09 July 2012

Being Real

I am fierce, and I am fragile.

It seems like an odd combination, but I'm guessing most of the moms out there will get it. Especially my tribemates, the women who get it because they live it, too. It's that finely honed instinct to protect, whether it's the quick hand on a shoulder to keep Em from charging ahead in line (likely because she didn't notice there was a line) or the lightning-fast explanation that leaps to my tongue when she does something that proves her Other, and the stares and whispers begin.

I want everyone to get it.

Like at the community pool last week, when her gleeful trip down the slide she's nearly too big for paused abruptly, simply so she could stare at her surroundings and beam. Pure delight. It was a simple moment, and it was magic for her. But there was a line, and she was holding it up. I watched another mom roll her eyes and huff, and I wanted to ask her what schedule my daughter's joy was disrupting. I don't know that explaining to her that Emma has autism would have smoothed things out -- and in this situation, I decided that someone who'd show visible annoyance with a happy child over a five-second delay wasn't worthy of an explanation. I think we could all benefit from an occasional joy break.

I can absolutely admit that my skin is too thin when it comes to my girl. I can't shake the desire to police her world and keep everything and everyone in it from hurting her. It's an impossible goal, and this skin isn't likely to thicken with time. I'll own up to getting stung by conversations that have nothing to do with Emma, nothing to do with autism -- but there's something in them that hits home, something in a phrase that just hits me where it hurts. (For example -- use "retarded" in casual speech, and I won't call you evil and refuse to speak to you, but I will be hoping your vocabulary improves to the point where you can find a much better word. I'll even chip in for the thesaurus.)

Emma was a few months shy of her fifth birthday when I stumbled across a thread on Facebook, a 'friend' posting excitedly about their child being potty-trained at age 3. The mom joked that she was relieved that this huge milestone had been achieved before her child started school. A commenter chimed in: "No joke, can you imagine having a child be 5 and NOT potty-trained?"

Neither of those people know Emma, and neither of them were attempting to slight her. I wish that prevented it from stinging. But just like neither of those moms couldn't imagine having a child with developmental delays, I can't imagine otherwise.

Emma is all I know, and all I want to know.

It's kind of like apples and oranges, I guess. No peeling required for an apple -- just bite in and enjoy. For oranges, you need to put in a little more effort. Work at the peel, get your hands messy, all the while knowing that the end result is going to taste nothing like an apple. And so what? Oranges are their own thing, with their own appeal. Just like I've never bitten into one secretly wishing it was an apple, I don't wish I had your child when they hit a milestone or do something amazing. I just wish the best for mine, knowing that I will celebrate just as much when we get there, in our own time.

Speaking of milestones, we hit that huge one ourselves recently. Instead of diapers, now there's a four-foot blur streaking by me, cheerfully calling out, "Bathroom!" and "Wipe me!" and "Toilet paper!"

I'm going to go home tonight and read The Velveteen Rabbit to my daughter, who will never be ugly to me.

"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. It doesn't happen all at once. You become. It takes a long time. That's why it doesn't happen to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

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