The Roll Lady

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!

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

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

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

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

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

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

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

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

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

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

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...

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

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...