Monday, July 16, 2012

With her own two hands...

I will not deny that sometimes I use my blog to express feelings to my friends and I can do so in a calm, thoughtful, and constructive way. This is one of those times. Lucy is constantly clapping her hands, flicking her fingers, and some times doing a little wringing. This is Rett Syndrome. A quote from the Rett Syndrome Handbook, provided to us by the International Rett Syndrome Foundation is as follows:

"It is important to recognize that she is not causing the repetitive hand movements to happen. They are happening to her. Even in situations where she wants to, she is usually unable to break up these movements on her own."

Often times, people that do and do not know about Rett Syndrome will make comments such as, "Oh yay she's clapping!" or "Oh, she's playing patty cake! Good job Lucy!" But, as is stated above, and is a fact, she is not doing either of those things, or anything meaningful at all. It is just happening, and I am fairly sure that Lucy knows that very well...better than anyone else in fact.

I would challenge anyone to take a full minute and continuously clap their hands over and over again; that is Lucy's waking hours, every day, almost every minute unless her hands can briefly
distracted by something else, but afterward, it's always right back to that. Regardless of who makes the comment, it feels like somebody has socked me in the gut. The difference comes from people who do not know she is not playing patty cake and the people who do. I have spent a lot of time thinking about why it upsets me so much and how I can express myself without seeming like I am trying to tell people what to do and I have come up with two main points I would like to share so that people who love and care about Lucy might look at her hand movements in a different way, and change the way they acknowledge them.

First of all, as Lucy's family and friends I believe it is our job to let her know that she can be who she is, and how she is 100% of the time for all of her life. I feel that pretending this very obvious aspect of her disability is something more meaningful or more "cheerful" is not fair to her for several reasons. First and foremost because she knows it is not meaningful or cheerful and if we as her loved ones insist on pretending that it is, then she will eventually come to feel like it is wrong or bad, or embarrassing...but she can't stop it, so she would just continue to feel that way. If somebody was having a heart attack in front of us, we wouldn't pretend they were acting out a scene in a play just because that would be easier to handle. It is important to "call a spade a spade" as the saying goes, and move on.

I feel like the motivation for pretending that her uncontrolled hand movements are something else might stem from various reasons:

1. It's sad.
2. It's so obvious and people just don't know what to say.
3. People want to hide from Rett Syndrome, avoid it, pretend it isn't the bastard that it is.
4. Maybe they think it makes Lucy feel better.
5. Maybe they think it makes me and Chad feel better.

But here's the thing, little two year old Lucy never gets to hide from it, never gets to pretend it's something that it's not, and never gets a break from all of the symptoms. And so as adults, and people who love her, I don't feel that it is fair to her that anyone else should get to hide from it either. It is freaking sad, but pretending doesn't make anyone feel better. If she is brave enough to soldier on every day; learning, and working, and struggling, then we all need to be right there with her, accepting Rett Syndrome for what it is and facing that. The reality of this situation is that how we all feel about Rett Syndrome and the sad things that go along with it is not really relevant. It's not about us. It's about Lu and what she needs and what is best for her. For example, the other day, the swallow specialist that we are going to see in New York said to go back to a nipple with her so that she will maintain her "suck/swallow" ability because she has always lost a ton of liquids and is now losing food. This made Chad and I sad, but it does not matter. What matters is that I want Lu to be able to eat and drink for as long as possible! Forever hopefully, and if we have to use a bottle to accomplish that, then we do, and our feelings cannot get in the way of that. We have to just suck it up.

And I will tell you this, I spend every day watching those hands go and go and go, and there is not one second that passes when I watch them that I do not want to scream and cry. I never look at them with anything less than rage, and confusion, and without my heart breaking all over again. But I also look past them, to my beautiful daughter who smiles in spite of them, which is why I am able to shoulder that rage, tuck it away, and get on with business...because that's how she does it.

My request is just that people say nothing at all. They are her hands. They are in constant motion. Yes it is awkward, and obvious, and sometimes tiring just to watch, but we all know that, so let's just step right around them, and let Lucy be Lucy. She never has been able to play patty cake, she probably never will be able to, but who cares! She rocks in other ways, while learning more and more ways to rock each day!


  1. Julie -I can relate to your thoughts about Lu's clapping. Akin to the hand flapping, as well as other movements that often come with autism. Maya had some issues with that when she was younger but as she grew, many of those faded away for her. Kurtis still does a good bit of hand flapping though not as much for him either as he did too when he was smaller. Honestly, now I don't remember if the therapists the kids have had did anything to help those to ease up or if it was just more of a natural transition for them. Ans yes, it is sad because we realize that actions like this, that society as a whole, regards as abnormal and then, as the children grow, begin school, more entry into the "regular" world, this and often many other marker things are such that other children then pick on kids for those factors. Would that all kids could learn to treat each other with kindness and not bully in any way, shape or form! Maybe some day.... -one can hope, anyway.

  2. Very well written and communicated. I hope that those that need to hear this read it and really "hear" it. I too feel very frustrated at times when people very close to me dismiss or downplay what we struggle with as a family as much of it is out of our control. I think you are doing the right thing in insisting that people confront the reality of the situation and deal with're right-it will only make it worse for Lucy and you and Chad if everyone pretends it's not happening or it's something other than it is. I know you hate Clarion, but sometimes I wish you still lived 5 minutes away-I miss you!