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The Down Syndrome Awareness I Needed Before My Son Was Born

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Since we are nearing the end of Down Syndrome Awareness Month, I have decided to take a slightly different approach. I am going to take a break from trying to educate people on facts about DS, and instead, take a moment to get real by admitting how I have viewed Down syndrome.

The first thing I thought, and this is really hard for a mother of a baby with DS to admit, was that I unconsciously had a very stereotypical image of Down syndrome in my mind before I had Ace. If I were to be painfully honest, I thought people with DS were happy, not very intelligent, and almost child-like. And truthfully, before Ace, I didn’t even realize that having this image in mind of DS was a bad thing. I assumed it was a sweet, positive way of viewing this disability.

I have learned so much since having Ace, but that is only because I was given no choice. No one asked me “Hey, do you want Ace to have an extra chromosome?” It was thrust upon us, so I went into full research mode and that was when I learned just how out of touch I had been.

Ace sitting outside, holding his arms out.

I have learned firsthand that people with DS feel every single emotion just the same as everyone else. It is true that in Ace’s case, he is happy more than anyone I have ever met, and how is that a bad thing? But believe me when I tell you that he is just like his momma, and you haven’t seen grumpy until you’ve seen “I’m hungry grumpy” when it comes to us!

Now let me pose this question. What makes you think someone is intelligent? Is it because they are able to solve complex math equations? Or perhaps because they can debate world issues articulately and speak eloquently with lots of facts? Whatever the case may be, maybe it’s time we re-evaluate what defines intelligence.

Yes, it is important to know facts. But if you were in a troublesome situation and could choose to be with someone who had an extreme amount of knowledge on how to get out of the problem but did not have the determination, drive, heart, and positive attitude to follow through and actually do it, or you could be with someone else who may not know every single fact, but would keep trying until they found the right combination that worked… Well, I know which person I would want with me.

Ace and his brother with Halloween pumpkins.

Maybe if I would have taken the time to learn more about DS before Ace, I would have found out that typically people with Down syndrome are born with low muscle tone, and your tongue is a muscle. It is also a common trait for those with DS to have a larger tongue, or a smaller jaw that doesn’t leave enough room for their tongue. Now to put this in perspective, think about when you have gone to the dentist and have gotten a shot to numb your mouth. Have you ever had it get a little on your tongue? Can you remember how it made your tongue feel like it was swollen and too big for your mouth and it was hard to move around? It made it more difficult to talk. Well, I imagine this would give us an idea of what people with Down syndrome are battling every single day. It did not mean that my brain quit working, that somehow just because I couldn’t get a sentence out easily that I lost all my mental capabilities. But for some reason, I assumed that because people with DS had trouble speaking that somehow correlated with intelligence. I could not have been more wrong.

And as far as thinking they were child-like or never seemed to mature in my mind, I think I was misconstruing immaturity with purity. I know they have determined that extra chromosome causes certain physical attributes, but I truly believe it contains much more than that. I believe there is something in that chromosome that is so perfect and pure and filled with God’s love. It is truly a gift for those of us that get to have someone in our lives with Down syndrome to get to experience it. In my experience, many cases, their moral compass seems to be so much stronger than anyone else’s. And because of that, it makes you want to be better. You want to make them just as proud of you as you are of them.

It is amazing to see how people can look at them with such judgment and sometimes even disgust, and yet when they look back it’s like they are still able to see the good first. Why can’t we all be more like that? Ace is not even a year old, and every day he makes me want to be a better person because of the love he has shown us. Ace has already formed a bond with each of us that cannot be broken. That extra chromosome holds so much more power than any of us will ever understand. I think we could all benefit from a little dose of it sometimes.

Originally published: October 20, 2020
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