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The Joy of Playing Thumb Wars With My Brother With Down Syndrome

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If I asked you to think of an aspect of your life that wrenches your heart but simultaneously overwhelms you with gratitude and joy, it might take a while to come up with an answer. I have something that comes to mind right away.

Watching my little brother grow up with Down syndrome has had moments that made me feel like my heart was being ripped out of my chest and moments of overwhelming gratitude and joy.

Every time I experience a new life event, a portion of the excitement is derailed because in the back of my mind I wonder if the person I love most will never get to experience the same things I do. I’ve watched his peers stare at him and ask their parents, “What’s wrong with him?” I’ve seen him be challenged immensely by simple tasks. I’ve gotten used to the fact that my interactions with my 13-year-old brother are different, and I am still figuring out how to ask about his likes and dislikes or hear “I love you” come out of his mouth without him being prompted.

But, I also never thought I’d be so overjoyed to have someone beat me in a thumb-war. I never thought I’d get such a kick out of listening to a person try to sing along to songs that I’ve heard thousands of times. And the one time I did hear him say, “I love you” on his own, I’ll never take for granted. Without him and his disabilities, I would have never witnessed such a candid form of love. ​I never thought I could love someone so incredibly much with such a small amount of tangible reciprocation the way I am used to.

I’ve come to view my brother’s disability as an alteration of expectations. We would have never guessed we’d be just as exuberant to see Justin learn how to buckle his seatbelt at age 13 than we would if, say, he had been awarded MVP of a high school sports team.

I think every parent hopes their child will be a world-changer and if I know anything with certainty, it’s that Justin has and will continue to change so many worlds.

A version of this story originally appeared on Abigail Kathryn Kern’s blog.

Originally published: July 4, 2018
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