After getting married and having kids, every once in awhile I’d think of my brother’s situation and wonder: What would you do if you had a child with autism? With Anna I was able to keep this fear at bay very quickly. Girls are much less likely to have autism, and from the start she was a very social baby who was usually ahead on her milestones. When I got pregnant again and we decided not to find out what we were having, the little whisper was back. It was an undercurrent that ran through the pregnancy. What if something’s wrong with the baby? What if something’s wrong with the baby? At night I’d wake up in a sweat and beg and plead with God.
Then Ethan was born a few weeks early and had jaundice. He was a very sleepy baby who seemed less alert and less social from the start. The drumbeat pounding of my heart grew louder. On mornings when Anna was in preschool the thoughts would sometime consume me. When Ethan was four months old and the guy at the Target portrait studio couldn’t get him to smile I drove home crying and shaking. A month later I took him to the pediatrician. She couldn’t find anything off, but suggested I see someone for anxiety. No kidding, I thought ruefully.
I spent the next six months scouring the What to Expect milestones and trying to engage Ethan. Some days everything would be fine and other days the fear would creep back. When Ethan was about 15 months old I did a freelance video shoot at a home with a little girl who was several months younger than him. I watched the way she tried to reach out and communicate. She seemed so different than Ethan, and while I told myself it was because she was a girl, something didn’t sit right with me. Some nights I’d go into his room and watch him sleep and silently pray, tears slipping down my cheeks…Please God, please God…
One April day when he was 16 months old, I knew. My mom was watching Ethan while I went out somewhere. I went to say goodbye and he just looked at me, or maybe through me. He didn’t care that I was leaving. He showed complete indifference, and I knew.
Ethan had autism.
I got on the highway and drove and began crying so hard I could barely breathe. I don’t know how I could see the road but somehow I drove for awhile and then pulled into a parking lot and called the Christian counselor I’d finally started seeing for my anxiety. A month later, Ethan was evaluated in the home by early intervention. It would take another four months to get an official diagnosis.
As we began Ethan’s therapy appointments and adjusted to a different way of life, two opposing thoughts kept churning around in my mind. One was the familiar Why? Why did the thing I fear come upon me, upon my son? But the other was more freeing: This happened, and we’re still here. We’re making it. This may sound rather silly, but then again, I think it’s not. There was a part of me that somehow had thought that by fearing something, I would actually prevent it from happening. Now I knew that not to be true.
A lot of what drives fear is really about control. People had told me all of my life to let go and let God take care of things, but I didn’t want to do that. I didn’t want to because I didn’t trust God. He allowed bad things to happen. In more recent years, it seemed every time I'd try to do that, something would remind me why I couldn't trust. Remember Lucy, my mind liked to whisper.
Lucy was a woman who’d gone to our church right around 9/11. She had two boys and had drifted far from God but had come back. She was getting her life back on track when she accidentally overdosed on a wrong combination of medications. She died the same day the plane crashed in New York City a few months after Sept. 11. Her boys went back to their father, a man who I’d heard was far from a model parent, and I added that to my list of things wrong with this world and reasons God is not good.
That mantra ran somewhere in the back of my mind, but as we adjusted to Ethan’s diagnosis something peculiar was happening. In the midst of a terrible time as we tried to readjust our vision of the way we thought life would be, I would have these amazing moments of just knowing God was with me. Maybe it would be an autism blogger I’d find online or a therapist who would come our way; an encouragement from a friend or a Bible verse that would just jump off the page as if it’d been written for me alone. I’d always heard these clichés about God carrying people through tough times, but they’d been nothing more than that, words. I hadn’t had the experience. Something inside me started to chip away. A wall was beginning to come down.
As we looked ahead at Ethan’s future, I truly knew that we had no way of knowing what was going to happen or where he’d be in one year, five years, or 20 years. No amount of worry was going to change that. I was going to have to learn to live life knowing some things were out of control. That’s when I started my blog. I knew right away what the title would be. Open Up and Let Go: to open my arms and let go of everything I’d held so close to me, thinking it was mine, when really it was not at all.
To be continued...