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Why I Don't Always Think About My Son Having Down Syndrome

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I don’t think about my son having Down syndrome every day. With three kiddos under 6 and two teachers in the household, there’s lots of other things to think about. There is homework and diapers — so many diapers. There are doctor appointments and surgeries, and what in the world are we going to have for dinner? We balance quite a bit as most families do, and we still try and somehow have a bit of a social life. Every now and then there’s a knock on my proverbial door reminding me our life is different.

Here’s a couple of texts I have received from Judah’s therapists and teachers:

“He rocked it at that fashion show last night. I think he found his calling.”

“He was amazing today. We were reading a book we had never read before and he saw a picture of a book in it and signed book all on his own to show me. He saw cars and made some car sounds, and when I was reading and the characters hugged, he hugged me! (I may have re-read that page twice)”

“His understanding of language has grown so much!!Judah kept coming up to me, reaching for my hands to dance with him.So cute!!!  Also imitated all the movements to the songs.  Already full day rooms are asking me if he was approved for a full day, so they can attempt to lay claim to him.  I really have to retire because I would be very jealous of someone else having him in the fall.”

So that’s our life. We’ll be trucking along parenting away when something like Judah’s popularity at a local fashion show or incredible email from a teacher, a milestone or even an insensitive comment in the world of disability will remind us, “oh yeah, we’re doing something big here.”

Down syndrome is balloons at your door and it is also reality knocking. It is extra. Extra chromosomes and extra adoration. It is extra work and surprises. It is extra magic and magic undone. It is all of the moments trekking along in the trenches whispering “we can do this.” And those moments followed by things like Judah pointing, knowing his colors, or maybe some day saying “mama.” It is a reminder that it is a non-complacent life. It is a life full of copious effort. It is a life full of meaning. It is a life I would choose a million times over.

Originally published: August 1, 2018
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