments in their bedrooms. Still, this transition has meant moving out of an entire room and adapting to a whole different way of doing things.

I have been feeling nostalgic about the treatment room... After all, it hasn't always been a treatment room. The vest and treatments used to be kept downstairs in the living room. This signified a time when the girls were too young to be trusted to get their treatments independently. (Sometimes I wonder if we are still in that phase... But, mostly, I know they are taking care of themselves so that I don't have to worry myself sick when they go off to college.) When Sarah was small, it was her room. She didn't want the room with the attic door because it "creeped her out". Later, when Sarah was able to handle the idea of the attic door in her room, she moved out and it became a playroom, full of toys and games. I have memories of little girls dressing up in feather boas and gowns... I would go in to clean and find weird concoctions mixed by Sarah. She loved to make potions. Sometimes there would be something really fascinating like a purse filled with rocks and pine straw. Dan would fill page after page with pictures of cats. The room was a place where a child's imagination would flourish, along with their abilities to make colossal messes.

The room evolved again when Mom and J.R. moved in while their house was being built. They lived in the room and redesigned the closet during their stay. After they moved out, the room became a storage/treatment room again until Hurricane Katrina blew in destroying everything and necessitating their return to the room. After rebuilding their home, my parents moved out again and the room was once more relegated to service as a treatment room.

Now, it will be a baby's room. In my mind's eye, it had always been a nursery, until the last evolution. Dave and I had pretty much given up entirely on the idea that we would have a child together. So, this cleaning and organizing has been a reminder of a spiritual lesson. I am always trying to figure God out. I had settled into a certain comfort with the idea that I would have two girls, and that was that... I had even decided that I was really getting too old to manage a new baby, anyway. Dave had come to a level of sad acceptance that he would be a wonderful co-father to the girls, but that he wouldn't have a child of his own. We had really accepted and embraced the idea, and then in November discovered the happy news that I was pregnant. Still, we waited a while before getting our hopes up, since I have had multiple miscarriages. After the 8 week mark and with the onset of morning sickness, it became a little more real.

Currently, my belly is expanding by the day, and ultrasounds (along with her own inner gymnastics) have confirmed that I am indeed having a baby girl. And, we are all scrambling to welcome her. My church family held a wonderful shower for me and Arianna, a dear friend who will be having her baby in May. (See the picture above.) Mom has become a consummate Internet baby furniture shopper. We are all preparing in whatever ways we can, which for now means purging the old to invite the new.

That brings me back to the spiritual lesson... So often I fill my life with stuff that takes up room, but no longer serves me. In the closet, I found space heaters that had been used after the storm, old art supplies, and tons of frames, pictures and memorabilia set aside for that picture project that has been looming for years. Clearing out the past to make way for the future is an important spiritual lesson for me. If I fill my head with old, outdated ideas, I don't have room for new, inventive thoughts. If my mind and heart are preoccupied with thoughts and feelings that no longer serve me, I am stuck in a mess and unable to move forward. It reminds me of the unofficial definition of insanity: "Doing the same thing over and over and expecting different results." Sometimes doing a new thing means clearing away items from the past. Sometimes it means standing still and doing nothing, when every fiber of my being is telling me to "say something" or "do something". Sometimes the new idea means recognizing that some things aren't mine to do. And, much to my chagrin, other times it means doing the things (like balancing my checkbook) that I really don't want to do. But, ultimately, the action or inaction clears the way for a new and wonderful experience in my life.

This time, the new and wonderful will be in the form of a new little addition to our family. However, before that can happen, I suppose I should get back to cleaning out the closets.

Namaste'

Raving Against Stupidity

2008-03-05T12:55:00.000-08:00

I should be working on my National Boards... I mean, I REALLY should be working on my National Boards, but instead I am sitting in the hospital with Sar, finding that I need to vent. I really just want to go home. After all, I can procrastinate on my boards just as well there... Heck, I am an even better procrastinator at home and sometimes things get done like the cleaning of my refrigerator.

For those who don't know, National Boards is a process in which I write 4 entries and submit 2 video tapes demonstrating my exemplary knowledge as an educator. It is quite a prestigious achievement... It is quite a learning and growing process as a teacher. Actually it is quite a crock, but I get a pay increase of $6000 a year for the next 10 years. Further, my license will be good for 10 years if I can pass. So, given that Dan will be turning 16 and a car will probably have to figure somewhere into that equation, the extra money will be helpful for our family. And, I have always been able to wax poetic when need be... But, I am finding myself uninspired. Still the entire thing is due March 31, so I am hoping for some sort of Divine Inspiration, or at a minimum that my ego kicks in with my "I have to be perfect at everything I do, and I absolutely can not fail at anything." However, thus far, I am finding that I could just care less about it.

The thing I do find myself caring about is being stuck in the hospital again. Sarah went to CF Clinic on Monday to find that her pulmonary functions were down again. Also, she had lost 2 lbs. When her little body only weighs 80 lbs. to start with, 2 lbs. really makes a difference. So, Dr. Sindel determined that she needed to be hospitalized to have a CT scan of her lungs and a bronchioscopy to determine what lingering germs are creating this recurrent sickness. She had the scan yesterday which showed a few pockets of thick mucus primarily in her right lung. So, this morning, Dr. Sindel went in and took samples from her right lung, and sent them off to the lab to see what bacteria grows. He also washed her lungs and injected Pulmozyme directly into the places that were clogged. The procedure seemed to go smoothly and Sarah is currently recovering well.

But, we did hit a rocky period. Demerol makes Sar nauseous. So, after we returned to the room, she began feeling queasy. We called for Sophran (an anti-nausea medicine), but our nurse had mysteriously disappeared off the face of the planet. She also began complaining of a headache. So, I asked that she be given some Tylenol. Well, you would think I had asked for a shot of Heroin. The nurses kept saying, "Well, she just took 600 mg of Motrin". To which I replied, "Yes, which she takes every day of her life twice a day; thus, it has absolutely no effect whatsoever on a headache."

Then in breezes the resident (the oncall doctor), who is not at the top of my list since she came in and woke me up at 12:20 a.m. to ask me the same questions that I had previously filled out on the nurse's form upon admisssion. She walked in as Sarah is vomiting into a pink bucket and asked, "How's it going?" Now, I may not be a doctor, but I think this qualifies as an extremely stupid question given the gravity of the situation... Only after her second episode of vomiting did a nurse come give her Sophran. She never did get any Tylenol.

Finally, though, she is feeling better and felt well enough to eat lunch at 3:00 pm. Being in the hospital is an incredibly frustrating because I really believe that I can do a better job at home. Granted, I can't do a CT scan or a bronchioscopy, but other than that, I could do the rest myself... And, we would be in the comfort of our own home without people poking their head in every 15 minutes. Napping is impossible in the hospital. When people call or send of message that says, "Get some rest", I know for sure that they have never stayed here. Home equals rest. Hospital equals aggravation and illness. I guess it is just the focus. And, I am really trying to stay centered and focused. "Wherever we are, God is and all is well." I know this. But, I can move knowledge from my head to my heart better when I am not really tired and aggravated with people asking me dumb questions.

Anyway, I have used this blog experience to procrastinate long enough... Back to Sar, and the park, and putting off National Boards for a little while longer.

~Namaste'~

The Roll Lady

2007-12-09T06:01:00.000-08:00

I entered the cafeteria at Women and Children's Hospital in Mobile just hoping to grab a quick lunch to take back upstairs so that Sarah and I could eat together. When one of the girls is hospitalized I sometimes takes on a floaty, surreal kind of feeling. This was probably my state of mind when I entered the cafeteria... Just kind of on auto-pilot looking to do the next apparent thing, (like eat lunch), and return quickly.

Sarah was hospitalized on Monday. Her pulmonary functions had fallen and she was running a fever. This is the 3rd course of I.V. medications she has had in the last four months. Further, Dr. Sindel has been seriously concerned about her weight and nutrition levels. He is convinced that her lack of weight gain and current low nutritional levels are contributing to her roller coaster of illness of late.

I have struggled with an overwhelming feeling of powerlessness, given I have absolutely no control over what another person injests into her body. Coaxing and cajoling usually only does one of two things: creates a power struggle between Sarah and I, or leaves us both feeling frustrated and angry. Still, I have this tape in my head that plays and says, "You are Christy: CF-Mom Extraordinairre. You should be able to fix this."

So, entering the cafeteria that day, my emotional, mental and spiritual state was probably not what it usually is. That is precisely when I encountered the woman hereafter referred to as "The Roll Lady". She was wearing a lab coat and a badge indicating she was an associate professor for USA. I noted that she was probably some type of doctor. We waddled through the line side by side getting our food. I ordered chicken parmesan and turnip greens. She ordered the vegetable plate, which is advertised to be three vegetables and a roll. We were shuffling through without incident until she reached the roll display. The only bread available was corn bread. She asked the gentleman at the roll station if they had any more rolls. He indicated that they did not. In the mean while, I moved over to get my unsweet tea, while The Roll Lady began impuning the gentleman's family heritage because there were no longer any rolls available. Somehow, she made it to the check-out line right before me, so I was again stuck.
I'm not sure why people look at me and think, "I need to talk to this person," but she seemed to assume that I would be a sympathetic ear to her cause.

"Can you believe they don't have any rolls? They aren't even that good. All they have is cornbread. It is a mix and they add sugar. I'm not eating that."

I gripped my styrofoam tray and gave a non-committed type of "Humph".

"I mean, if they are going to advertise a vegetable tray with a bread they should have a roll. There isn't even one DAMN roll to be had!"

This is probably the point that I looked at her badge and noted her associate professor status. I remained silent this time and shifted my eyes awkwardly around hoping she would be quiet given my lack of response to her delimma.

Instead, she turned to the gentleman in front of her, "I'll bet I have to pay the same price even though I don't get a roll."

The gentleman paid for his lunch, tucked his head down, and scurried away from The Roll Lady. Unfortunately, now there was no one between her and the cashier so she really let loose. She opened her styrofoam container to show the cashier what she had gotten. The cashier said,

"One vegetable plate."

The Roll Lady boomed, "Why should I have to pay the entire cost of a vegetable plate when there aren't any DAMN rolls?"

The nervous little cashier lady called to a passing cafeteria helper, "Do we have anymore rolls? Can we get this lady a roll?" The boy rushed away without answering, just shaking his head.

The Roll Lady returned her gaze to me and said loudly, "I mean, if they are going to offer a service, they ought to be able to provide it! All I want is a DAMN roll! That isn't too much to ask."

The cafeteria was jammed with people and every eye was staring at The Roll Lady. She paid $2.06 for her meal, (Yes, a whopping $2.06- That's correct.) and stepped to the other side of the line to continue ranting while I paid. I watched as the little cashier pleaded for someone to get the crazy Roll Lady a roll. And, briefly, I thought about putting her in her place.

"Listen here, Roll Lady!" (I had already named her that in my head.) "It is certainly not anyone's fault that they ran out of rolls. The cashier has nothing to do with the preparing of the food, so cursing at her isn't going to help one iota. Further, your badge says, 'Associate Professor'. Are you meaning to tell me that you have a Doctorate Degree and you are acting like this in public? Not only public, but in a hospital where there are sick children? Right now, I am here with my daughter, who is receiving I.V. antibiotics for the 3rd time in four months, and I don't intend to listen to your crazy, abusive self ranting about a lack of rolls. Shame on you! Apologize to everyone in this cafeteria and be gone!"

SIGH. I thought about saying it. I kind of wish I had said it. But, I didn't. I stood there quietly and scurried quickly away from the crazy, ranting Roll Lady and the whole scene.

When I returned to the room, I relayed the Roll Lady story to Sarah. I also looked on USA's website to see if there was a picture of her somewhere. I fully intended to out her on my blog. Alas, her picture was nowhere to be found, and I didn't note the name on her tag. Thus, The Roll Lady shall remain anonymous. But, maybe, just maybe this little blog will make someone think long and hard before becoming a Roll Lady themselves.

Namaste'.

The Eagle Has Landed!

2007-11-21T06:36:00.000-08:00

So, we just got the coolest new CF thing ever, and the girls aren't here to enjoy it! It is called an e-Flow. It looks like a little UFO, and it is designed to nebulize medications at a much faster rate. Dave and I played with it last night.

Not to worry... We put regular water in the e-Flow, since neither of us actually has CF and don't need any medicine. However, I have to say that I have a new respect for Dan and Sarah since inhaling nebulized water made me burst into such a coughing fit. Still, we couldn't resist and just had to try it out.

It runs off regular double A batteries. (It also has an AC adapter.) Excitingly, it is small and portable and quick, quick, quick! For those who aren't aware, people with Cystic Fibrosis spend a great deal of time taking breathing treatments and doing chest physiotherapy, just to be able to breathe. The other benefit is that it is almost entirely silent. Yes, that's right! SILENT! When the girls are doing treatments, my eardrums are usually ringing with the blaring of the television over the nebulizer and the vest.

The girls also got a new Smart Vest system last week. It is much smaller and easier to transport than their old system. We are working on getting a smaller 2nd vest, as well. Somehow, the insurance companies have never realized that the girls are not Siamese twins. We have always only had one vest machine, making it impossible for the girls to travel separately. Don't get me wrong, we have muddled through band trips and Italy vacations with the Acapella, but it doesn't work nearly as well for the girls.

Anyway, I'm completely thankful for all the wonderful new technology that has become available for my children. And, I absolutley love the idea of breathing through a little UFO. Beam them up, Scotty!

Magic of Community

2007-11-18T06:50:00.000-08:00

This week at school, we read Magic Tree house #27: Thanksgiving on Thursday, by Mary Pope Osborne. The Magic Tree house Series is a wonderful series for children written in the historical fiction genre. In this series, Jack and Annie travel to places of significant historical events and join in the adventure. In Thanksgiving on Thursday, they experienced the first harvest feast with Governor Bradford, Priscilla and Squanto. The book informs children about what it must have been like in Pilgrim times in a fun and imaginative way.

However, Mary Pope Osborne also integrates a character lesson into each of these stories. This is something that I really love about the books. And, it is something that we have moved away from in education: character education. School is as much about helping children to learn how to behave appropriately, while building personal character, as it is about helping them to learn to read, write and calculate math. Some parents would disagree with me, and that is O.K. The parents who disagree are the parents who are doing their job. Sadly, it appears that parents who are spending time on character-building at home are sorely in the minority.

In Thanksgiving on Thursday, Jack and Annie are charged with the mission of finding the magic of community. They learn about the hardships the Pilgrims had to endure, helped prepare traditional foods for dinner, and attend the first Thanksgiving Feast. At the end of the story, Squanto offers the message that the children should learn to "Always be kind to those who feel different and afraid." I'm so hopeful that my students really got the importance of that message.

Being kind to those who feel different and afraid has come relatively easy to me. As a young child, my life was full of feeling different and afraid. Only through developing a spiritual life beginning in my late teens and early twenties did I begin to feel a part of the community of humanity. I started to understand that at some level, everyone feels different and afraid. Maybe alcoholism, drug addiction or poverty is a factor that makes a person feel separate. Maybe a person's sexual orientation, religious preference or intellectual abilities make a person feel different. Sometimes a person's physical appearance, race or health condition might cause a feeling of isolation. Whatever the issue, people seem to run from craving uniqueness to wanting to fit and blend as a part of a whole.

Thanksgiving is indeed upon us, and I am reminded that gratitude is a simple spiritual principle that can change my attitude in a matter of minutes. Making a list of all the things for which I am grateful for in life can make the biggest problems seem minute. Usually, once a week, I make a mental list of all the things I hold in thanksgiving, but I wish I could remember to use the principal whenever I start to feel "different and afraid". Making a gratitude list helps me to remember that I am not really so different after all. I imagine that the things I hold in gratitude are the things that most people hold in gratitude. Becoming aware that the child with horrible behavior in the morning might not have had breakfast, brings me to a place of compassion... Realizing that the teacher obsessed with physical appearances actually has deep-seated insecurity, helps me to be kinder and more patient... Understanding that the irate, irrational parent feels completely powerless and fearful, instills a sense of empathy. Being able to look at people remembering the commonalities, rather than focusing on the differences is something I want, and even a gift that graces me on occasion.

Happy Thanksgiving, everybody. ~Namaste'~

Victoria's Secret is Nothing Compared to Mine

2007-09-03T05:40:00.000-07:00

I have arrived at a new and exciting milestone in my life... This sensational event marks the passage of much time... The healing of old wounds... The anticipation of a new and glorious era... What, you ask, is this grand event?! The time has come for a mass purchase of new underwear and a purging of the old.

One might wonder why exactly this is a bloggable moment. I mean, it's not about state testing, or the war in Iraq or the girls' struggle with that friendly monster called CF... But, nonetheless, it's important to me.

First off, let me assure you that this purchase is fashionably and practically necessary. My favorites are exhibiting signs that life is indeed coming to a quick and speedy end. There are holes, stretched elastic and threads dangling everywhere. It is somewhat of a disgrace.

Perhaps I should begin by telling you about the last time a massive underwear purchase took place in my life. It was actually over ten years ago. Randy and I were divorcing, I had met Dave, and was planning a trip to Italy to visit him. So, I decided that I didn't want to be in possession of any underwear that Randy previously viewed. I felt I needed a clean slate with regard to who had seen my undergarments. I know it's a little crazy... And, I only share it now because enough time has passed to put a little distance between me and the nuttiness of that period in my life. Further, I no longer have this hang-up, and harbor no feelings of ill will towards my ex. Thus, I cordially invite him to rummage through the laundry at will when he visits. He can look at any underwear I possess....

I should also clarify that all of my underwear is NOT ten years old. (I'm sure Billy would give me a bunch of crap about that for a really long time.) I have purchased new panties and bras over the course of ten years as the need has arisen. But, I have hung onto those underwear purchased during the "going to Italy in new underwear that no one has ever seen" purge. They have become my favorites. They are like comfortable old friends. I can rely on them to do the job, support me when needed, and even tell me that I look great when I have gained a few pounds.

The Italy panties further remind me of the most magical, romantic time in my life. I looked up at Michelangelo's masterpiece in the Sistine Chapel wearing those very underwear! I roamed the streets of Florence, eating Gelato wearing a lovely pair of Victoria Secret's finest collection. I climbed Mt. Vesuvius wearing a pair of those very special underlings. Thus, I find myself feeling nostalgic and sad. If I let go of the underwear, does this somehow mean that the magic of Italy has somehow passed for me too?

You see, each morning when selecting which pair of underwear I should wear, I go through a mental process. I think about the pants I'm wearing and try to select underwear that aren't going to show a terrible panty line. However, there are some mornings (sorry Stacy and Clinton) that I select the Italy panties simply because I need a little Italy in my day. All day, my Italy experience is just beneath the surface because I am wearing the panties.

The panties further represent the feeling of freedom and perseverance that took over during the process of ending a relationship and beginning a new one. Somehow, I knew that life would go on because I purchased new underwear. I knew that life would be new and different and better for everyone because no one had ever seen those new underwear before... It was more about letting go of the past and embracing a new, promising future.

Dave and I have been married for nine years now, and the panties are over ten years old. I realize the time has come to let them go. I sat down with Dave on Sunday to break the sad news. He, afterall, knows all about my mental underwear life, and I didn't want him to think I was leaving him. He just kind of nodded in his way, humoring me...

So today, on Labor Day, nonetheless, I will begin my quest for new panties. Keep me in your thoughts and prayers. Know that it will be a day of mixed emotions for me. Still, I am willing to forge through with the hope of finding a bright new tomorrow in underwear that can lead me proudly into the future!

Testing, Testing Everywhere and Not a Word to Think

2007-08-26T06:12:00.000-07:00

I just returned from the MS State Department's MCT2 Data Review Committee in Jackson yesterday. My job, along with about 300 other people, was to review results, and incidentally test items, from each of the questions piloted in the assessment given to the students of Mississippi last May. Recently, the news has had a field day presenting evidence that Mississippi's State Curriculum Test is far too easy and doesn't align with test results from National tests. It was absolutely fascinating... And, I'm not just being my usual sarcastic self. I really enjoyed the experience and met a bunch of wonderful people along the way. Of course, the trip provided many bloggable moments, so I hope to share those with you! Bear in mind, I am bound by a confidentiality agreement, but honestly, the test wasn't the most interesting thing to share anyway. You know I am all about an experience!

I arrived at the Downtown Marriot Wednesday night after driving for three hours. Map Quest ensured my safe arrival, however, and I was delighted to find Bath and Body Works products in the room. Having received no agenda prior to arrival, I wandered around downstairs until I ran into one of the facilitators who told me to be downstairs at about 7:45 for a lovely continental breakfast. I returned to my room for a fretful night's slumber, as I am sincerely not accustomed to sleeping away from my husband.

The next morning, upon checking in with registration and figuring out that I would be serving on the 5th grade Language Arts committee, I ran into Lucy, another teacher from my district. We were indeed treated to a delicious continental breakfast of fresh fruit, bagels, croissants and little pats of real butter. After everyone had eaten and settled into the main ballroom, the Director of Curriculum for our state and a data analysis expert from the Pearson testing company gave a brief Power Point presentation. Well, actually, it wasn't really brief, but I just think it serves me better to say it was really brief since I really didn't understand much of what the data analysis expert said at all. I sat there listening to terms like "item response theory" and "point bi-serial", looking around hoping Dave would materialize from somewhere and tell me what in the heck the woman was talking about. My husband has a degree in statistics from the Naval Academy, not me.

Thus, I was feeling particularly forlorn and out of place until Lucy leaned over and said, "I feel like I'm listening to Charlie Brown's teacher... WawawawaWAH!"

The relief I felt after Lucy's admission that she didn't understand a word the woman was saying was short-lived, however... After breaking into our groups, it became apparent that we were going to have to use the data to review the items. My Gawd! The State Department of Education is serious about this depth of knowledge stuff! They were expecting me to take an hour long presentation about incredibly difficult mathematics concepts, synthesize the information and apply it to my review of individual test items! Briefly, I felt like one of my kids... Maybe I should pretend to be sick so nobody will guess that I don't have a clue what any of this is about.

But, fear not... My arrogance and innate ability to exude confidence, when I really have no idea what I'm doing, took right over allowing me to sit in a room with about twenty-five other ladies, giving my opinion about test items as they were presented. I sat between teachers from Madison County School District and Greenwood School District, forging fast friendships. Now, you can't get a large group of women together without claws coming out. Further, it appeared that the administrators who chose teachers for the committees made it a point to choose the most out-spoken, child-advocating types they could find. Thus, it made for a really interesting group.

Robin, my new friend from Madison, noticed that one woman in particular looked as if she was going to have a spontaneously created rain crowd erupt over her head. I always wonder about people like that... What happened in her life to make her so angry and morose? My feelings of sympathy quickly dissipated when she tattled to the facilitator because we were laughing and having a good time and she couldn't concentrate on reading. I try to laugh and have a good time wherever I go. And, honestly, at that point we had delved heavily into the various test items. Two choices presented: laugh hysterically or cry. Given that our 30ish to 50ish-year-old selves were spending copious amounts of time debating answers and items, imagine what the 10 and 11-year-olds were going to do when presented with the new test. I promise not to punish any student if he/she suddenly bursts into fits of tears or hysterical laughter. We'll just all have to pause and allow a little time to get it back together.

Our Pearson facilitator, Marnie, was from Ontario. She worked hard to keep us on track. She also insisted that we have a data reason for eliminating items. So, "this is terrible and we hate it" wasn't a good enough reason... (Sorry to my friends who were counting on that...) We had to make one of three choices about each item: accept, reject or revise. The choices had to be based upon our analyzing the data. So, I brought out my notes from the presentation and attempted to decode the mean, B-par, r-tots, and point bi-serials. The data was further divided into item results for the top 1/3, the median 1/3 and the bottom 1/3 performing students. Thus, I found myself looking primarily at three points of data: B-par score (ease or difficulty level of the question), and the results for the median and bottom performing students. If the overall data indicated a problem with the item, we looked at the item, how it was worded, what it measured, and how it compared to what was expected within the new MS curriculum framework. Further, I focused on how the "least of our brothers" performed to see if there might be a problem directly related to a disability that may have caused them to miss the question. It was quite a process.

On the second day, the Director of Assessment gave a strange speech after lunch. Educational administration is famous for these types of speeches... Evidently, there were issues within a couple of the review groups. Rather than discussing these issues with the people to whom they applied, she addressed the entire group. Therefore, there were approximately 250 of us who had no clue what she was talking about. When I inquired to my professional teaching counterparts as to what the speech was about, I received several summaries of the speech. Several of us thought she was saying that our input would be considered, however, the state has already spent hundreds of thousands of dollars on this assessment and some items would be used despite our negative evaluation of the items. Others thought she was talking about test alignment to new curriculum frameworks and how it would take several years to develop a truly accurate measure of this new framework. One teacher thought the Director of Assessment (a lady) was publicly proclaiming her undying, everlasting love for the Direct of Curriculum (a man). Probably, the speech was a slight combination of all of these items... Except the everlasting, undying love part. That just gave us all a good chuckle.

On the final day, I spoke to Marnie, the facilitator and she gave me insight into how tests are developed with teams of people focusing specifically on how to make it most accessible to people with disabilities. I heard what she was saying, and truly appreciate the effort; however, I really wish she could meet sweet little "Jo", my student with cerebral palsy. No matter how many people have reviewed it, this 5th grade test will not be friendly to my student. It was interesting to learn that Canada takes a more common sense approach to testing than is outlined in the No Child Left Behind act... Their law requires 70% of students reach a level of proficiency, versus the requirement of 100% by 2014 as stated in NCLB. Further, students with reading disabilities are allowed to use a Kurzweil reader on the reading test. This would absolutely not be allowed on state assessments in the U.S. But, it gave me hope that perhaps someone in America will come to their senses in the near future!

My adventure ended by missing my exit at Hattiesburg and driving 40 miles out of the way on Highway 59. I stopped in McNiell, MS when my bladder was about burst. Thankfully, I was talking to my friend on the cell phone, so I could give specific directions about my location. I was concerned it was going to be a Bates Motel experience, and he would need to come rescue me from banjo-playing backwoods inbreds. Fortunately, McNiell turned out to be a nice little stop with a lady who could direct me to I-10 via Slidell, LA. At least I was finally able to find my way home. My MCT2 Data Review Committee experience was definitely worthwhile. I gained great insight into how assessments are developed. But, I can't really say that it will change the things I'm doing with my students. I'm not sure this test will help prepare my students for life. Still, I think I'm a little better prepared for the teaching profession. I have added some new terminology to my vocabulary and enhanced my ability to dazzle others with my uncanny ability to present a front of absolute confidence in the face of incredibly unrealistic requirements.

~Namaste'~

Child Life Specialist

2007-08-12T05:27:00.000-07:00

Anna Cat
Amy Brown is her Child Life Specialist.

Sarah started running a fever on Wednesday. I took her to Dr. Sindel, she was hospitalized on Thursday overnight, and discharged on Friday. Currently, we are doing I.V. at home... Fortaz and Azactam for those who are interested in that kind of thing. She is still running a fever off and on, so we are playing it by ear with regard to when she will return to school.

That's right! School started back this past Monday. It has been really hairy-carey trying to do everything necessary to get the school year started off on the right foot, and then having to regroup with Sar. I know for sure, though, that there is never a good time. I have not once, in the fifteen years I have been dealing with cystic fibrosis clapped my hands together and jumped up and down exclaiming, "Oh goody! Let's get going to the hospital!"

Still, focusing on being grateful that medications are available to help my kids helps put me in a better frame of mind. Somehow the mind usually wants to look at what's wrong before I am able to shake it and shift the focus to what's right. Whether I like it or not, it is always about my perspective on things. Learning to be grateful in the midst of calamity brings much more peace of mind than becoming mired in the turmoil of all the challenges CF brings.

Sarah isn't feeling her best right now, which makes her a WEE BIT CRANKY. This makes it more and more difficult for me to maintain my supportive, spiritual, CF-Mom Extraordinairre persona. It's hard to lovingly comfort someone who is snapping your head off every time you ask something. Thus, my primary focus has been not to beat the child with the life threatening illness. So far, we're all hanging in there.

During this last, brief hospital stay, I met a new lady recently hired who introduced herself as a "Child Life Specialist". My ears perked up... "What was that title?" She explained that her job is to assist the children who are hospitalized in whatever way they need assistance. So, if they need extra help with school work, through Class Act (the hospital school), she does that... If the children need comforting during a procedure, she does that... Whatever children need to help improve the quality of their overall life experience in the hospital is what she does. This is what I do at work... Anything to try to improve a child's life experience in school. I love the title. I'm thinking of adopting it for myself.

I give myself new titles all the time.... Mainly because special education is full of acronyms that no one understands anyway. I am the LSC for my school. What's that stand for, you ask? "Local Survey Chairman"... What in the heck is that? Exactly. To parents I say, "I am the special education coordinator for our school." But, to people I work with it means something else entirely... "AAAKKK! I have a form to fill out and I don't have a clue..." Ask Christy. "AAAAKKK!!! This parent is a pain in my elbow. She is threatening to sue us..." Call Christy. "AAAKKK! There is a kid throwing a whopper of a fit in the hallway." Get Christy. (Although, I'm not complaining. I rather like the excitement of conquering those types of challenging situations...) I just don't like the stress of trying to do all of that and teach.

But, I like the idea of "Child Life Specialist"... It is so descriptive, and it works to describe my job at school and my job as CF-Mom Extraordinairre. My job is to do whatever is necessary to improve the quality of life for children... Whether they are my own children or someone else's. One of the ladies on our SpEd team even coined a phrase that people use throughout the building... Occasionally, a child will need an attitude adjustment, and I happily provide that for them. My friend, Debra, when asked what happened to bring about the change says, "Oh, Christy 'Maxwelled' him." I suppose that goes right along with the all-encompassing title of "Child Life Specialist"... As does, doing the laundry, making dinner, running to band parent meetings, praying with my kids, shuttling my child to gymnastics and dance, and reminding Sarah that it is within my very special power to remove every priviledge she ever thought about having if she talks to me in that tone one more time... "Child Life Specialist".

Random Information

2007-07-29T05:42:00.000-07:00

My online blogging friend, and author of In the Mind of a Dyslexic, DJ, tagged me.

First, these are the rules:
1. Each player starts with eight random facts or habits about him or herself.
2. People who are tagged need to write their own blog about their eight things and post these rules.
3. At the beginning of your blog, mention the person who tagged you. At the end of your post, choose eight people to tag, listing their names.
4. Don’t forget to leave them a comment telling them they’re tagged, and to read your blog.

Eight Random Bits of Information You May or May Not Know About Me:

1. I hate balloons. I believe they are just trash waiting to happen. They just kind of hang around until all the helium leaks out, and then you are left with this bit of trash that somehow you feel mildly obligated to allow to continue hovering mid-way because someone gave it to you out of good wishes. If I am ill, don't send balloons. I view it as if you have emptied a wastebasket into my living area. (Along these same lines, I believe Easter grass is a thing of the Devil.)

2. When I was a kid, I lived on the same street that I currently live on. There is a fish camp at the end of the dog leg road that shoots off our street, but has the same name. My brother and I used to ride our bikes down there and tell stories about how it was haunted. We scared the willies out of each other and rode back home as quickly as we could each time we ventured down there.

3. When I lived in Virginia in my early 20's, I truly did live in a haunted house. The ghost wasn't scary at all. She was rather grandmotherly. She would always open the refrigerator door and leave it open. It seemed that she stayed primarily in the kitchen and dining room. When Danielle was about 2 years old, she was playing in the dining room. I heard her talking to someone, so I walked out of the bedroom and asked, "Dan-Dan, who are you talking to?"
"Mama, I'm talking to the lady," she replied.
"What lady?"
She looked around and said, "Oh, I she's gone, but she was just right here."
Maybe I'll write a whole blog about my haunted house experiences.

4. We finally found someone to finish our stairs! They start Monday. This is the last major post-Katrina rebuilding that we have before completion.

5. My husband wakes me up each morning by bringing me coffee and giving me a back rub. I highly recommend this service to all my friends.

6. I like to draw, paint and do other artsy projects.

7. My natural hair color is mousy brown with gray streaks. I dye it red. Until I had Danielle, it was blond. I guess I gave Dan and Sarah all my blond hair because after they were born it kept getting darker and darker.

8. I really want to grow plants and garden, but I can't seem to care for them enough to make them live. Dave believes I am Dr. Death when it comes to plants.

Minding My Own Business

2007-07-27T17:32:00.000-07:00

This seems to be the theme of my life these days. I'm getting lots of lessons in the prodigiousness of keeping my mouth shut and my opinions to myself. The problem is... I'm terrible at it. Verbal diarrhea seems to be an illness I have acquired somewhere along the way.

Last week, I was presented with an occasion to overhear a conversation. This conversation had no impact on my life in any way shape or form; however, it had the potential to affect the life of my friend. Thus, I repeated the conversation in an attempt to make my friend's life easier. Right away, events began going awry. And, I ended up kicking myself for saying anything in the first place. "Why couldn't I have just minded my own business?" rushed my consciousness.

So, now, I'm practicing... Practicing minding my own business... It's really hard to do. And, much to my dismay, I have started to realize how ingrained a belief I have that a little bit of everything is my business. Further, I have begun to realize how most people probably don't give a rat's rear end about my opinions. I have tons of those too.

The bottom line is that I need to live in the belief that I trust the Process... Beyond that, I need to also trust that your Process is right for you. It may not be right for me. I may think you are "going to hell in a handbasket" (metaphorically speaking, of course). But, if I believe that God is all good and active in everything, everywhere, then I have to believe that God is active with or without my commentary.

St. Thomas... Welcome to Fantasy Island

2007-06-17T05:49:00.001-07:00

We have been back from St. Thomas for a couple of weeks now. I have been teaching Yoga for Summer Scholars for the past week. At any rate, the reality of St. Thomas wasn't too far off from the vision I shared before the trip. Maybe there is something to this principle of: "We are co-creaters with the Universe" afterall!

I drove to New Orleans so I wouldn't get motion sickness in the car. We arrived, checked into a hotel and had a fabulous dinner at an Italian restaurant. I ordered tea and was presented with a blackberry-sage blend from the Republic of Tea. All I can say is that was the best tea I have ever had... Yum... Yum... Lip-smackin' good.

Our flight left early, so we got up at 4:30 so the girls could do their treatments. We arrived at the airport with minimal hassle going through security. Although, the security guard did raise an eyebrow looking through the dufflebag of medication. We had a cooler with Pulmozyme, TOBI and a little container of 7% Hypertonic Saline. The pills were in a gallon-sized ziplock bag. Another ziplock bag contained all of the nebulizer essentials. I just stood there like it was the most natural thing in the world for a family of four to be carrying a complete drugstore in a duffle bag, so they let us through. Dan, however, had to relinquish her highly dangerous hairspray and straightening creme she had stashed in her purse. This set her into a little bit of a cranky tailspin. As an aside, I would think it a greater security risk to take a teenaged girl's hair care products than to let them through. She was at risk for a serious emotional meltdown for the remainder of the trip. The loss of hair product threw her into an immediate funk. This funk worsened as the withdrawal effects of no cell phone or computer set in. Her mood spiraled downward into a little bit of what Southerners like to call a "hissy fit".

We did, indeed, arrive in St. Thomas after a lovely, noneventful flight. The landing was really incredible. The plane just kept getting lower and lower over the water with no land in sight. Then, all of sudden, the plane touched down and we were on the ground. As soon as we disembarked, people in the terminal were offering samples of rum. Given that we don't drink alcohol, we didn't partake; however, I found it amusing that it would be possible to land in this tropical paradise and enter immediately into an alcoholic haze remembering nothing of the entire experience...

We retrieved our bags and found our taxi through Tropic Tours. The motion sickness I avoided on the way to New Orleans found me on the ride from the airport to Wyndam Sugar Bay. It was a wild ride on the left side of the road over and around hills and valleys. On a couple of occasions, Sarah was convinced we were going to meet an early end by careening off a cliff. However, our taxi driver transported us safe and sound to the front door of the hotel. I was a light shade of green. Our taxi driver humored me by posing for this photo. Alas, he looked nothing like my vision.

We arrived at the hotel with about fifty other people. Dave waited in line and got us checked in while the girls and I scouted out the hotel lobby and the gift shop.

Our room looked exactly like the one in the picture I posted previously. For some reason, there was the unfortunate aura of urine in the air as we rounded the corridor to our room. I can't say for sure, but it may have had something to do with the wide availability of rum... At any rate, we arrived in our balmy warm room and I dragged Dave out to the balcony to take this "loving embrace" photo.
We immediately headed for the pool, where we watched a couple get married. There was a wedding every day. There were three pools with waterfalls. The pools led down to the beach.

It was reasonable not to leave the resort at all. We spent nearly every day lounging by the pool. Nonalcoholic smoothies were available from the Turtle Rock Bar. There was a grill available poolside for lunch each day.

Behind the waterfall was a little cave area... In this area there was Foosball, ping pong and a pool table. The girls both learned to shoot pool. Dan became quite the shark by the end of the week.

We went snorkeling one day. The girls reluctantly agreed to this adventure. They must have developed their Mimi's aversion to sharing space with God's oceanic creatures. However, once they got the hang of it, they really enjoyed it. I loved seeing the fish and all the underwater sea life. I even got to see a sea urchin up close. It reminded me of the time in college when I prepared sea urchin to serve my classmates for a science class.

The beach was lovely. I could see why so many people want to get married there.

Note Sarah's braids. It took nearly two and a half hours to get her hair braided. She looked fabulous. Eat your heart out Bo Derek!

We went on a tour of the island and shopped in downtown St. Thomas. The tour was nice, but a little long. We rode around in an open air taxi. Thank goodness for this! It prevented copious amounts of motion sickness from ensuing. During the tour, our guide acted as part tour guide, part real estate agent. He let us know all the properties that were available. Since most of those seemed out of our price range, we just stuck with the souvenier shops.

The donkey's name was Monica Lewinsky. She's a democrat.

Imagine my surprise running into Kenny Chesney! Yes, I've heard the rumors. Kenny and I rise above such idol gossip. Our relationship is no one else's business...

On the tour, we also visited a place called "The Great House". It is a botanical gardens and place to host events on the island. Dan was overjoyed to find a cat living at The Great House! The bird never would talk to me even though I stood there for quite a while talking to him. Maybe he knew that I secretly abhor birds.

We also purchased our toe rings. Dan jumped on our bandwagon and bought one too. They don't match, but each reflects a little of our personalities. (Sarah's is shaped like a crown.)We played mini golf. Dave and I tied for first. He can never just let me win anything! We also each had a massage. It was both girls' first time. They are both hooked. I kind of thought they might be ticklish, but no... They enjoyed the experience thoroughly. That same day, Dave and I also attended an evening yoga class while the girls satisfied their computer craving in the hotel lobby.

We spent time in the hot tub, as well... Iguanas usually surrounded the hot tub. I don't know if they liked the warm, moist air or if some other reason drew them to the area. But, the iguanas were really neat. They would walk all around the hot tub and pool area. One of them came close to me and licked my toe. They were a little like scaly, green dogs.

Ducks also wandered around the property.

On the last night there, we stayed poolside for a show. Madame Voodoo was a fire eater and glass walker. We had great fun oohing and ahhing. Dave even got to dance with Madame Voodoo along with about 10 other unfortunate gentlemen who were pulled from the audience.
The trip was so great! The worst part was getting stuck in the Miami airport for about 8 hours on the way home. We didn't get back into New Orleans until after 2 in the morning. We arrived home at about 4:00. Still, it was entirely worth it. We are definitely planning on doing another trip to the Carribean.

Monitoring MySpace

2007-05-27T05:40:00.000-07:00

Technology has created many new and varied challenges for parents. Not only do I have to be aware of where my children are, who they're with and what they are doing... Now I have to know who they're texting, IMing, and e-mailing... I have to know what their MySpace layouts look like, what songs and videos are posted, who is on their friends list, and what comments are being posted. I guess I can't really cast aspersions since I have become a blogger in this ripe, new and different age of technology. But, gosh, it is making my life harder and more interesting.

Honestly, I didn't want to monitor it. You see, I TRUST my children. They are relatively good kids. And, I had the belief that giving them a firm foundation with a solid spiritual upbringing would prevent any weird shenanigans from occurring. Then entered Mr. X with tales (and a printed account) of my lovely, innocent Sarah trashing his daughter on MySpace. Yikes. This was not a good moment in the life of Sarah. She lost computer for months as a result of that episode.

Hence, the MySpace monitoring... Now, my husband and I both have MySpace accounts. Christy's MySpace can be accessed here. Being teachers, we have a lot of students past and present who have added us to their list of friends. This has inadvertently given me full access to a whole host of information that I'm not sure I wanted to know in the first place. It is an education and eye-opener with regard to the sub-culture of teens. They are cussing. They are quarreling. They are posting funny jokes and videos. They are proclaiming their undying, everlasting love for one another. They are chain-mailing. They are threatening to fight one another. They are writing poetry. They are posting art. They are posting tons of photographs of themselves and each other. They are thinking about suicide. They are having sex and writing about it. They are talking about church and querying about God and the meaning of life. They are doing drugs and drinking. It's all there.

I have friends and colleagues who believe MySpace is going to be the downfall of man. But, perhaps it is offering a creative outlet for kids to just be themselves... I would further offer that the "themselves" changes from moment to moment. Because I can guarantee that while Sarah might think and ugly thought about someone, and might even say an ugly thought about someone, she will not post an ugly thought about someone. After the Mr. X in the living room incident, we were even able to have a discussion about the law of attraction. "Be careful about the words and the energy you are putting out into the Universe because it will come back to you a hundred-fold."

Dave has had an opportunity to speak to a student who posted a poem about suicide. Was the student really contemplating taking his own life? I don't really know. But, he found out that an adult in his life cared about him.

Kids are seeking guidance. I used to think they were seeking parental guidance... That deep-down in their sub-conscious minds they truly wanted some adult authority figure to offer boundaries. Now, I know they are just seeking guidance in trying to figure out who they are. Unfortunately, they will take that guidance wherever and however they can get it. So, it's about me as a parent making a decision. What type of guidance do I want provided for children? Do I want the free-for-all that is available on the Internet? Or, do I at least want to be able to say, "Yes, that's there, but have you considered this?" I've learned that kids will listen if they know that an adult cares.
If you have kids, I would invite you to join the MySpace revolution. Call me if you need help "pimping your page."

~Namaste'~

Cadet Ball

2007-05-19T06:20:00.000-07:00

Last night was one of those, "Oh my gosh! This is an honest-to-goodness lifetime moment." Dan was in a beautiful dress, and a tall handsome boy showed up in my diningroom with a corsage. They were going to the Cadet ball. Enjoy the photos!

Spring Break

2007-04-06T06:35:00.000-07:00

I just thought I would post a few photos from our Spring Break doings and goings. We have had a relaxing time staying around here. On Tuesday, we went to the Pompeii exhibit at the Explorium in Mobile. Yesterday, we went to the New Orleans Zoo. We really wanted to go to the beach, but the temperature tanked on us, so the zoo seemed a more reasonable option. At any rate, we have had a wonderful time!

I also got a brand new, cute little red VW Jetta this week. I'll have to post photos of it too. I hope this post finds each of you with more love than you know what to do with today!

And on that Farm He Had a Cow...

2007-03-31T05:47:00.000-07:00

So, Spring Break is upon us! I have been lounging in bed, reading blogs, thinking that I really need to get up and do a yoga practice... And, yet, here I am posting instead. I check quite a few teacher blogs, and everyone seems to be talking about this "time of the year". The end of the year is very stressful for all teachers, regardless of level or subject. A frantic feeling comes along... "Oh no! The end of the year is quickly upon us and I still have so much to do. We have come so far, but still have so far to go!" For special education teachers, we have that feeling, along with the stress of the wondrous duties involving the creation of the plethora of paperwork that must follow each and every student, insuring the provisions under IDEIA and NCLB are met. We must determine whether or not students qualify for ESY. We must create new IEPs, update IBPs, taking into account FERPA, LRE and FAPE. Now, you can't do any of this without having a WPN. I am the LSC at my school, so I coordinate the efforts of everyone in my department. In my district, we do all of this using a program called SEAS. ...It makes me want to sing: E-I-E-I-O!

Yesterday, I met with the parent of a student who transferred to our school from another school. This parent was IRATE when she received her child's report card for third nine weeks. The report card listed my name as her teacher for Special Ed. Reading, Special Ed. Language and Special Ed. Math. The words, "Special Ed." sent her into a frenzy. Perhaps the fact that she had straight 'C's in all of those subjects created a feeling of ill will, as well. She claimed that she had not been informed that her child had been placed in special education at her previous location. She wanted her removed immediately. I presented her with copies of all information, including documentation of where she signed for permission for this placement. I further explained her rights under all of the current laws mandating special education in the best manner I could. I gave her the thick packet called "Procedural Safeguards" that is written in archaic legal language. But, honestly, I felt inept at times. I explained the pros and cons to the best of my ability, but I understand more fully than ever before that the process is so complicated... The ramifications of labeling or not labeling are so convoluted that I can't even keep up. So, how are we to expect parents, with a limited understanding of the process, to keep up? I try, to the best of my ability, to put it into plain language for them. However, I can see how a parent would sign a form without fully understanding exactly what is being signed.

The parent made the decision to remove the child from special education. Hey! No skin off my nose! (We are currently doing a lesson on figurative language.) The child is actually a "pot-stirrer" and my class has been in an uproar ever since she arrived. At the same time, I think I was beginning to see some real change in her behavior. She was beginning to be accountable for her actions. She was also beginning to take responsibility for her own learning. I think I could have made some real progress. Interestingly, the decision was made for her to remain in a class currently slotted for inclusion. This means that extra personnel are present to help students with special needs. My inclusion personnel also help the other children, as well. So, essentially, she will still be in an environment to receive more help than she might otherwise be afforded.

I fully support that parent's right to remove her child from special education services. She is still eligible to receive the services for the next three years, if the parent should change her mind. However, I'm left wondering when it all got so complicated... Special education law fascinates me... Maybe I will blog about that some day: A History of Special Ed. according to Christy... In the meantime, I'm wondering if I can't find another title to hang around my neck. "Special Education Teacher" seems to send some people screaming into the wilderness. Hmm... Let me think about my week: "Letter Writer for SSI Applications"(Parent awaiting my arrival at 7:10 a.m. to help fill out paperwork for a Social Security disability application)... "Parade Master" at car duty... "Math Genius" (Can we find the average of five grade? Yes, we can!)... "Computer Technician" (Gradebook and SEAS)... "Baby Sitter"(Watched 5 kindergarten students and implemented impromptu sight word recognition lesson while the other classroom teacher handled child falling out in grand mal seizure.) "Shopkeeper and Bookkeeper" (Via the fabulous checkbook classroom token economy system I implement.)... "Counselor and Warden" (Aided in the removal of a general education student who made a physical threat against a teacher.) "Medical Aide and Consultant" (Eat lunch with a student afflicted with CP, whose vocal cords have recently become paralyzed... Lunch is my only planning break during the day.) "Reading Specialist" (Phonics decoding with dyslexic students)... And, of course, "Legal Consultant" (Explaining SpEd Law to parents and signing paperwork). If you will notice, most of what I do seems to have little to do with teaching, at times.

Still, given all the headache, I can't think of anything I would rather do with my life at this juncture. Dave, my husband who is not a blogger, but is a wonderful high school mathematics teacher, interviewed this week for an assistant principal job at the high school. If he gets it, great! The hike in pay would be terrific for us. If he doesn't get it, that's O.K. too. He loves teaching and coaching. The thing that has caused pause for me, is simply that the district would be losing a great teacher. He is able to convey a knowledge of math in a way that I wish I had been exposed to in my younger years. He is such a dork about it, too. He genuinely loves pi and can wax poetic about the romanticism of this wonderful number... We are just trusting the process on this one. If it is meant to be, it will be.

In the meantime, I'll be keeping up with all the acronyms in my life! If you see me bouncing down the hall, know that it is just the tune of "Old Mac Donald Had a Farm" jingling in my brain! E-I-E-I-O!

Not Bald, Tattooed and In Rehab... Life's Good

2007-02-25T09:29:00.000-08:00

A recurring theme in my life is about learning to let go. Letting go of outcomes... Admitting powerlessness... Being presented with evidence that things I absolutely knew were true, aren't necessarily so. Maybe that is why spiritual truth is so pertinent in my life... I'm seeking. Always seeking...

Life is full of paradoxes. For the past three years, I have beat the inclusion drum... I have advocated for students with disabilities to be included in the regular education setting. I have pounded concepts of Least Restrictive Environment, accommodating students in the regular classroom and making appropriate modifications so that all students might be included and successful in the general education setting. However, this year, I'm teaching in a resource classroom. Just when I KNEW absolutely what was RIGHT about inclusionary education, God presented me with students who needed a more exclusionary setting to be successful.

I have further always resisted any notion that my children might need "more restrictive" medical procedures. We do constant "bronchial hygiene" at home. We take medications as the need arises. We are pleasantly invited to take a vacation at the "Spa", as Dr. Sindel likes to call it... This is where the girls are now. They were hospitalized this past Monday. We do all of these things. I stay with the girls and have always tried to balance what is best for them physically with what is best for them emotionally, spiritually and mentally. Doctors look at their physical health, but sometimes forget the fact that they are people. Because of this, we haven't allowed the placement of a port-a-cath in either of the girls. A port-a-cath is a permanent line placed in the chest, (or I have recently discovered other interesting body locations), to make administering I.V. medications easier. The port is inserted under the skin, with a line running directly into a main vein to the heart. It looks simply like a thin bottle cap has been inserted under the skin. Doctors have been trying to get me to agree to this procedure since the girls were young. I wanted the girls to have days, weeks, months and years where they weren't dealing with an extra thing in their chest... If it isn't being used for I.V. administration, it has to be flushed once a month. One more reminder... "Oh yeah, I have cystic fibrosis." For those unfamiliar with the concept of puberty, girls begin developing breasts during this time. This has also been a consideration for not having a port placed until the girls were older.

The benefits of a port, however, are numerous. And, every time I sit with my girls while they are running mid line catheters up their arms, I am reminded of why the doctors think it would be best. This time, the PICC nurse, (a really wonderful nurse named Ingrid), stuck Dan twice, but the guide wire wouldn't go through. You see, after someone has had numerous I.V.s and lines run, the veins begin to branch off. We had to quit and go back the next day to try again. Danielle cried when the wire couldn't go through. The tears just welled up in her eyes until they spilled over her cheeks. And, I swear to you, a part of my soul is ripped out every time I sit and hold her hand and watch.

Sarah also had to have a mid-line run. She cried too, but they were able to get the line in. As I was rubbing her hair, soothing her with words of: "It's O.K., Honey... It is going to be O.K. Just a few minutes more..." Sarah cries, "But, Mama, it's really not O.K." And, again, I'm left just trying to pick my heart up off the floor, lest it get stepped on by a well-meaning nurse.

I always feel so absolutely inadequate when faced with the medical decisions. However, the overall ideal that I have tried to follow is a simple one: We live with cystic fibrosis, not for it. The girls can be and do whatever they want in spite of the fact that they have this disease. God is all powerful and we are relying on the miracle. Still, it's more of a philosophy than anything that is able to give me absolute guidance in times of need... How am I to know when the time is right to allow the placement of a port? Honestly, part of holding off has been that the girls get to make their own decision about it. Having a port would mean less painful sticking...

Now, Dan is older... And, she decided she wants one. We went ahead and scheduled the surgery for Monday. And, after spending some time in prayer I really heard the words: "Trust the process." I say it to my students all the time. Amazing how my own words come back to me. However, after we went back the second day, Ingrid, was able to get the mid line placed. It was smooth sailing the second day with no tears. My heart remained in my chest. So, we decided to cancel the port placement until the beginning of Dan's next hospitalization. That will give her a few more months, maybe even a year or two, to live without a bottle cap under her skin. And, Dr. Sindel assures me that when the inhaled powder medications become mainstream and the genetic cure is available, we can remove the port. So, I'm trusting the process...

I often wonder why God chose me for this job of CF Mom Extraordinaire. I'm humbled, and I'm not worthy. I whine to my friends when things get hairy. But, in moments of reflection like this, I know that I am the luckiest mom in the world. I know that I have been drawn into a closer relationship with God, an absolute reliance on seeking spiritual truth, because of being Dan and Sarah's mom. It is my most important job. I'm grateful that God wanted me. What an honor!

And, somehow, my friends and family have provided the support to make trusting the process a little easier. Friends have been visiting. Randy, the girls' dad, and Dave are currently trading off stints at the hospital. Somehow I was fortunate enough to marry two really great guys in one lifetime. Kristine, Randy's best wife, calls every day to check on the girls. Maxine and Wayne, Grammy and Grampy, (Randy's parents), are staying a night too. My parents are also up at the hospital constantly. Aunt Micki has supplied plenty of junk food, and calls daily to check, as well. So, honestly, what am I complaining about? The answers aren't easy, but we all muddle through together.

So just for today, I haven't freaked out, checked myself out of rehab, shaved my head, gotten a tattoo, beaten up a papparazzi with an umbrella and checked myself back into rehab. It could be worse... I've just managed to sit in the heartache of sometimes feeling helpless and not knowing what to do. That's life.

I'm left feeling grateful. The lessons come for me when I am open to receive them... I'm thankful that I don't always know the right answers... I'm thankful for the process...

Making a Difference

2006-12-31T15:43:00.000-08:00

Don’t we all just want to know that our very existence isn’t just for naught? I mean, my brother is an actor/writer/director… He creates because he feels passionately, and he wants to bring meaning to life’s experiences. At least that is what I have always believed about what he does. My sister is a nurse. Her life is about assisting those in moments of great vulnerability. My cousin is a plumber. She works with her husband, and together, they strive to improve the quality of life for customers by helping fix pipes. Lots of times, they manage to ensure that the aroma of human waste isn’t the first thing people experience in the morning. These roles that my family members play are important in society. They make a difference. I can see it.

When I first started teaching, I was filled with all sorts of notions about “making a difference”. Maybe that is what everyone strives for in life… A sense of meaning… A sense of purpose… But, as with everything, I carried this idea of making a difference to a whole different level in my own mind. I wanted every student who passed through my door to develop a sense of self-worth, a love of learning, a respect for life and the miracles that it holds, a feeling of security and independence, and knowledge that they were the masters of their own destiny.

This is my seventh year of teaching. Tonight, I ran into a former student at the mall… A student from my first year… “Joe” transferred to me from another school toward the end of the school year. I only had him in class for about 4 months. However, his file was probably two inches thick. In special education, I suppose the student with the thickest file wins. Joe’s file was rife with reports about his horrible behavior problems. As I read through the file, my head was certainly filled with visions of terror… “Jumping from the tops of file cabinets…” “Cursing…” “Threatening to ‘dismember’ the student teacher”… Those are just the bits that I remember all these years later. But, amidst all of that, I saw that the kid had an I.Q. of 135. And, given my clientele that first year, I figured he would fit right in. The students I had my first year had horrible behavior problems. Many of them hailed from the projects and are now known drug dealers in our fair city. So, Joe didn’t really seem too different from any of the rest of my students, and I was questioning whether or not I was going to continue teaching after that first year anyway. I figured he could ride out the rest of the year with me and maybe I could find out why this bright kid, with unlimited potential was a) in special education, and b) saddled with a file that read like a rap sheet.

The remainder of that year was a wild ride. I was just holding on for dear life, doing the very best I could with a whole gaggle of very difficult students. And, for some reason, Joe never gave me a lick of trouble. He would find reasons to come back to my class in the afternoon. He was supposed to return to his homeroom class for Science and Social Studies, but usually he would meander in and we would talk. Honestly, I was grateful for his company. He was so smart and funny. One time, I even had an opportunity to show him his file and ask, “What are these reports doing in here, Joe? I don’t get it. You don’t act like this in my class.” He would just shrug and say, “I never felt like I needed to do that here. You get me.”

Joe moved before the end of the school year. Maybe that was part of the problem. He moved quite a bit during his elementary years. But, his mom had said that they were staying in Gautier, so I hoped he would get a chance to finish middle and high school with the same group of kids.

Tonight, I saw Joe at the mall. He is running around with the “gothic” kids. He looked basically the same, and I had a chance to speak to him.

“Joe Neely,” I called.

“How do you know me?” he responded. He looked at me, snapping his fingers trying to put a name to my face.

A friend joined him, who was a former student of our school and prompted, “She’s a teacher…”

After much struggling with his memory, I let him off the hook and told him who I was. I don’t honestly believe that he remembered me. He just said, “Teachers and me did not a good team make…”

I asked him how he was doing and he revealed that he has quit school. He is sixteen now. He never made it to high school. He quit in middle school. When I asked what happened he said, “I just wouldn’t do the work.” He says he plans to get his GED and go to college. I encouraged him to do just that.

Obviously, I didn’t really make the type of difference I had intended for Joe Neely. He didn’t even remember me. But, maybe Joe made a difference for me that year. I remember contract renewals came around at the end of my first year and I did not sign mine immediately. My co-teacher, and now friend, Kenna, kept telling me that I couldn’t quit. Still, I thought, “Like hell I can’t quit… This is too hard. It isn’t worth it.” Then, I thought about Joe and kids like him. I thought, maybe I can make a difference for those kids. At least he went to one school where someone “got him”.

I’m sad that I didn’t make a bigger difference for Joe. I want him to get a high school diploma. He is probably still the smartest kid I have taught. But, maybe kids like Joe are just thrown into the mix so I can make a difference for some of the others. I don’t really understand how God works it all out or keeps it all straight.

At the end of each school year, I write my students moving on to the middle school a letter. The letter is personal for each student, but usually I tell them the story of Albert Einstein… Here is a portion of a similar letter to another student: “Being a person of true character means meeting your disability with an attitude of gratitude. Being grateful for the gifts and abilities you have, rather than focusing on the areas you are lacking will help you build your strengths and minimize your weaknesses. Albert Einstein (one of the smartest men who ever lived) had a learning disability. His mother did not listen to the teachers who told her that he did not have the capacity to learn to read. Because Einstein's mother believed in him, he began to believe in himself. If I could give you any gift in life, it would be the ability to believe in yourself. I believe in you. You can be your own worst enemy or your own greatest ally; the choice is yours.”

Interestingly enough, Joe’s presence in my classroom led me to conclude that I have certain gifts and abilities to offer my students. Because my class was the one place he didn’t exhibit behavior problems, I thought that maybe I could offer something to others with significant challenges. I think I have gone on to offer something. I’m not sure it is as grand and wonderful a something as I had hoped it would be in my first years of teaching. But, I know for sure that the choice to continue trying and believing is mine alone.

And, who knows… Joe and I have crossed paths again. Maybe that diploma is on the horizon for him. (Wink.)

Love and Betrayal

2006-12-24T08:45:00.000-08:00

Recuperating isn't my strong suit. Yesterday, I got up, tooled around the house and did some laundry. Last night, my abdomen and some other unmentionable areas swelled up, giving me the appearance of a woman six months pregnant. So, today, I have decided to actually rest.

Dave tried to talk sense to me... Really he did. "Honey, you have got to stay in bed."

I stubbornly replied, "Why? I feel fine!"

"Because you have been stabbed three times." Dave has such an eloquent way with words.

I didn't really listen yesterday. Today, I think I will. Thus, I'm sitting here in bed while my family went off to church. I'm really glad they went. It is so wonderful that Christmas Eve is on a Sunday this year. We do a beautiful candle lighting service at church in which people sign up to light a candle as a disciple. I signed up to light a candle. I can't remember which disciple I was supposed to represent, but Danielle is going to stand in for me.

In Unity, each of the disciples represents one of the twelve powers of man. I have always found it so ironic that Judas represents life. Judas... What in the world was wrong with that guy? He betrayed Jesus by identifying him to the soldiers. And, it wasn't just any betrayal. It was a betrayal with a kiss. In reality, that is probably how betrayal happens most often in this life... We usually hurt the ones closest to us. And, not because we want to hurt them... We are just so wrapped up in our own lives that we incidentally hurt the ones we love. Perhaps that is why Judas represents life. Life happens amidst the betrayal. Rebirth happens despite the betrayal.

Dave's sister, Deb, and her children were supposed to join us for Christmas this year. Unfortunately, illness has struck and they won't be able to make it. I'm really sorry they won't be able to come, but grateful they aren't coming if they are ill... We really can't handle any more sickness exposure with the girls. But, at the same time, I hurt for my husband. Dave has very little family left. His parents have both passed on. He has a brother and a sister. His brother is very ill right now. He was really looking forward to seeing his sister and spending time with his niece and nephew. I'm sure we can reschedule the visit for another time, but I just hate to see Dave disappointed.

My marriage to Dave isn't exactly a typical love story. I met Dave two weeks before he was scheduled to leave the U.S. to move to Italy. He was an officer in the Navy. We met and established a friendship. And, truthfully, I fell for him instantly. Plans were made for me to visit him in Italy. Dave claims that I began stalking him. I suppose one could call it that. I wrote, e-mailed, and made him tapes every day. He was pretty much the exact opposite of any man I had dated previously, and that was exactly what I was after. After visiting Italy in June and experiencing a whirlwind romance, I returned in November and we agreed to be married. I wish it was more romantic than an agreement, but it really wasn't... We were just being practical.

I was still legally married to Randy, even though we had been separated for about a year... Because of the girls, insurance was a major consideration. Randy was getting out of the Navy and the girls would no longer be covered. Thus, Dave and I decided to get married right away so the insurance coverage wouldn't lapse. Some people would probably be horrified to hear that I married my husband for the insurance, but truly, that was the reality at the time.

I do know that I earnestly prayed for God's will in my life every day after Randy and I separated. Dave and I certainly had our ups and downs that first year of marriage. We were living apart and he was getting out of the Navy. He was also seeking to become a more spiritual person each day. I watched him grow and struggle from afar... And, I began to know this man who was my husband.

Dave is dedicated and predictable. He adheres to a routine with an autistic-like fervor, at times. He is able to get the girls up each and every morning, making sure treatments and vest are started before he makes his way to the gym. He is thoughtful. He calls if he is going to be late, and does little things he thinks might make me happy. He is funny. Every day is full of laughter because of Dave's sarcastic wit. He is also smart. He is a brilliant math teacher, but he also knows lots of other interesting bits of information... And, what he doesn't know, he delights in making up.

The thing that most people don't know about Dave is that he feels deeply. I know there isn't anything Dave wouldn't do for me and the girls. He is completely dedicated to us. He signed up for this life. I was a single mom with two daughters with cystic fibrosis. Most men would have kept walking without a backward glance. But, he stayed and despite our quirks and idiosyncrasies, he loves us more than anything in the world. He usually doesn't say it. He isn't a "gusher". But, he shows us love each day by being there and walking through this life with us. Family is important to him.

That's why I'm sitting here in this bed today. It is part of my own weird love story. Dave and I haven't been able to have a baby thus far... This surgery was intended to repair problems that are causing infertility for us. Probably, a lot of people think I'm nuts. "You have two kids with cystic fibrosis... Why in the world would you want to have another baby?" I can answer that question... Because of Dave Maxwell... Because of all the times he has stayed at the hospital with Sarah and Dan... Because of all the times he has done the "one more thing" so I didn't have to... Because of this love that started off as a simple agreement about insurance and has become the deepest, most important commitment of my life.

I guess that is why Judas represents life... Life endures betrayal. In fact, sometimes betrayal brings us into relationships with people. I honestly believe people are basically good at heart. I know in my own life, I don't seek to hurt the ones I love. Sometimes it just happens because I am caught up in my own needs and wants in the moment. I'm certain that very concept was behind any actions I might perceive as betrayals toward me. But, love... Real love surpasses all that. And, fortunately, in my life I get to experience lots of little moments of real love strung together. The betrayals sometimes lead the way to a greater love. Life marches on.

Roto-rooter Procedure Completed

2006-12-23T03:44:00.000-08:00

I had laproscopy surgery yesterday to remove some things that were growing in places where things shouldn't be growing. The doctor got almost everything straightened out, with the exception of one small item. However, after 3 hours into the operation, one of the pieces of equipment broke, people were frustrated and snapping at each other, and Dr. Koulianos decided that it would be best to continue on another day. I'm really grateful for his decision. I don't want to go back and do this again, but I also don't want negative vibes entering my body either...

Dr. K said that he has done a lot of these types of surgeries and I am now in his top 2 patients of things that can be wrong with someone all at the same time. I have always been an overachiever! It is amazing to me that things can grow wildly inside my body out of nothing. At the same time, however, that reaffirms my belief that things can heal wildly out of nothing too. Tumors and cysts and extra growths spring forth from our regular body processes. If this can happen, it makes perfect sense to me that spontaneous healing can occur too. Believing and manifesting are two different things, though. So, I continue to trust the process with all the doctors in our lives.

The girls are doing much better, although Sarah has a slight cold right now. Keep her in your prayers. I am giving them some immune boosters from the health food store. They seem to be helping. We have also increased our prayer time and recommitted to our daily affirmations. Whatever the reason, the girls have improved and I am totally grateful.

I have so many things for which to be grateful... My husband, Dave, has been taking extra good care of me as I recover. My girls have been quiet, and are getting along with each other. (I told them that fighting amongst themselves would stress me out.) My parents are helping take care of the girls while I am out of commission. I have wonderful friends who have been checking on me... Kenna and her mom had a lady come and clean my house yesterday. I am just so overwhelmed with goodness.

In just two days, we will have a wonderful Christmas celebration. This year, I am resting in the spirit of hope and renewal that Christmas brings. I have brand-new, squeaky clean insides... I have the peace that comes with trusting the process. I am healthy, whole and well today. And, for that I am thankful.

~Namaste'~

40 Days in the Wilderness

2006-12-02T04:47:00.000-08:00

Fear is a terrible thing. I don't usually walk around in the world afraid. Thankfully, almost twenty years ago, I began a path that served to alleviate the gut wrenching fear I lived with daily. I made a choice that I wanted to live a spiritual life. If you had asked me at the time, I probably would have denied that is what I was doing. But, I can assure you, that is how my life has turned out... A spiritual walk with my Creator.

So, why was it so very easy for me to fall into a pit of despair and terror this week? We started off the week with CF Clinic. Sarah had begun running a fever, and that continued when she went in to see the doctor. As a result, her pulmonary function tests, or PFTs, had fallen by about 50%. This, naturally, resulted in a hospitalization for her. Both girls had been hospitalized the Monday before Thanksgiving, but were allowed to go home on I.V. antibiotics. Given that this course of treatment is usually successful, I was very concerned. Serving to further alarm me, Dr. Sindel reported that Sarah was growing not only Pseudomonas and Alcaligenes Xelodan, which is fairly normal for her, but something different called Trichosporum. However, after further research, Danielle is also growing all three, but her pulmonary functions had improved with I.V antibiotics.
Sarah was admitted to the hospital on Monday, and being the CF Mom extrodinnaire that I am, I promptly got out my handy dandy laptop and googled Trichosporum. The information I read scared the willies out of me. Usually, cancer patients or patients with immune deficiencies contract this fungus. Thus, most of the articles were citing morbidity rates. I was absolutely beside myself. I did learn other helpful information about treatment options, but I was still so terrified that something awful was going to happen to my child.

Dr. Sindel ordered treatment with Voriconazole, which is an antifungal medication. After a couple of days, Sarah developed terrible itching and began breaking out in hives. Evidently, this can be a side effect of this medication. So, they changed her to Itraconazole in an oral medication. She is also taking I.V. antibiotics: Maxipime and Azactam.

And, we waited... Randy, Dan and Sarah's Dad, stayed at the hospital with Sarah on her last night. I was so relieved to get a phone call from him yesterday morning, as I blogged this entry, telling me she was being discharged. Danielle is still on I.V. antibiotics, but is currently under no treatment for the Trichosporum. She is scheduled to be seen at CF clinic on Monday, so we will address that issue then.

To further shake my foundation, in the midst of Sarah's hospitalization, I learned that my dear friend, "Mama Jane", had been in a terrible car accident and flipped her car three times. She had to be air lifted to USA Medical Center right near USA Women and Children's Center where Sarah was staying. I felt so fortunate to have been able to go see her in the hospital. She has a broken arm and a broken leg, but proclaimed that God was with her through the entire ordeal. She also said that three flips in a car makes for a really long conversation with God. I can only imagine! Thanks so much to the young men who stopped and pulled her from the car.

Emotionally, I was feeling so overwhelmed with fear and worry. I started feeling better Friday, but I really wasn't myself all week. Tears were apt to spill at any time, and fear gripped me in a way that I haven't known in so many years. And, I prayed. I have been in constant communication with God, but I continued to feel so far away. I just couldn't seem to get back in contact. I felt absolutely lost. I was reminded of the Bible story in which Jesus went into the wilderness for forty days and was tempted by the devil. When he returned, He was stronger and ready to pursue his ministry. I suppose it was a choice for Him. Which life do I choose? Do I choose to live a spiritual life in faith and trust with the Father or die a non-spiritual death? Jesus, of course, chose the spiritual life in faith and trust. And, I suppose if Jesus took forty days to figure it out, why should I expect to be any quicker about it? Still, I wanted to have that peace and serenity. I don't like feeling afraid. And, I feel so responsible for the climate that is set for my girls. I want them to embrace the Truth of God's Healing rather than the seeming realness of all of these appearances.

So, yesterday, I wrote the above paragraphs right before leaving for Mobile. (I edited them a little today so they would make more sense in the current context.) I had to stop for gas prior to the drive. As I pulled into the Fast Track, a gentleman approached me and said, "Excuse me, ma'am. May I give you my testimony? It will only take a minute." I looked at the man, who was a tall, thin black man with gold on his front teeth. The initials "J" and "K" were carved into the gold. To the casual observer, we were from completely different worlds with nothing in common. It would have been so easy to judge, but given my current crisis of faith, I knew that I needed to hear testimony from somebody so I said, "Sure. I would love to hear your story." He introduced himself as John. John began telling me that his blood sugar dropped to 20 in June of this year. During this time, he had an experience in which he was visited by the Holy Ghost. He experienced a tingling sensation and was given a message that he was to share this healing with as many people as he could. He told me to read John 5:1. He also told me to keep on the "right side" of Jesus, as that is where the spear was inserted when he was on the cross. John said a lot of other things, but I really was just so overwhelmed that God had sent this angel to me at the precise time I needed him, that I couldn't absorb everything.

However, I got the message loud and clear. I understood that God is with me. God is Health. The girls continue to astound us all with their overall health and ability to live life in the face of the disease called cystic fibrosis. But, there are times when it is so scary... Keeping words of faith and health in my mind and mouth are precisely what I need to do during those times. Usually, I'm pretty good at keeping focused on God. This time, I allowed the fear to wash over me and drag me to a place where I couldn't feel God's presence at all.

Not feeling the presence, didn't mean that it wasn't there. Sarah's pulmonary functions improved while she was in the hospital. Both girls have a significantly decreased cough. Yesterday, Dan marched in the Gautier Christmas Parade with the rest of her bandie friends, and Sarah was miffed at me because I wouldn't let her march with her dance troupe. They wanted to go to Moss Point's Christmas by the River last night, but I insisted that we stay home because it was so cold. Still, my girls are ready to get back out and embrace life. And, I am proud of them for that... And, funny enough, that was Jesus' message conveyed in John 5:1-9:

The Healing at the Pool
1Some time later, Jesus went up to Jerusalem for a feast of the Jews. 2Now there is in Jerusalem near the Sheep Gate a pool, which in Aramaic is called Bethesda[a] and which is surrounded by five covered colonnades. 3Here a great number of disabled people used to lie, the blind, the lame, the paralyzed.[b] 5One who was there had been an invalid for thirty-eight years. 6When Jesus saw him lying there and learned that he had been in this condition for a long time, he asked him, "Do you want to get well?" 7"Sir," the invalid replied, "I have no one to help me into the pool when the water is stirred. While I am trying to get in, someone else goes down ahead of me." 8Then Jesus said to him, "Get up! Pick up your mat and walk." 9At once the man was cured; he picked up his mat and walked.

Now, curiously enough, because I sometimes get things backwards, and again, because I was so overwhelmed that God sent me an angel precisely when I needed him, I looked up John 1:5-9:

5The light shines in the darkness, but the darkness has not understood[a] it.
6There came a man who was sent from God; his name was John. 7He came as a witness to testify concerning that light, so that through him all men might believe. 8He himself was not the light; he came only as a witness to the light. 9The true light that gives light to every man was coming into the world.[b]

And, so, I learned some things about trust and faith. I also learned about that light within each of us... For today, know that the light in my heart bows to the light in your heart.

Stone Soup

2006-11-04T04:39:00.000-08:00

Every year I have taught in my own classroom, I do a unit on Stone Soup. For those unfamiliar, Stone Soup is a classic tale about three hungry soldiers coming home from war. As they make the arduous journey home, they come upon a village and ask the peasants for food and a place to sleep. The villagers are quite concerned about having to share with the soldiers and after hiding all their food, explain they have little enough for themselves. The clever soldiers declare they will help everyone by making stone soup. Upon filling a pot with water and stones and starting a fire ablaze, the soldiers say, "Oh, this soup is good, but it would be much better with a bit of salt and pepper..." Many other ingredients are added in the same way. Each time, the villagers bring vegetables and other soup ingredients to make the soup better. In the end, the peasants and the soldiers have a wonderful feast together. The soldiers are treated as honored guests rather than a pesky imposition. Lesson plans always encourage the teacher to explain how the soldiers tricked the villagers into sharing.

I love the story. We always do activities surrounding the story. We define vocabulary words and explore measurement using cups, teaspoons, etc. And, of course, we talk about the underlying moral of the story. We review the importance of sharing. We talk about how the soup is like our classroom... It is better because each of us bring a unique and important ingredient to our group. We talk about sharing ourselves with each other. We even talk about fear and hoarding, and how these things hinder prosperity. Always during the course of the unit, we make stone soup. It is usually very tasty, but this year it was particularly delicious. I think I enjoyed it more because this year, one of my students taught me a poignant lesson.

We began the lesson by defining some important vocabulary words. One of our words was soldiers. Before we look up the definitions, I ask that the students give me a definition in their own words. A student I will call Elliot raised his hand, sat up straight and tall, and declared, "Soldiers are people who work together..." At this point he stammered a little and lost his confidence. I deal with that a lot when a student has a learning challenge. They aren't confident in their abilities and their knowledge. So, I said, "Yes... Go on..." He began again, "Soldiers are people who work together to kill other people." I'm sure the look on my face was unreadable. For just a moment, it felt as if the world had stopped in the classroom. I quickly regained my composure and said, "Elliot, some people would probably have a problem with your definition, but you are absolutely right. In fact, your words are so important to me, I'm going to write them down to keep for myself. I may write something on my blog to share with everyone."

I'm not political. I always vote, but I really don't like to vote. I have never actually felt as if I was endorsing a candidate I fully believed in. In fact, in local elections, sometimes I don't even know the candidates for whom I'm casting a ballot. It's actually a little embarrassing. Perhaps I should be more informed. Sometimes, I really exert the effort to educate myself, but here, they always throw in a strange one... "Vote for the New Coroner." How on earth am I supposed to know who would make the very best coroner? Some things shouldn't be a vote. A committee of persons educated in such matters should be handling that bit of hiring. Still, when elections come around, I go vote. I cast my ballot. I wear the little sticker all day. I do the deal. When my girls were young, I took them with me. I talked about the importance of living in a democratic country. I sang on high about voting and how we live in a wonderful country in which we are allowed to vote. Other people in the world don't have that right.

Then somehow my right to vote, ties in with the ugly fact that people died so that I could live in a free country. People died so that I might stumble into the booth and vote for a coroner that I don't know and hope I don't need for a long time... People died... "Soldiers are people who work together to kill other people..." People got mad about a king in England taxing them. Money is a powerful motivator. People were outraged that their feelings weren't being considered. They dumped some tea into a harbor and set about fighting for their rights. It was a revolution... Soldiers worked together to kill other people... People died... Southerners later developed the nasty habit of buying and selling other people based on skin color.... These people were required to work on plantations and weren't treated well in some cases. It was a travesty. It was wrong. The south still hasn't fully recovered in many respects. Other people knew it was wrong, but I can tell you for a fact that in the south, we don't like to be told what to do. In the south, we said, "Forget you... We don't have to be a part of your silly country... We'll make our own country." Some people here still think they are in that separate country... It was a civil war. Soldiers worked together to kill other people... People died... America became a land of prosperity... Our economics affect other countries. In America, individuals have a right to pursue happiness. We began to be a beacon of light for those without hope... We had such a gift, this freedom... We had such a wonderful thing... Democracy... It seemed only right we should share our gift with the world. Surely, all people have a right to be free. Other wars were fought on this premise. America must be the champion for the weak, the oppressed, the down-trodden... People worked together to kill other people all over the world... In other countries... Sometimes for causes that were gallantly noble. People died...

As I type this, people are working together to kill other people. People are dying... Why? I don't think anyone really can give a sufficient answer. Some people try to tie this war to "my freedom"... "Soldiers are dying for your freedom," they say... The bad guys crashed planes into our towers. They attacked our country. The "evil-doers" are trying to interfere with "our way of life". North Korea is getting nukes. We can have nukes, but other people shouldn't have them. Other people are crazy. We're in danger. SOLDIERS ARE PEOPLE WHO WORK TOGETHER TO KILL OTHER PEOPLE. People are dying...

A red flyer showed up in my box a couple of weeks ago. The flyer asked people to wear red on Fridays as a sign of support to our troops overseas. I support our troops. I come from a family of military men and women. I know first hand the sacrifices they make. However, I also don't like to be told what to do and when to do it. I didn't like the idea that someone might think if I don't wear red on Fridays, I don't support my troops. However, rather than keeping these ideas to myself, I spouted them off to my dear friend, Billy. He probably shook his head and said to himself, "That crazy Maxwell... She has a screw loose." That's just his way. I later learned by accident that the flyer actually came from Billy. I felt terrible. I don't know his personal family situation. But, I know that people are dying. And, I know that I care very much whether that has affected my friend in any way at all. If it is important to him, it is important to me. I'll wear red on Fridays. But, now it has taken on more meaning for me. "Soldiers are people who work together to kill other people." People are dying... People have died... In the larger scheme of things, I don't understand it.

And, I'm really sad about that today. I'm really sad that I can't see the value in a war that no longer has anything to do with my right to get into a booth and vote for a coroner I don't know. I'm sad that I can't even buy into the fact that this war has anything to do with the towers that fell. There's even a country song out that tried to convince me that is the reason we are at war. I'm sad that as a society, we largely don't value each other's individual beliefs and differences. I'm sad that there aren't any easy answers. But, I know for sure that whatever the question, love is the answer...

You see... that is what Stone Soup is all about... LOVE... The villagers were afraid... They were afraid there wouldn't be enough for themselves. They were afraid that by sharing what they had, they wouldn't have enough... Interestingly, sharing doesn't work that way. When people share, each one walks away better for the experience. Even when one person sets out to take advantage of another, lessons can be learned that better the future of everyone involved. The soldiers tricked the villagers into sharing... The soldiers tricked the villagers into loving. Love is a verb, an action word. Perhaps if we can each add a bit of our true selves to the soup of life, we could really make a delicious soup. Maybe soldiers could evolve from being "people who work together to kill other people" into "people who work together to trick people into loving each other"... I'm sure in some instances, that is exactly what our troops may be doing. I'm wearing red for those soldiers on Fridays... I'm hoping that in my little way, I can trick people into loving each other.

"Many thanks to you," the people said, "for we shall never go hungry now that you have taught us how to make soup from stones!"

~Namaste'~