When Jude was given a probable diagnosis of Down Syndrome about half-way through Nicole’s pregnancy, we 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 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 did not realize is that being aware of Down Syndrome is quite different from understanding it. Even if someone understands the genetic ins and outs of Trisomy 21 (aka: Down Syndrome caused by three 21 chromosomes), they may not understand what it means to have Down Syndrome or how important individuals with it are to the world.
It took a conversation with some neighbors for me to understand that people unaware of Down Syndrome simply don’t understand what it is.
After Jude was born, I was walking our dog and ran into some neighbors. I shared with them Jude had arrived, and they expressed their excitement for us. As we talked further, I revealed Jude has Down Syndrome. I was surprised by what was said next.
“Oh no. He’s Down’s? I’m sorry.”
The statement came with a tone of sincere sympathy. My neighbor truly was sorry.
But sorry for what? At the time, I took it to mean 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.
Understanding Down Syndrome
It was one of those moments I feel like I’ve seen on TV. 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 you kind of roll your eyes at because they never happen in real life.
But it turns out 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. 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.
I have thought over that conversation since that day and have had several different feelings. At first, I felt shocked. Then I was angry. 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. I had assumed it was undesirable. It was the same assumption that my neighbor apparently had. I now realize how being ignorance of Down Syndrome can lead people to think all kinds of unfortunate things.
I was certainly not immune. But that is why I think it is so important we raise awareness—awareness that people are not “Down’s people,” but first and foremost people who happen to have Down syndrome.
We need awareness of the unique challenges Down Syndrome may present, but also awareness that they are not the only side of the coin. We need awareness that Down Syndrome is not a disease or some kind of devastating affliction. We need awareness of the accomplishments people with Down Syndrome make (driver’s licenses, degrees, jobs, marriages, etc.).
We need awareness that 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.
On a personal level, I can raise awareness that on most days I don’t spend time thinking my son has Down Syndrome. No, I am not in denial. But because awareness has allowed me to see, as many have already pointed out, he and I are more alike than we are different.
Can I ask a favor? Would you please take a few minutes to explore one or two of the links above and share what you learn with others? You may find some of your assumptions about Down Syndrome are misguided or even totally wrong.
I found that to be the nature of my own assumptions at first. My son is a gift, and there is nothing about him I would desire to change. Yet when I first found out he might have Down syndrome, that was not the case.
I thank God I am more aware now of Down’s and of how God has gifted my son in many ways.
Published October 26, 2017