What Awareness Means to Me as a Father of a Son With Down Syndrome

When our son, Jude, was given a probable diagnosis of Down syndrome about half-way through my wife Nicole’s pregnancy (we didn’t confirm it until he was born), she and I began doing research. We didn’t know much about it, so learning quickly became a top priority for us. Much to our relief, there is no shortage of educational information when it comes to Down syndrome. What surprised me was the number of websites dedicated to not only educating people on what it is, but also on raising awareness of it. As one who was mostly uneducated and unaware, I (rather ironically) wondered why there was such a concern for “raising awareness.” Aren’t people already aware that Down syndrome is a thing?

What I didn’t realize is that being aware that Down Syndrome is a thing is quite different from understanding it. And even if someone understands the genetic ins and outs of Trisomy 21, they may not understand what it means to have Down syndrome or how important individuals with it are to the world. I realized the difference following a conversation several months later.

After Jude’s birth, I was walking my dog when I ran into some neighbors. I told them he had arrived, and they expressed their excitement for us. As we talked, I revealed he has Down syndrome. I was surprised by what was expressed next.

“Oh, no. He’s Down’s? I’m sorry.”

The statement came with a tone of sincere sympathy. He was truly sorry.

But sorry for what? At the time, I took it to mean that he was sorry we had this kind of baby. He was sorry that we didn’t get a better one. He had just congratulated me, but now it was as if congratulations were no longer in order. We were pitied.

It was one of those moments that I feel like I’ve seen on TV shows. You know, when a character says or does something out of line and is about to learn a valuable lesson? You know the moments I mean. The moments that you kind of roll your eyes at because they never happen in real life.

But it turns out that people really do say such things on occasion. And because it wasn’t what I expected to hear, I was totally unprepared to respond.

I don’t really remember exactly what I said in response. I think it was something like, “Oh, no, we are thankful for him.” And we were. And we certainly still are. And in fairness to my neighbor, I don’t think he had any hurtful intent. I certainly don’t think he intended for me to take it the way that I did. But as I have thought over that conversation since that day, I have had several different feelings. At first, I felt shocked. Then I was angry. More recently, the anger has disappeared and been replaced with empathy. I have come to see that for the better part of my life, I might have felt a little of what my neighbor seemed to express that day.

When the possibility of a Down syndrome diagnosis first came up, I had a brief period of denial. Why? Because I apparently assumed it was something that is undesirable. It was the same assumption my neighbor apparently had. And whether or not I would have actually said something like that to a new parent, I now realize how ignorance about Down syndrome can lead people to think all kinds of unfortunate things. And I was certainly not immune.

That is why I think it is so important that we raise awareness.

Awareness that people are not “Down’s people,” but first and foremost people who happen to have Down syndrome.

Awareness that the unique challenges Down syndrome may present are not the only side of the coin.

Awareness that Down syndrome is not a disease or some kind of devastating affliction.

Awareness of the accomplishments of people with Down syndrome (driver’s licenses, degrees, jobs, marriages).

Awareness that I believe people with Down syndrome bear the image of God along with the rest of humanity and are masterfully crafted by a good and wise Creator.

And on a personal level, awareness that, on most days, I don’t spend most of my time thinking about the fact that my son has Down syndrome. Not because I am still in denial, but because, as many have already pointed out, he and I are more alike than we are different.

October is Down Syndrome Awareness Month. You will probably see a lot about it on your social media accounts and elsewhere. When you do, please take a few minutes to read up on it and share what you learn with others. You may find out that some of your assumptions about Down syndrome are misguided or even totally wrong.

I know I found that to be the nature of many of my own assumptions. My son is a gift, and there is nothing about him I would desire to change. When I first found out that he might have Down syndrome, that was not the case.

I thank God that I am more aware now.

Follow this journey on Adam’s Notepad.

Photo credit: AK Photography