A Body Bound by a Brain #1



The hands of Rett syndrome

When people see a young child with Rett syndrome, parents often get “they look normal.” It’s almost like a question, as if questioning the parent that they’re child is actually disabled. It’s a weird sensation in that moment-there’s nothing more that you want than for your child to be “normal” but then their comment has put you on the defensive, makes you angry, it truly makes you want to scream at them, “Yeah?! Well do YOU EVEN KNOW how cute it was when she would say “dough” for go, or mama. DO YOU KNOW how long it’s been since she said THAT, THAT’s all I want to hear, mama, is that too much to ask?? But you know if you start, you’ll look like a raving maniac, so you just turn away, hug your baby closer, and the tears that slide down their cheek are yours.


Because really, your child is far from “normal” any more, all because of one tiny mutation on one stupid gene, something that can’t be seen with the naked eye, that’s how stupidly small it is and yet it’s like the “Road Less Traveled” which ‘made all the difference’, but not in such a good way as that poem implies. Their brain took the road less traveled and it did make all the difference…

It took away their hand use. And that is the symptom I’ll talk about today. No one, unless they’ve been through it, can comprehend watching the loss of hand skills, leaving fingers and hands to be entwined, sometimes always but during sleep. For Katelin, her hand wringing actually began in her feet. Her feet would turn one over the other when sitting and her legs were hanging down. It often took two people to put socks and shoes on, it just wouldn’t stop. And then one day it did and now she was rubbing her left wrist. She rubbed it raw, until it bled. I jerry-rigged a cover by making a wrist sock, like a fingerless glove, and secured it with a youth wrist band. Slowly over the years, her right hand moved downward and now her hand movement is her right hand sliding up and down over her left.

Some children are left with hands permanently clasped, some children are constantly mouthing their hand/s, some flap them, some squeeze them together then yank them apart, over and over. All I know is that their hands are bound by their brain to do this and it’s heart breaking.

There are so many things that are impacted by the loss of hand use that I could list them all day. Can’t feed themselves, can’t hold a cup, can’t color, can’t write, can’t scratch and itch, can’t hug on and on…

So, for those of you who may be reading this and wonder what’s the big deal, so they can’t use their hands… have someone tape your hands together, around the fingers and everything. Now, go get dressed. (as a side note, you can’t talk either). Or, try choosing something on TV, or drinking your coffee. Try telling someone you even WANT coffee. Think about living that way for an hour, a day, a year, a lifetime. I wonder how long before your freaking out and telling someone, anyone to cut that tape off.

Well, that’s what we’re waiting for…the treatment that will unbind their hands and set them free.

This entry was posted in Communication, cure, fund-raising for rett syndrome, hand clasping in Rett syndrome, hope, Rett Research, Rett Syndrome, Rett syndrome Awareness, Talking, Trail to a Texas Trial and tagged , , , , , . Bookmark the permalink.

One Response to A Body Bound by a Brain #1

  1. S diamond says:

    I think of my sister often and her beautiful family

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