20 August 2012

walk on

Go ahead, release your fears / Stand up and be counted / Don't be ashamed to cry - Des'ree, "You Gotta Be"

Maybe the first thing I need to say is that this life is not a tragedy. Mine isn't, and Emma's certainly isn't.

If I said that my daughter's diagnosis with autism had ruined my life, I'd be lying. Changed it, certainly, but this is the path we're walking, and so forward we go.

I'm thankful for the diagnosis. I want to know. Knowing not only gives Em access to services, but it gives me a lens through which to see her, to try and start understanding.

It's not the whole picture; it's a word.

She has autism. She is autistic. It's not a shameful secret, and it's not an excuse. It just is. It doesn't hurt me to say that out loud.

What hurts me is when her autism hurts her. When her pain is so big that she doesn't have words, and she forms a tiny fist, driving it into her mouth until her lips are bleeding. It hurts me that's the only way she can tell me she hurts.

I've read a lot recently about the damage that parents of autistic children do, in some eyes, by saying that it's hard, by admitting that sometimes they hurt. And while I agree that the language we use to say that is absolutely important, I refuse to agree that saying it at all does damage to Emma, or that it means somehow I love her less.

It's not a tragedy, and it's not a cake walk. It just is.

The inimitable Jess at A Diary of a Mom wrote on this very topic -- "Our children struggle in ways that no child ever should. At times I swear that if my girl could climb out of her own skin she would. No matter how much incredible progress she's made, no matter how hard everyone in her world works to try to help smooth her path, she still has to fight mightily every God-damned day."

Call me crazy, but I think those stories have to be told. The services, resources and activities in our community are growing, and they should. And that growth needs to continue. For people to help, they have to know how to help, and they want to know why.

The why is that sweet, sweet face that greets me with a smile in the mornings, the one who clambered onto my lap tonight before the sitter had even left, throwing her arms around my neck. The why is my girl, whose spirit is indomitable, whose self-inflicted bloody lip and tear-filled eyes couldn't keep her from asking for "tickle!"

Most of the time, she runs down this path at a speed that leaves me breathless, that ever-present smile making it easy for me to go along with her. Sometimes she trips, and we pause, and I take that moment to consider how long this journey is. Sometimes I get tired, and sometimes I snap at cashiers when they ask my daughter, "Can't you talk, honey?" Sometimes it's hard, and some days it's really hard. And I won't feel guilty for saying it or for feeling it, because I will always love her enough to keep going. Because it will always be worth it to keep going.

It just is.

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