Monday, December 28, 2009

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

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!

Saturday, December 19, 2009


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.

Sunday, November 22, 2009

I Can't Know...

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:

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.

Sunday, October 18, 2009

This Conscious Moment Brought to You by Micah...

This morning I had a Conscious Discipline "Ah-Ha" moment! Conscious Discipline is a program developed by Dr. Becky Bailey 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.

Tuesday, August 25, 2009

Peace and Everlasting Gobstoppers

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.

Wednesday, August 19, 2009

Magical Inhalation

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.

Tuesday, June 16, 2009

Danielle Update

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!

Wednesday, June 10, 2009

Child-Like Faith

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. -

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.

Monday, June 08, 2009

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

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.

Saturday, April 18, 2009


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.

Monday, April 13, 2009

Republishing My Blog

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