Honestly, Rett Syndrome is very hard to deal with on day to day basis. Annie's entire body is effected by Rett, there is not 1 thing she is able to do on her own, this is a very tough life both for her and our entire family. I remember when she was first diagnosed I was swarmed with stories of people with disabilities who had beat great odds - a man without legs who was able to run a marathon with prosthetics, a quadriplegic who had set up a website and started her own thriving business, you know the inspirational stories that pop up in the news. The problem is that I have a kid who's brain doesn't talk to her body - Rett Syndrome is so different - it affects everything and there isn't a treatment, a technology, a prosthetic, or anything that would be able to catapult Annie to be one of these "inspirational stories". Sooo, what we have had to do is change our perspective. We had to start shooting a little lower and start realizing that every accomplishment, no matter how little, IS inspirational - maybe not to the rest of the world but to us, to Annie, to our family any stride Annie makes is a reason to celebrate and rejoice that we have taken back that little piece that Rett has stolen.
That being said, I want to share the most wonderful day we have had in a very LONG time! Last week Wednesday Annie and I headed out to therapy like we do every Wed. During OT I called our cardiologist to get the results of Annie's 24 hour Holter monitor. Perfectly NORMAL! Throughout the entire 24 hours Annie's heart was completely healthy and normal! Praise God! I was so thrilled and relieved. OT finished and Annie and I headed to Target for lunch. While eating I called our insurance company - making a pest out of myself I had decided to call every other day so that our primary insurance would hurry up and reject the claim for the eye gaze computer (I was certain they would not pay for it) so the claim could then be sent to our secondary insurance co. (whom I was sure would pay for it but only after they "thought about it" for 6 months or so). You can imagine my surprise when our insurance company said, "oh yah, the claim from PRC, we approved that yesterday, your letter is in the mail". I have never been so thrilled, I thanked the guy on the other end and then proceeded to explain how much this device would mean to us, that I have an almost 6 year old who has never uttered a word and would finally be able to "speak". Yes, as usual I talked for too long and offered way too much information, I hung up sobbing happy tears, the guy on the other end was probably left wondering if he should have called mental health! So lunch ended and we headed back to therapy this time for a little PT. Annie was in the best mood (wouldn't you be if you had just been told that soon you would be able to communicate?) and she just shined in her session. We have been working on transitions, sit to stand, stand to sit, for years - what a process, so much we take for granted. Annie has slowly been able to get the strength to perform this task but typically it takes moderate assistance. This particular day Annie went from sit to stand and stand to sit with only verbal prompting and a hand for stability! Imagine, a child who's brain doesn't communicate with her body and yet she still fought for her body to get past the apraxia and follow a command! I couldn't have been more proud of her! I can't tell you how much I cried last Wednesday, it was a lot but the weird thing was it was happy tears! That doesn't happen very often, I didn't want that day to end. I'm praying for a time when the happy tears far out weigh the sad ones. Each day we get closer! Until then I will hang on Annie's accomplishments, no matter how small they may seem to the rest of the world.