This is an updated post from two years ago.
Fact: Abnormal hand movements. As the disease progresses, children with Rett syndrome typically develop their own particular hand patterns, which may include hand wringing, squeezing, clapping, tapping or rubbing.(Taken from the Mayo Clinic website)
I have always been fascinated by hands. Hands aren’t just tools of our bodies, they’re what we reach out with, they are what we create with, talk with, write with, eat with, but most of all touch with. When I think of hands, I marvel at the wonder of evolution, the incredible hand of Nature, that enables me to type out this blog post.
Think about how much you use your hands in just one hour. Now, try to imagine that hour without being able to use your hands. No holding your coffee cup, turning the page of the Sunday paper, answering emails, feeding yourself, combing your hair, dressing yourself, going to the bathroom by yourself. Now imagine a year. 5 years. 60 years. That’s the life of a Rett child.
Many children never separate their hands from the other while awake, only when they are sleeping do their parents see a child at peace, their hands finally quiet for the day. Some children have to wear arm braces to keep their hands away from their mouths, a common symptom, just to have the chance to be able to hold something or allow hand over hand help. Imagine living YOUR life that way-needing someone else to take your hand to do everything. Can anyone who hasn’t been in this position appreciate the amount of time that takes? How many countless hours over a life-time someone else devotes to you being able to do anything, anything at all? That’s what Rett parents do. Every day.
Katelin is so fortunate to be able to use her hands, but that wasn’t always so. When she was younger, a lifetime of no hand use was what I was expecting. I couldn’t be more grateful that that didn’t come to pass, but she still needs help in every facet of her life. There are still things her hands can’t or can’t always do. For me, one of the hardest things to come to terms with was that she would never write. Never ever be able to put on paper a single thought. This makes me incredibly sad. She can use her Tobii at times to say preprogrammed things. But these are my thoughts she uses, I put them there, and while it’s wonderful, it’s not the same.
Hands, to me, are poetry in motion. If I had to choose between blindness, deafness or the loss of my hands, I would choose the other two any day of the week. Hands hold babies, wipe away tears, hug. I hope for a cure every day, so that our children are given the miracle of life with hands, hands that reach out, hold on, touch, clap in joy instead of neurological deficit and maybe create masterpieces in art and literature.
*Since the original writing of this post, and thanks to the 2016 Rett Conference, Katelin has begun to write using an “alternate pencil” where she chooses letters or words or pictures. It is a slow process, but there has been some success. We use flip books developed by Susan Norwell and Rett University and many of the children are learning to write with Tobii’s and other forms of “alternative pencils”. I’m very proud of Katelin that she is able to read and understands the concept of writing.
But, that doesn’t mean I still don’t dream of her holding a real pencil one day or being able to tap a keyboard and write, just write away, write every thought she can. As parents we have to let go of so many dreams, so many you can’t even count them, and I’m not ashamed to admit, I can’t let go of this dream. Because I know I don’t have to. I KNOW with every fiber of my being that it is a possibility, one that is so close I can almost reach it with my fingertips and place it in her hands. I know because once, during the NNZ trial she drew a circle, a real circle, all by herself. That’s an “O” you know.
But, I also know that time is still not here. And we will continue working as we are so she is super ready when it all comes together and she can take off running. We have to not give up, continue to educate and encourage and prepare our children for the day they are set free, whether it’s through assistive technology or a cure.
Until then and forever, Katelin’s hands captivate me for what they can and cannot do, but what they surely do is hold my heart.