Saturday, January 11, 2014

Your Child With Cerebral Palsy is Beautiful

You're exhausted, that's clear. You tell me, with a rehearsed emotional distance, the bullet points of how you came to have a child with a disability. How you found out. What the diagnosis was. The complications since. You say it with a levity that we both know you don't really feel, but what else are we supposed to do? Cry about it?

Then I look at the baby in your arms and all I can think is:

"She's beautiful."

I don't say this out loud. I actually find the sentiment welling up inside me shocking. I don't want to be one of "those" people who brushes off your woes and tells you it'll all be OK.

I remember when my son was a baby. All babies look like they have brain damage, because that's what babies are — fractured and inconsistent. So, I would have to tell people before they made even bigger asses of themselves that, no, actually, he's not going to be walking soon, but thanks. I remember that without fail these people would gather themselves together and say:

"Oh. Well, he's really cute."

He's cute? Like that's some sort of consolation prize? I have a broken baby that I will probably have to care for the rest of my life, but, hey, at least he's easy on the eyes? Because, you know, looks are all that matters. Or are you saying that at least he doesn't look disabled? God forbid, right?

I don't know why those people kept telling me that my baby was beautiful when I presented them with my harsh reality. Maybe they were just looking for an easy out.

But maybe, just maybe, they felt the same way I did tonight when I looked at your daughter.

She looks disabled. She looks like she will never walk. She looks a little out of it. Yeah, man, you know what? She looks like she will always be a burden to you in one way or another. And that sucks.

But you know what else?

She is beautiful. She is whole. She is perfect.

In time, I promise you will love her completely and you will see her for what she is instead of what she was never going to be.

I know you can't see it now, because you are in the middle of it. You can't see that your baby still has that same awe-inspiring quality inherent to every baby on the planet — a whole life ahead of her, an unimaginable potential, a unique and unknowable personhood, the limitless ability to impact the lives of people around her for better and for worse. You are exhausted and grief-stricken and frustrated. I know. I've been there. So I just want to reach out and tell you what I see:

She really is beautiful. Just as she is.



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4 comments:

  1. "She looks like she will always be a burden to you in one way or another." This part stung a little. As an almost-twenty-year-old college student with CP, sometimes I *do* feel like a burden...when my family wants to go skiing, for instance, but they don't want to leave me out. Or when I overhear my parents' whispers about my health. Feeling like a burden...that's what's most difficult about my cerebral palsy...that's worse than my own pain. It's hard to think that I've caused them worry and heartache.

    This part...this was my favorite: "You can't see that your baby still has that same awe-inspiring quality inherent to every baby on the planet — a whole life ahead of her, an unimaginable potential, a unique and unknowable personhood, the limitless ability to impact the lives of people around her for better and for worse." Simply beautiful. I wish you could share this quote with the whole entire world.

    Thanks for sharing your words with us! xoxo

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    Replies
    1. Hi K! Here's why that part stung you — you are a burden to your family sometimes. And guess what? So am I! We are all burdens to each other and that's what makes the world go around. If you didn't have CP, then you would be a burden in another way. This is where I express my feelings about this burden that I never expected to have to bear, but it would be the same if it were something else. I am learning how we have put disability in a special category by itself, but there's really no need for it to be.

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  2. You act like you are so much further along this road to acceptance but you choose to use the words "broken" and "burden" to describe a child with a disability. Never in a million years would I use words like that to describe my child. I can only imagine how you make your son feel and your actions towards his disability if this is the way you choose to write about him and other disabled children.

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  3. Lol, and thanks for that shining example of nonjudgementalism!
    I don't act like anything — like most people, my emotions are complex. In my life, my son's disability is a burden, to pretend otherwise is a little absurd considering all the extra work I have to do because of it. However, I'm also on the path to accepting it and seeing its beauty. I have moments of each and I hope that by truthfully expressing what is in my heart, I can give catharsis to others. I am truly glad that you are further along the path of acceptance than I am but it is not only children with disabilities who are in need of understanding and acceptance.

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