Just how “bad” is Down syndrome?


Yesterday I was waiting in the checkout line at the grocery store. Emir and Ayelén were playing around with a big ball. I don’t know if this is “normal,” but often, I completely forget that my kids have Down syndrome. I just treat them like kids, for better or worse. I can be the sweetest mom when they are behaving well and I can get really mad when they don´t follow directions. Down syndrome has never been an excuse for them to misbehave. They’re my kids; I know what to expect from them.

So there I was watching and after a few minutes, I asked them to stop. They were excited, giggling and making funny faces to each other, and ignoring me. Isn’t that a typical behavior? I think so, but then a woman came up to me and asked, “How bad is their syndrome? I mean, how much is the percentage of syndrome that they have?”

Not only do my kids have Down syndrome, but I have ADHD. So sometimes, it’s really hard for me to focus or make a good connection with people, much more so when they catch me off guard.

So there I was with this stranger in front of me, with no words in my mouth or ideas in my mind.

After a moment or two (that she stood there looking at me) I told her: “It’s bad, it’s really bad…a really high percentage of the syndrome, probably the worst ever.”

And she said: “But they act so typical,” and I said “Yes, that’s why I think their percentage is so high and so bad.”

At that moment her mouth was literally open and her eyes bright and big.

“Do you mean the worst the syndrome is, the more typical they are?”

I said, “They are kids first, and yes they have Down syndrome. It’s an obvious condition because of their physical features. But Down syndrome is not bad. It’s not a bad word or a sin to be ashamed of. I’m proud of them for who they are. For me, they are heroes achieving everything and more, with an extra chromosome.”

She smiled and left. I stayed in line, feeling more proud of them than ever. But I kept thinking: Why is it so bad to have Down syndrome?

Down syndrome is not bad at all. It’s not ideal, and most of the time it’s unexpected and unwanted. But it brings many good things for us.

Growing up with Down syndrome is not traumatic or frustrating, is just about growing up with these goals:

-              Learning how to do your best

-              Enjoying life more than ever

-              Not giving up, no matter how many times you have to try again

-              Discovering the magic of the small things, and learning how to slow down to admire the things that really matter.

-              Sharing with others your pride and excitement at every small achievement.

-              Celebrating life without prejudices.

I have the perfect team at home. Two extra chromosomes don’t alter the outcome, everything is good in this small world, despite our challenges and thanks to our unexpected prizes. We´re growing, we are enjoying and yes, we are all highly affected with Down syndrome.

And be careful: Down syndrome is so “bad” that it’s contagious, because you’ll never be the same after loving a person who has it. After being infected you’ll surely be a better human being, because you’ll learn to believe and be surprised by the miracle of love.

I just hope that lady in the grocery store follows my blog.

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