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What Is Down Syndrome to Me?

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What is Down syndrome to me?

It’s two bright blue eyes that light up when they see me walk in the bedroom door each morning. One of them turns in a little bit when she focuses hard on something — it’s a pesky habit that means she’ll probably need eye surgery soon, for a second time.

It’s big hugs and kisses, excited waves, and a big “Bye!” because she’s just so excited to go play with her friends (even ones she’s never met).

It’s a voracious appetite, especially when the food isn’t on her own plate, but someone else’s.

It’s a powerful want and need to learn, to solve problems, and to do it all by herself.

Down syndrome is weekly therapy sessions. It’s hearing a lot about your child’s deficits and training your brain to translate that into “working ons” so you don’t get too bogged down in it all.

It’s making lists on your phone of the different goals you want to be addressed in your upcoming IEP meeting. It’s constantly reminding yourself to live moment to moment — but don’t forget to plan for the future, because your choices now impact every opportunity your child will ever have.

It’s the pressure of being your child’s voice, her advocate. Hoping and praying every day you’re doing enough, but not too much. Involving yourself to the point of exhaustion because you want — no, you need — to set an example for her, to make sure you know all the tricks of the trade, to keep the good things going, and change the bad ones so she can have the bright future you know is possible if people stop just looking and start seeing.

Down syndrome isn’t all unicorns and rainbows. We have hard days where we struggle to communicate and the daily log from kindergarten is just full of things that are really hard to read. We also have great days; we have friends and connections and passions that would never have existed if Down syndrome wasn’t a part of our lives. It’s such a paradox — Down syndrome doesn’t make up our daughter, and yet without it, she wouldn’t be who she is — we wouldn’t be who we now are.

Each day has become about celebrating that extra chromosome, telling people about it, and shouting the worth of our daughter and all of our many friends who have trisomy 21.

Omne Trium Perfectum, my friends. All that comes in threes is perfect.

Originally published: October 4, 2021
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