Tuesday, August 17, 2010

Trusting, Step 1

I just wanted to go to bed. I wanted to go to bed, but there was Anna, telling me that she couldn't find Lamby, even though I gave her Lamby when I tucked her in. As I searched yet again Ethan looked on with curious big eyes from his crib. I noticed (darn!) that his diaper was off again. I thought we had kicked that habit. Then I heard him saying, "Poop crib." He meant pee, but I got the point. The sheets were wet. Darn. And he had pushed the crib across the room so he could reach the drawers of Anna's bureau and open and close them. He'd also pulled down the cheap Wal-Mart shade and made it rip more than it was already ripped.

"RRRRrrrrghhh," I growled, nearly literally, furiously snapping on the light and looking for fresh sheets. I plopped Ethan on the bed with Anna and began throwing all of the pee-scented stuff in a pile. All I could think was I thought he was finally done with stripping off his diaper and I'm sick of the drawer opening and closing and will we ever get him in a bed without a tent and what would happen if we tried it? and really, most of all, it was you mean, we always have to deal with this? This isn't going to go away, is it? Is it? All of this while I put on the new sheets and gathered up the old.

I always hear these stories about naive people. They're the types who had children diagnosed with autism and thought if they just worked really hard, they could make it all go away. I heard a woman talking on the radio a few months ago. "At first, I thought he would be cured by the time he entered kindergarten," she was saying. "Yet here we are now, and he's eight and still non-verbal."

I hear these stories and I wish I were one of those people. But because I've seen autism in the form of my brother and of many, many other young adults when he was at Boston Higashi School, I have a picture in my head that I can't shake. I don't want to say it's a bad picture...in many ways it's a beautiful picture, full of hope, but one can only see it that way if one is able to let go of the usual dreams.

That is a process, of course, and one I'm not sure how to approach. My mind is often a swirling mixture of pessimism and faith, hope and realism. I don't want to let him down by not dreaming big enough. I don't want to let myself down by setting my sights high for him and end up bitterly disappointed. I don't want to leave my faith out of the equation and forget the vital part that faith, prayer, and trust play...but simultaneously don't want to view my belief in God as some sort of rabbit's foot for delivering Ethan from autism ("if I just believe hard enough, he'll be healed, like those healings in the Gospels, your faith has made you well...").

This is what's simmering below the surface, when I'm losing my temper over relatively small things and fighting off hot tears.

While I put the new sheets on and got the mattress back in the crib, I kept thinking about a quote from an article I'd read about a year ago. A woman had mentioned something a wise, older Christian friend had said to her about God and trust. "What it all comes down to, really," she'd said, "is whether or not we believe God has our best interests at heart."

The line kept running though my head, as Anna and Ethan began jumping on the bed even though it was nearly nine o'clock.

Do I believe God has my best interests at heart?

Even if Ethan never overcomes autism? Even if some of our original dreams for him have to be exchanged for different ones? Even if it seems as if no one else has around me has to face this kind of heartache and it's just not fair? Even if?

Answering yes is the first step to lifting those burdens off my back. Maybe it's the first step to being able to modify my dreams for him without feeling as if my heart is ripping out...yet still have dreams, to still very much believe for him.

Anna and Ethan were bouncing, laughing. She'd drop and plop her face into the mattress, and he'd do the same. Again and again and again. Brother and sister, playing as they don't do all that often. Ethan, imitating perfectly, as he could not do even just six months ago.

After a few minutes I calmed them down and tucked them in and then yeah, I cried for a little bit. But the words kept coming back to me: Does God have my best interests, Ethan's best interests, at heart? There was a sweet peace there, because despite all of my other raging thoughts, in the months since Ethan was diagnosed I am somehow always able to answer Yes. And mean it.

Now comes the trusting part.

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