Everything I Feared Happened…And We’re Still Happy

My son was already showing major delays when I had my surprise quintuple bypass. Although not even two, Lucas’s issues were on display and all I could think about.

The last picture I had taken on my phone was of him, sitting at the table, hammering wooden blocks with a toy mallet. Most kids his age could already use toys like that. Lucas, however, struggled to hold it in his hand. I thought the worry would kill me.

Turns out it was my heart that was going to. I found that out the next day.

My health had always been fine. I was young. I was active. I was stunned to learn that random shakes and pains I had been writing off were heart attacks. Had I not come in to see what was up, triggering an immediate surgery, I’d have been “one of those guys who drops dead at 40” according to the doctor.

I’ve made it past 40. But I am fully conscious that my story could have ended there.

That boy with that wooden hammer wouldn’t have that magic moment I thought I needed in order to survive back in 2012. The morning that he wakes up and says, “Hi, Dad!” – as so many people assured me would happen, didn’t. He’s grown exactly into the version of life I feared in that moment.

When I snapped that picture from across the dining room table, I had a knot in my stomach. I saw basic skills that weren’t reached yet. It’s a feeling that, if I’m being honest, sometimes creeps back into me.

Yes, Lucas doesn’t talk, but there was so much else to teach. Turning doorknobs, brushing teeth, drying off from a shower, the list is so much deeper than anyone realizes. It’s deeper than I often realize.

It’s the one aspect of parenting a boy with profound autism that hits the hardest. For all our achievements, I’ll always worry that I’m failing him.

This worry is common for parents across-the-board. You don’t need a kid on the spectrum to think about whether you’re doing enough to help them. You just need children you love and a desire to make them the best they can be.

And my son is the best he can be.

I know that in my heart. Whatever he is capable of doing, he’s working towards. I am proud of all he’s become.

And in many ways, we ended up exactly where I was terrified we would. This was the imagined “worst-case-scenario”. It was a checklist of fears.

He doesn’t speak. He struggles with life skills. He goes to a special school. He will need care for the rest of his life.

And yet, we’re happy.

I’m talking genuine happiness. We’re not putting on a brave face or trying to fool ourselves. We’re honestly happy.

Sometimes people will say something like, “I don’t know how you do it.” I usually thank them and move on. In reality, there’s a real answer.

You just do. What’s the alternative? You face a scary future with a toddler who might have severe autism. You get bad news. You see red flags. You imagine the end of the world. You envision an impossible future.

Then you wake up the next day.

Then the next.

And it keeps going until the impossible not only becomes possible, but routine.

The person you pictured in your mind at two is now standing in front of you at nine. He has all the delays you imagined then. Only now, he has a fully formed personality. He’s not a stranger in a dream. He’s my son, in my house, smiling at me.

Soon, acceptance branches out. Not only are the tasks becoming a part of life, but so is Lucas. The boy who was once challenging to bring anywhere is capable of going everywhere.

I stopped stringently scheduling things around him. I don’t force him to go to the DMV with me. But I know that if I needed to, he could come.

In fact, there are some outings that I purposely take him on. He’s a part of my life, just like his sister.

It really comes down to one realization. The life I was so scared to have was the same one I was scared to lose that day I had my heart rebuilt. Laying there, on the table, I desperately wanted to come back and live another day. That was shocking for me at a time when I lived in fear of what the next day would bring.

Spoiler alert: it brought all I worried it would…and I couldn’t be happier.

Life is about the people you love, not the things you need them to do. I love my children, no matter how many words they say or how self-sufficient they are. I’m lucky to be here to watch them grow. I’m just grateful I get to be here with them.

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