It was the loneliest feeling I ever had. The early days of suspecting that there might be something “wrong” with my child were fraught with silence and self-doubt. To see where we are now and realize where we came from is pretty startling.
I often wonder how different life would have been if Lucas had been my first-born child. His sister, about three years his senior, had just done all the baby stuff. We knew how long crawling, walking, and telling a knock-knock joke took to happen. My son showed up and started on a path we had been on for years already.
Things, though, weren’t happening at the same pace. He smiled and made eye contact which, to me, meant we were good to go. It was just part of the new baby checklist. We count their toes. We examine their faces. We look for awareness. When we see these things, we’re good.
We were good…kinda? Every time I thought so, a voice in my head would start to point to all the flags flapping in the wind.
Lucas was a happy baby. Although he didn’t seem as interactive as his sister was, I chalked it up to being a boy. What does that mean? No idea. Didn’t know then either. It doesn’t make sense, but I wanted to believe it. So I did.
Unfortunately, I look back and I wonder how much of my son’s early days I missed in that cloud of haze. If we turn the clock back to 2011, before my heart surgery and before he hit two, the world looked much different. The adorable videos I see of my little guy as an infant aren’t what I saw in real-time from behind the camera.
When Lucas was that age, I didn’t see him. I studied him. I watched closely and tried to talk myself out of what I was suspecting. It breaks my heart to remember it this way, but it’s true.
I would stare at his hands. Why is he clapping?
I would listen to the sounds he made. Why isn’t he repeating words?
I would look at his legs. Why can’t he keep his balance?
With such glaring evidence right before my eyes, the paranoia kicked in. Everyone around me was doing either one of two things. My brain broke it down for me and tortured me with the prospect. Either:
I was the only one who noticed this. It’s not real. I’m imagining it. One day, he will be like, “Yo. Remember when I was a baby and I couldn’t talk until late? Look at me now. I run this business.”
Everyone notices. No one is saying anything. The worst is coming.
The second choice was my go-to and, again, it breaks my heart to write it.
Why does it break my heart? Because my son ended up becoming a lot of the “worst-case scenarios” I beat myself up with. Today, he is eleven years old and has never said a conscious word. Most likely, he will require care forever. His life will have challenges. All of our lives will have challenges.
It’s a lot to wrap one’s head around. It affects families and futures on levels that few can ever truly understand. To think, as a new parent, that you are teetering on such a life-changing journey is terrifying. No one can ever deny that.
I just wish I knew that even those things, if they were to happen, would never be as bad as I worried because I have this great kid by my side. Lucas is wonderful. He and his sister are two of the reasons I get up every day and push forward to tomorrow. The love he shows me and the way he views the world are unlike anything I have ever known. My life wouldn’t be full without him.
Our kids aren’t all or nothing. My 14-year-old daughter has days when she makes me feel like the dork in gym class and others when she’s my best chum. There are times when I wonder what I would do without her. There are others when I wonder how far I could kick her. Sometimes those thoughts fluctuate within the same day. Parenting.
Lucas is the same way. If I’m being honest, though, he has more good days. There’s a sweetness to him that steers his personality and its thanks to so many good things that his perceived “disability” contributes to. They are aspects of autism that I never really thought about back when I was all doomy and gloomy.
My son hugs and kisses me, despite his age. He will quietly sit in the backseat of a car forever, if I wanted him to, without getting fussy. He will eat everything I put on his plate and ask for more until he bursts like the kid in Willie Wonka. He sleeps fairly early and, when he gets up early, he’s cool if he has his iPad. He doesn’t hit to hurt and he never makes anyone feel bad about themselves. Watching him jump for joy and beam with happiness is so infectious that it’s hard to not love the world when he’s around.
None of that went through my head back then, though. Instead, I was frowning at the Cheesecake Factory over how he was bouncing his body against the table. Everything was the end of the world. Everything was autism.
Well, everything was autism, but it absolutely wasn’t the end of the world. My kids are my world and my son is the one that the universe thought would be perfect for me. The universe got it right.