Sunday, September 21, 2014


I read this article by a father of a son with special needs yesterday. I have read a similar one in the past. Take a moment to read it:

It raises a good point that most people might never even think about, the statement, "as long as it's healthy", but then what if "it" isn't? Life will end? You won't love your baby the same? I realize that it's a statement that is just part of small talk. It's what people say when they are expecting a baby, but again I ask, "What if it isn't?" I think it's a stupid thing to say, and I'm sure I said it plenty of times, without a second thought. 

What I have been having trouble sorting out in my brain is the idea that Lucy is not healthy. Technically, by definition, I guess she's not. Lu can't talk with her mouth, she cannot walk independently, she cannot use her hands functionally, she has to have a feeding tube because her mouth isn't capable of efficiently eating enough food to nourish her body, she holds her breath, grinds her teeth, has low muscle tone, tremors, wears braces on her legs, has chronic constipation, gas, and reflux, and takes a pile of medicine daily. AND, now we are worried about seizures again because Lu has started having almost daily episodes of stiff arms, wide confused eyes with dilated pupils, pale splotchy face, and uncontrollable shaking. In the past ten days she has had 1-2 episodes 8 out of the 10 days. We are going in for yet another extended EEG on September 30th to determine what is happening and if seizure medication is needed. So, just one more point against "health" I guess. 

In my mind, I have such a clear separation of who Lucy is and what Rett Syndrome is, that it guess I don't consider her to be "unhealthy". And when I hear people talking about their relief at how healthy their baby or child is, how they feel like they have won a grand prize, I immediately feel indignant. Like, just because Lucy is not "healthy", I didn't win a prize? Like I don't think Lucy is the most amazing, beautiful, incredible child we ever could've created because she was born "unhealthy"? Once, when we were at the training to learn the PODD, another mother asked me in the restroom if I was a mother of a child with Rett and I said yes, and she said, "Oh I'm sorry." I get why she said it, I'm sorry too that Lucy was born with this horrible, debilitating condition, but I have never, ever once been sorry that I am Lucy's mother and as soon as she said it, I felt like she also socked me in the gut.  I am sad all of the time that Lucy's life has to be so hard for her and, that there is so much that just isn't possible for us as a family, but I never feel like I didn't win just as big as every other mother I meet. 

Lucy is Lucy. She is a whole person whose mind, and heart are 100% healthy. Rett Syndrome is a condition that makes her body not work, and in essence makes her "unhealthy". I've said this before, but I have been thinking about it a lot, because Rett Syndrome is not all she is, it is not who she is, she just has it.  It's an obstacle that we have to overcome each day. But in spite of it, her person, her essence, all that she is comes shining through all the time. That's why I guess I don't think of her as "unhealthy" on a regular basis, I just think of her as Lucy; my daughter who loves to cuddle, and play babies and Mr. Potato Heads, and read all kinds of books. My daughter who loves to swing, and ride her bike, and who especially loves to swim. My daughter who loves cheese, and Mulan, and the Magic Treehouse books that she and her Daddy have been reading.  My daughter, the artist:


The author:
(Lu used the alphabet on her Tobii to "write" this.)

The beauty:

It just so happens that she also has Rett Syndrome. 

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