One of the first symptoms of Rett Syndrome we noticed was the hand wringing. It started ever so slightly in her right hand before we even knew anything was wrong. She just started clenching it ever so slightly. A doctor told us that as long as she wasn’t doing it in her sleep, it shouldn’t be considered involuntary. As in there’s no reason to think there’s something wrong neurologically. Nothing to worry about.
I remember the first time she did it in her sleep.
Since then she’s been in 2-3 hours of occupational therapy each and every day. Even so, a year ago she could pick up a cup by herself, using both hands. 6 months ago, she could only hold it with her left hand and the only time she felt grounded was when she would hold her two favorite toys in that hand. Today, she can’t even hold those.
Her hands are in constant motion. Her right hand pulls against itself with such friction that she’s given herself skin blisters. Her left hand has started clenching now as well. We fear soon she will lose all use of that hand as well.
Her neurologist believes this is just how Rett Syndrome progresses.
We had thought there was a regression phase and then things would level off. For Maggie, it seems that we are learning that Rett Syndrome continues to progress little by little. We hadn’t even noticed that she was losing her hand use, it moved so slowly, until the day it was too difficult for her to use her hands anymore.
We are recognizing that all the hard work we put in to make sure she regains her skills and retains the ones she has been able to keep isn’t fighting off the monster quite so well. But that doesn’t mean we can stop fighting to maintain her skill level. It actually means we have to fight even harder. We have to fight harder not just in her therapies, but also in our tireless devotion to finding a cure.
A cure is scientifically possible so we aim to make sure that no parents have to watch their daughters go through this again.
Everything that Maggie wants to do is hard for her. It takes an immense amount of concentration and practice in order for her to accomplish even the most mundane of tasks.
She didn’t spontaneously start jumping on a trampoline. I had to move her legs up and down until she started doing it herself. She didn’t walk up or down stairs until months had gone by with us moving her legs and hands into the appropriate position. She can climb a rock wall (with close supervision) because we practiced every single day for an entire summer.
But some things, no matter how hard we practice, how much we try, have just been too complicated for her. Like turning a knob, lifting her arms to take off her shirt, two handed high fives and until very recently: blowing bubbles.
She’s loved bubbles forever. You know, like a kid. But blowing bubbles on her own has been impossible. She would try to eat the wand when she was very small and then over time grew disinterested in it. I don’t know why I decided to try it the other day, but try it I did. And Maggie, with very little hesitation jumped right in.
I know it seems small to people. It also may even be a little sad that I’m that excited about a 5 year old blowing a bubble. But it’s more than that. It’s years of hard work paying off. Not just by us, and Maggie, but her speech therapist Deandra and best friend/aide Shelly have been working on this for ever, too. It’s, what I can only imagine, years of frustration, wanting to blow bubbles and being unable to coordinate her muscles to do so. It’s a major accomplishment for her.
It’s one less thing that’s hard for her. And until that number is zero, I’m going to get excited about every single one she crosses off the list.