What Will The World Say About My Special Needs Child?

2012 was a big year for me. It was the one that changed my life.

While that was the time that my just-over-one-year-old son Lucas was starting to show serious delays and easing into home services, it was also the year that I got my surprise quintuple bypass. I was in my mid-30s and considered “healthy” by doctors when a sudden medical episode and yeah-why-not visit to a walk-in doctor landed me on an operating table.

I felt more vulnerable during that time period than I ever have. Helpless and immobile, I remember laying on a hospital bed in the ICU. The lights were dim, but on. There were people running all around with buttons beeping and machines dinging. This went on all day and night, yet somehow, I slept.

One night…or morning…or whatever, I was laying motionless on my bed when a new nurse was going over charts with a veteran RN. They were less than 15 feet away from me. Neither looked in my direction but were simply pointing to pieces of paper on a table.

This patient here just had a quintuple bypass. 35. Family history. Didn’t realize he had any issues until this happened.

To this, the newbie cringed up like a tween on the still-unborn TikTok platform and said:

Oh my God. That is scary. That scares me. Seriously. Like, that. Really. Scares me.

I knew I couldn’t speak. I could barely take a breath yet. But I managed to eek out a low volume, “Hey. I’m right here.” But no one heard me. You know those nightmares where you can’t yell? This was that.

The truth is, that reaction from that nurse was my exact fear when it came to my son and the life it appeared he was about to embark on. We’d be a cautionary tale. People would see us and people would pity us. It turned my stomach.

Pity is my pet peeve. I don’t pity anyone, and I don’t want anyone pitying me. My worry was that people would watch me interact with my boy as he grows and think it was “sad”. They’d secretly believe that I wanted their kids instead of my own. They’d never complain about their own lives in front of me because mine, with my boy, must be ten times harder.

Did that happen? Sure. Some people acted that way, but not too many. Ironically, it was always the people with the worst kids that thought I wanted theirs. It used to blow my mind to see a neurotypical boy my son’s age wrecking a restaurant booth while Lucas sat quietly on his iPad, only to have the boy’s parents act like we had it bad. It was like, “Lady, your kid just broke the highchair and threw a plate at the waiter. We win.”

Another concern was that they would see me as having done something wrong. That ranked right up there with pity. Would someone give me an upturned eyebrow and whisper to their friend, “Look at him. He had to go and have a baby. Had to bring a baby into this world. Look at the life he gave his son. It’s all his fault.”

Did that happen? Again, yes. But again, not many people took that detestable point of view. Some who did were surprising. Others, not so much. Either way, that point of view that this was my “fault” wasn’t prevalent. It also wasn’t real. Do you know why?

Because my son isn’t anyone’s fault. If you’re saying I’m responsible for my two children being on Earth, then you’re right. If you think that’s anything less than for me to be proud of, you’re a dope. My kids are mine and they’re awesome. I love them both.

If I had a DeLorean to visit myself in that hospital bed, the first thing I would do is biff that nurse upside the head. The second thing I would do is tell myself the truth about what was coming up. The world I was so worried about wouldn’t say the things that kept me up at night, at least not as much as I ever expected – not even close.

There would be no brawls at the supermarket because someone called him a name. There would be no laughing teenagers on the street corner for me to ninja battle with. There was far less fighting than I ever imagined during those dark days of shadow boxing my closet door in nervous anticipation. No wonder I had a heart attack.

Maybe it’s the generation. Maybe it’s about being “woke” or open-minded or whatever, but people are generally accepting of my son. They see him for the person he is and the love he shares with those who treat him well. They don’t stare or misunderstand. He’s a part of the community to the best of his ability and the overwhelming majority of that community accepts him.

That makes me happy. I wish I had known that back then. It would have eased a lot of worry and concern. Then again, everything that happened then led to where we are. For that, I don’t regret a thing. To everyone who appreciates my son (and daughter), from the scared guy in that hospital bed, I truly thank you from the bottom of my heart.