A Day in the Life of Down Syndrome

It's Blake's life, it's true. But, I'd be lying if I didn't say that there are days when it feels like it's Down syndrome's life.

He's huggy, which is part of the reason we've affectionately dubbed him "Bear." Yet, when I saw the face of the 4-yr-old receiver of Blake's socially unacceptable advances today, I cringed at his  expressions as much as he'd cringed at Blake's touches... The pats, the hugs, more hugs, the lack of the knowledge of personal space. 

The Down syndrome attempt at being a friend, showing someone you like them, you want to play with them, be around them. It was too much.

A look across the parking lot, as we waited for sister to finish her lesson, told me that the park was too full. Too full of kids who, though different than times past, would more than likely pose the same sad questions:

"Why is he like that?" 

"What's wrong with him?"

"What's he saying?"

I grab him gently, swiftly and under the radar usher him into the car, where it's safe. There are no grimaces here with me. No harsh words tinged with borderline disgust at his lack of "normalcy."

Yep, it's safe in here. With me. For now.

And, I cry inside. Dry tears of angst, for I know the day will come when I can shelter him no more. 

Down syndrome had its day today. It won out over just being a kid, over playing at the playground, over a mother's joy of watching her child interact with another.

A day in the life... But, a day foreknown by God before the foundations of the world.

He's here for a purpose. And, until that is fulfilled, I will hug him in the in-between time, our huggable, squeezable "Bear."

Comments

  1. Thank you for sharing this post.

    Some days it feels like Down syndrome wins over us, and some days it feels like we win because of it. A journey hard to explain.

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    Replies
    1. Indeed, it is hard to explain. Thankfully, the good days outnumber the bad. :)

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