coming into awareness


We’re sitting on the couch. Claire reaches up her dimpled hand and touches the knot just behind her right ear, mostly hidden in her loopy white blond curls. “I have an ouchy.” “Oh baby,” I say, “that’s not an ouchy, that’s your shunt! You have that because you have Spina Bifida. Your shunt helps your head feel better.” “Oh,” she says, “I have a buckle on my head.” 

The day after she got her "buckle," aka, her shunt.
The day after she got her “buckle,” aka, her shunt.

I knew it would happen eventually, but Claire has started noticing a few of the ways in which she’s different. Actually, really, I’m sure she’s noticed before now, but she’s just now able to start talking about her differences and asking questions about them.

Most of the time, like the incident above, I just give a matter-of-fact explanation on an age-appropriate level, and we move on. She doesn’t have theological or philosophical questions about why she has a shunt bump on her head, or why she has braces, or why she uses a catheter, though I’m sure eventually she will. Maybe by then, I’ll have some philosophical answers too. But for now, and for always, Spina Bifida won’t be some big thing. It’s not a defining struggle. It’s not even something we wish away. It just is. It always has been. It’s part of Claire, and while it may affect her in big and small ways, it’s just another way of being a person in the world.

I’m glad she’s a questioner. Her mama is too. I know she’ll know soon enough that her mama doesn’t have all the answers. I hope she knows that’s just part of being a person in the world, too.

Here’s what we want her to be most aware of: she is whole and complete, just the way she is. She is beautiful, smart, charming, witty, stubborn, and strong. She can sometimes be a total pain in the neck. And we wouldn’t have her any other way. So throw those questions at us kiddo, and we’ll figure all this out together.


3 Replies to “coming into awareness”

  1. Saw your post on fb and it reminded me of our life right now. My daughter Sam just turned 6 and in the past month or so she has made comments that “I want to be normal like so and so” or ” I wish i didn’t have spina bifid a!” She is generally a happy girl, playing like all other kids. I think she is just expressing her feelings in the moment, because she had a potty accident at home and that is what brought it on last time :( The first time she said that it was like a blow to the stomach, but i came to understanding that it is a true feeling for her and i just listen and talk to her about it and she goes on her merry way. It’s not always easy but we do work thru it.


    1. Oof, I bet that was like a punch in the stomach. I have to remind myself that at times, every kid wishes something were different about them. Heck, I wish I weren’t the way I am in some ways sometimes. Then there are days when the very things I had wished I could change are the things I love most about myself. I’m such an activist at heart, especially when it comes to societal acceptance of people with disabilities, I have to remember that self acceptance is a different animal, and give the people I love room to wrestle with things. My mama heart wants Claire to love all of herself as much as I do, all the time, but I really need to remember that it’s totally human if she doesn’t.


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