Oh, and she just did! I know that it is nothing new that life is a roller coaster. The last few days have been a ride with levels that I never could have imagined. But before I get into that, let me back up. In my last post I discussed how Claire had been having a really hard time. It seemed as though she didn’t have a standing chance against her body. I will admit that at the very end of this last run of crazy, even I had lost sight of the possibility that she would bounce back. Watching her flail like that was new and different and I for some reason associated different with not good, praise God, I was WRONG. Never in my life have I been so happy to be corrected by my child. It is so humbling, knowing that I had started to give up a little when she was deep inside, fighting like hell to come back, and she did just that. It has been almost two weeks since the end of that craziness. I wish that I could figure out what happened, what caused this to turn. Logic tells me that in order for somebody to go from being so out of control of there body, for an unspecified reason, that something has to change or happen to make it better. Here is a list of the things that we have changed, not sure if any of these by themselves or in some combination are what did it, but these are the only variables that I can think of:
-stopped using Nasonnex for allergies
-added coconut yogurt as dessert after dinner
-started listening to the Beastie Boys in the car
-learned that Guy Fieri has a restaurant close enough for us to visit (she is overcome with him, could watch Diners Drive-Ins and Dive all day!)
-was given the oppertunity to answer questions in group at school and got them all right (sad, this is new, all due the Susan Norwell handouts from the conference)
Yes, our life is that boring and predicable that in 10 days, those are the only things out of routine that happened. With those being the only changes that have happened since she snapped back and came back to us, let me tell you what new and exciting things she has done in the last 48 hours. I will have to just list them because there is too much for me to try to put in paragraph form, I am loving this problem!
-reached ot goal of lip closure with straw drinking, I can count on one hand the ot goals that she has reached in a lifetime
-when a new consultant came to the house to meet her, Claire immediately looked at her talker to say “It’s nice to meet you. My name is Claire. I am 5 years old. This is my talker, it helps me speak.) Before going to to tell her full range of jokes.
-played keyboard (the full range of keys) with her elbow while holding the pt’s finger and side sitting, she also laughed hysterically when she turned on the very loud background beats, which she had to cross mid line to do
-walked 12 minutes on the treadmill without a break, using much less assistance from the pt than normal
-drank an entire glass of milk, ate all of her veggies, pasta and yogurt in just over 30 minutes (dinner typically takes at least an hour)
-balanced on the toilet all by herself for several minutes
-communicated with her aide that she wants to use the raising of her leg as a signal for when she wants to go to the bathroom, then used the signal 5+ times, going right away each time
-stood holding onto nothing more than the bottom of my shirt for several minutes (while Chloe peed on the big potty for the first time)
-stood for 20+ minutes, with her arms on the counter in the bathroom while I again attempted to wrangle Chloe, the whole time either looking at herself in the mirror and making funny faces or laughing at the shenanigans that was underway, not leaning or slouching once.
-purposefully threw her arms around my neck and squeezed to give me one of the best and most memorable hugs of my life
It has really has been a record breaking few days in our little world. It leaves me with so much to wonder about. Like how does she she go through the bad days, never giving up. When she can’t hold her head up to eat but she is still trying. When her legs won’t support her weight and she still does her best to stand. What on earth is going on in her head that would temporarily take so much away from her and then return it only to be stronger. As a 5 year old, how does she cope with these sudden swings in what she can and can’t do. How did I ever let myself give up before her? How much longer will this go on? Will it be two weeks on two weeks off forever? Either way, I will take it. As hard and painful as the hard times have been. Knowing what I do know now, I would do it all again to get where we are today. Today Claire was better able to be herself than I would have dreamed of a year ago. She continues each day to show us the level to which she fights, the depth of her spirit and the brightness of her personality. Our first week in rettland another rett dad told me, “Claire will do exactly what Claire will do.” To this day I am still wrapping my head around that profound truth. As I step into tomorrow, not knowing what it holds, I know that she will do just that and with no expectations I look forward to it, knowing that it will be far greater than what I could dream up.