Six weeks into my pregnancy with Julian I thought I was losing him. I experienced pain and bleeding, and remember a particular moment in a hotel lobby, lowering my body very carefully into a chair so I wouldn’t jostle the fragile life inside me. I’d had two miscarriages so I knew what to look for, and though the cramping subsided, I never lost the fear of losing my son.
Every night I took walks in the neighborhood with my neurotic dog, a Cairn Terrier who fears trash cans and cameras. At least once a week I noticed a particular streetlamp at the corner of our lot because it flickered off and on. It flickered throughout my pregnancy, from June to the end of March, 2007. Sometimes the light would burn out completely as I watched, and only as I watched.
I took this as an ominous sign, the slow or rapid flickering of the light, the mad flash before it burned out completely. I’d made it eight months into the pregnancy but now feared my baby would be stillborn.
On March 28th, 2007, Julian made his appearance. The obstetrician mentioned that the cord was wrapped around his neck “three times, tight.” But there were no issues, and his apgar scores were both 9. He was okay, or so everyone thought.
I wonder now if that early spotting and cramping might have been a warning that something was wrong, if maybe Julian was only one gene duplication or deletion away from being terminated by his own mother’s body. I can’t know this, and now it doesn’t really matter, just as it doesn’t matter that the cord was wrapped around his neck, that I was forty-two and his father was forty, or that the doctor used Cytotec to soften my cervix (the OB/GYN explained later that the drug is one of many possible suspects in the autism mystery). There are a million and one theories about what causes or triggers autism. They matter in general, but not specifically to us now.
If I’d known back in the summer of 2006 that I would give birth to a son with autism, would I have been so careful not to jostle the life inside me?
When I try to imagine Julian without autism, I do see someone who looks and sounds like him, but they’re not him. There’s only one, and he’s my son. I couldn’t love another more or better. My life would be no easier, just a different kind of hard. Challenges are guaranteed. We just don’t get to choose which ones we’re given.
I do get frustrated sometimes, like all mothers. I get frustrated when my kids don’t listen to me, when they create more than their fair share of a mess, when they talk back or refuse to do homework, take a bath, whatever. The usual. But even as the frustration bubbles up, I feel gratitude. I’m grateful for how normal my frustrations are, that autism didn’t get in the way of typical childhood drama.
I do get frustrated with how autism gets in the way of his receptive and expressive communication, but I’m also grateful that his communication deficit has made me a better communicator. I’m more patient. I slow down, carefully choose the right words, rearrange or exchange words to help him understand. Autism has given me an infinite number of ways to love him better, to show him the depth and breadth of my love. Even the simple act of talking is a profound act of love if I have to put every ounce of my being into saying the simplest things.
Do I wish Julian were cured? I hesitate to say Yes, but No would be a lie. I love progress. Every step Julian makes toward a better life makes me feel proud, elated and relieved. But I’m not looking for an endpoint. Our children never finish becoming, and neither do we. We just want progress, to witness the growing “up” and reaching whatever potential is possible. With Julian, I not only look at where he’s going, what he’s becoming, but where we came from.
I thought I might lose him from the beginning. Then after the autism diagnosis, I did lose him. He died, or at least the idea of him, my hopes for him, died.
Now every step of progress, every perfect sentence or 100% on a spelling test, I get my son back. The part of him that died is resurrected, again and again. And that euphoria I feel every time is worth the pain of the autism diagnosis, worth the fear of losing my child.
He’s reborn every time he takes another step.