Down Syndrome is/is not our world

It’s October and it’s Down Syndrome Awareness Month. But it’s also the peak of Autumn, the start of a school year and the end of the peak season at work.

I am in one of those moments. Suddenly, our world is not all about Down Syndrome. Our three-therapies-a-week are done; Early Intervention is two months in the past already. Zack is a superstar at his school and has made friends who hold his hands and call out his name. He is a loving, ornery big brother to Addie.

He says, “Come, Momma,” and grabs my hand to show me a toy.
If he sees me with my sandals, he exclaims, “Shoes!” and points to the door, wanting to go outside.

He gives me the most perfect hugs, rubbing the top of my back and petting my hair and saying, “Momma… momma… momma” over and over.

And if I say the word “kiss,” my lips are met with his and I feel so loved and I feel so much love.

I would love to talk to the me of three years ago — the new mother who immersed herself in DS websites and books and statistics that scared her. She worried about not doing enough; she worried about not teaching enough, not having enough of the right teachers in this unfair world.

I would tell her that she will be OK, but that more importantly, Zack will be OK and our family will be OK. I would tell her it’s not about what Zack is taught, but what he will teach so many around him.

So yes, we still struggle to understand his babblings and potty training is a work in progress; yes, we talk of things like “inclusion” and “IEP.”

As much as our world IS about Down Syndrome and the worries we have about its effect on Addie, not just Zack, our world really isn’t about it at all.

Our world is about a handsome blonde boy and a lil mischievous girl.
It’s about the way they hug and kiss and the babbles they share.

It’s about a little boy reading the Little Engine That Could and exclaiming “chop-choo” every few seconds. And me watching him, my heart beating outside my chest.

I knew you could, I knew you could, I knew you could…

I knew we could, I knew we could.

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