I would define Abby's good days as days when she has the most control of her body. They are not the days when she smiles or laughs the most, or days when she breaths well and moves well. They are days when she does all these things on purpose.
Its difficult for someone not familiar with Abby to distinguish between a smile and a grimace, a "funny" laugh and a hysteric laugh. We saw the first laugh that was not really a laugh with Abby when she was about two. We gave her a medication for allergies that made her act crazy. It made her laugh uncontrollably. It was funny for a few minutes, then Wes and I realized that she wasn't having fun. It wasn't a "funny" laugh, it was a "what the heck is going on and why can't I stop laughing" laugh. She had a laugh like this last night, for nearly an hour. It was funny at first, and then we went in her room and could see she wasn't in control. Abby cried in therapy today when she had to use her stomach muscles. She laughed so much last night her tummy is sore. Crazy.
I hate it when she's not in control of herself.
Losing control for Abby could mean that she can't swallow, bear weight, breath regularly, maintain eye contact, or do just about anything else. Some of it is probably related to anxiety, but all of it is related in one way or another to Rett. Isn't is always? There are times when Abby is so in control. I ask her a question and she promptly uses her eye gaze to answer. It's so wonderful. At these times she can eat, walk, and communicate better. Other times, when I give her choices, I can tell she isn't able to maintain her gaze on the symbol. She has too much going on with her breathing and grinding and patting and who knows what else. She can't stand, let alone walk.
Its frustrating for me, not knowing what to expect from her from one minute to the next. I can't imagine how frustrating it must be for her.
Have I said today that we really need a treatment or CURE for this?
I get this, all too well. Annie has that laugh too that's not funny, it's usually accompanied by "wild eyes" that dart back and forth as if to try and figure out where she is and what's going on. That not knowing what's in store is the hardest part, and it's not only day to day but minute to minute, she could have an awesome morning and a terrible afternoon. Praying for our cure too!! Hugs to you and Abby!
ReplyDeleteLast night was the first time that I am certain she did not want to laugh and yet was laughing for half an hour. She was sleeping. I moved her to her bed, and she startled awake. She then laughed even though she clearly wanted to go to sleep.
ReplyDeleteI am with you. The oscillations are painful.