This month marks four years since I had a surprise quintuple bypass at the age of 35. While that sounds scary – and it was – it ended up being the best thing that has ever happened to me.
Even though the issues were caused primarily by genetics, there were still things that needed to be corrected. I had situations and people in my life who shouldn’t have been there. There were lax approaches to diet and exercise that had to be corrected. There was also stress – major stress – over the future of my son, Lucas. It’s something I’ve never written about and, until now, I never thought I would.
For those who don’t know, my wife and I have two amazing children. Olivia is eight and reminds me of myself every day. She’s funny, whacky, and has a creative streak that we have worked so hard to encourage. I’ve watched her not only grow but exceed many expectations. We’re lucky to have her and can only imagine the great things she’ll go on to do in her life.
Lucas is five and he’s the most loving boy I’ve ever met. He runs to me for hugs in the morning and will often give me a kiss for no reason at all. We wrestle, laugh, and sometimes he’ll come behind me and just pat me on the head. It always cracks me up. His personality is so big and everyone who spends any extended time with him talks about how wonderful he is. He is one of the happiest people you’ll ever meet.
He is also autistic and, as of today, non-verbal.
That’s a hard sentence to write. At the time of my heart attack, Lucas was one and a half, but already displaying signs of delay. Aside from his lack of speech, he was late in sitting up, crawling, and walking. He hadn’t done many things that other parents were posting about their babies online. It had started to become obvious that something was off and we were starting to come to grips with that painful fact.
As is the case with a situation like ours, no professional will ever tell you something concrete. You find yourself practically begging speech teachers and physical therapists to give you a general idea of where things are heading. I kept asking how a baby who was so loving could be considered “autistic”. They’d shrug their shoulders and say, “Everyone is different” or “there are no guarantees”. It wasn’t comforting at all. In many ways, it was infuriating. I had even told some, “Look, I won’t hold you to a prediction. If you say he might talk at 3 and he doesn’t, I won’t sue you.” But still no. They held firm and told us that it was “a long road ahead.”
At the time, Lucas’s issues were the biggest deal I could have ever imagined. To me, they were catastrophic. The biggest reason - guilt. I kept beating myself up over the fact that I had brought this wonderful little boy into the world and given him so many obstacles to overcome at birth. He hadn’t asked to be born. That was our decision. All his struggles were our doing. It was a hard fact to wrap my head around. I felt I had hurt one of the people I cared the most about in the world simply by bringing him into it. Every problem he would face was because of us. It killed me inside.
It seemed that nothing could match the sadness that I felt for my son. As of November 2012, it was easily the biggest issue in my life. I couldn’t imagine living a life with that type of self-condemnation and sorrow.
Then came my out-of-nowhere surgery and suddenly I had a different point of view on almost every single aspect of my existence. My relationships changed. My diet and exercise changed. And yes, my feelings about Lucas’s struggles changed.
It’s easy to say, “I can’t live a life like this” when it’s all theoretical. It’s easy to – as I did the week he was diagnosed – spend every waking hour in a haze playing Call of Duty while wallowing in self-pity. Things seem too painful to manage and you just wish you could slink away to another dimension. Everything seemed pointless.
That changes, though, when you’re laid up in a hospital bed months later, with a giant chest scar, and a doctor telling you that you would have “dropped dead at 40” had you not caught a hidden health issue. In those days at St. Francis Hospital, I had some real George Bailey moments.
I pictured my daughter growing up without me. I imagined the emotional toll it would take on my wife, who had been dealing with all the same issues I was. I thought about Lucas and how very few people understood him the way I did. I just wanted to be home again and alive to complete my journey. I felt I needed to because people needed me and I needed them. It was the first time in my entire life that I genuinely pictured a world going on without me. It’s a scary thought that few people ever get to do in a realistic way.
Suddenly, it didn’t matter that Lucas was autistic. I stopped worrying about when he would do this or that. Timelines went out the window. Milestones were meaningless. He was on his own path and all I wanted was for us all to walk it along with him. All I wanted was him, no matter how much or how little he had to say about it. When I got home, stress had ended and I began enjoying the gifts that the universe had given me.
Four years later, he’s doing great in some areas and not so great in others. But none of that matters to me. What matters is that he’s Lucas and he loves us.
I know he does because since he was a baby, I have always said to him, “Who does daddy love?” Then I’d take his hand, pat his chest with it, and exclaim, “Me!” Today, if I ask him who daddy loves, he pats his own chest and gives me a look like, “Yeah. I know.” Sometimes he might even whisper out a “me” and I flip out. Usually it’s just him and me. I run around telling people the story like the guy with the singing frog in the Looney Toons cartoon. I wonder if he’s secretly laughing at me in his head.
We’ve all become advocates for Lucas. We don’t hide his issues from anyone. If a waitress says hello to him and he doesn’t respond, we don’t let her say, “Oh, he must be tired.” We tell her that he doesn’t speak. When he wants a toy that isn’t age appropriate, we let him have it. By encouraging every aspect of his personality, it’s helped him to excel in other areas. He surprises us every single day.
While I might never be able to teach him to speak, I can teach him to be a good person to himself and others. That’s the primary goal of every parent and, in that respect, we’re succeeding. I am in awe of his work ethic too. The things he needs to learn may seem basic to some, but he puts so much time and effort into advancing that I can’t help but be amazed. I’ve been so proud of who he is and what he has worked to do. While he might not talk or do things that many five year olds do, he has the qualities that you want in a strong person. I see that and I’m overjoyed by it. It would have been impossible for me to picture that as a possibility had I still been feeling sorry for myself.
I said at the start that I never thought I’d write about this and, to be honest, I’m still not fully sure why I am. I’ve always kept my personal life pretty private but felt this was important to share. I know that over the last 14 years, I’ve been lucky to have so many of you stop by to read my various ramblings about men in trunks tossing themselves off ladders. So hopefully, this is an opportunity to educate some people who might otherwise not be exposed to a situation like ours.
If there’s one thing I hope people can take away from this is that autism, no matter the severity, is not a death sentence for anyone – the people diagnosed or the families that love them. It’s a chance to experience the purest love on Earth. No one loves me like Lucas. He’s the realest person I know.
Thank you for allowing me to share this with you. I hope you all have a very happy holiday and remember to love those in your life. We’re all lucky to be on this planet. It’s easy to forget that. Don’t let it take a near death experience to remind you.