Friday, February 22, 2013


Here are three things that Lucy said this week:

To me: "I like this, lucky, amazing, mom, dad, help."
"I don't like this, sad, help, thank you"

To Chad: "I like this, great, lucky, why, help, I love you."

To the first statement, I asked her if she feels lucky to have us to help her; she nodded yes. To the second statement I asked if it makes her sad to need help; she nodded yes and was crying a little bit. To the third, I later asker if she wanted to know why we needed to help her; she nodded yes.

She's not yet three, so at this point I am simply flabbergasted at how, not only can she can use her book to tell us how she feels, but also that she is feeling these things. This is going to sound maybe conceited, or braggy, but I often feel like Lucy is a little wise beyond her years. Chad says he thinks the same thing.

So, as I overruled the sound of my heart breaking in my chest, I answered her question. I told her we have to help her because she has Rett Syndrome. I told her I know she has heard us talk about it, but maybe she doesn't know what we mean. I told her there are lots of other girls just like her and some can walk, and some can't, and we are always going to keep working on her learning how to. And I told her that it was something that just happened, for no reason. I told her that we love to help her, but it makes us sad sometimes too.

I didn't know what to say! I still don't know what else I am going to say as she asks more questions. What Chad and I do know, though is that we will always tell her the truth, to the extent which we think she will understand. Which, leads me to yesterday. We drove an hour and a half away to Milton, and picked up Lucy's new Otto Bock Kimba Spring Tilt-in-space...wheelchair. When the pt came to measure her and assess what her needs were for a mobility system, he called it an "adaptive stroller". The Otto Bock manual, however, calls it a pediatric wheelchair, it looks like a child's wheelchair, and in the equipment section of the PODD, there is a picture of a wheelchair. We are just going to call it what it is...a wheelchair. The word is sour in my mouth, but it shouldn't be. "Adaptive stroller" is a euphemism, and really aren't euphemisms just cowardly ways of not saying the truth. Lucy can't walk. It's not a secret to anyone, including her, and to just go ahead and say "wheelchair" simplifies everything. People know what a wheelchair is, it's just one word so Lu isn't confused, and it's just easier for everyone. Maybe it's not easier emotionally, but what is at this point? I smiled and cheered and said positive things as they fitted the wheelchair for her yesterday, but I also wanted to cry and scream, and maybe puke a little bit...I think we are getting good at keeping that at bay when necessary.

But guess what, Lu was tickled pink with her new ride! She looked comfortable and happy and got to eat lunch in it instead of having to get squeezed into a stupid wooden high chair that provides her with no support, and she slides out of constantly. That's all that matters.

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