Epiphany: Down Syndrome and “Don’t cry for me”
My brother Dean was born with Down Syndrome. Often when I say that by way of introducing a story, people will interject with, “I’m sorry.”
I always continue as if they spoke too quietly. But I hear their message loud and clear: they think Dean is a burden to be borne rather than an inherently valuable individual.
In our family, Dean was anything but a burden. In fact, he was the source of much fun. Dean struggled with our older two siblings’ names, so he called us Brother, Sister, and Heidi. When Dean learned to run, he had a quirky tendency to lean away rather than into the curve. We thought it was hilarious. Sister and I would take Dean out into the other room and tell him to run to Brother. Dean, a tiny, toe-headed toddler, dressed in only a diaper and laughing like a hyena would run at full-tilt out the door and around the corner at a 45-degree angle, feet near the corner of the doorframe, head toward the middle. We’d all laugh. Then Brother would send him back in our direction. And on it went.
Mom didn’t drive so grocery shopping was a family event. All of us piled in the car. Mom would shop and Dad would hunker down in the car with the four kids. We would sing and play games. But since both parents were teachers, any time could become a teachable moment.
On one grocery outing, while waiting for Mom, Dean asked, “Where Momma go?”
Dad said, “Dean, say, ‘Where did Momma go?’”
Dean repeated, “Where Momma go?”
Dad said, “No. Say, ‘Where. Did. Momma. Go?’”
Dean repeated, “Where Momma go?”
Barely keeping his frustration in check, Dad again said, “Where. Did. Momma. Go?”
Dean laughed, “Thopping!”
Dean is a good-looking guy now but when he was little, he was Merriam Webster’s definition of cute. He attracted attention wherever he went. “Oh, he’s so cute! What’s the little guy’s name?” It wasn’t too long before our names became “Dean’s brother” or “Dean’s sister.”
Our family spent much of our summers camping at the same New Hampshire state park. We had a pull-along, pop-up camper.
When Dean was about two, he was using mostly two-word phrases. “Momma Go.” “Numma night-night.” “No wanna.” This particular summer, Dad was backing into a narrow campsite. Precarious moments like this always called for silence.
Dad slowly inched the trailer between the two trees.
Closer. Closer. Almost there.
Out of the silence and with full grammatical correctness, two-word, toddler Dean hollered, “For cryin’ out loud, Dad, don’t hit the tree!”
The campground had a great beach with a snack bar at the far end. Once a day, one of us would make the trek down the beach for ice cream bars. More often than not, fifteen-year-old Brother would offer to go and take five-year-old Dean with him. Adults sitting near us would comment about what a great brother Brother was. We all chuckled. As Brother and Dean walked along, girls flocked over. Like a good wingman, Dean would always ask the girls, “What you name?” Dean was Brother’s girl-magnet.
Dean grew into a kind, thoughtful person who prides himself on being a good helper. He graduated high school, swam competitively in the International Special Olympics, and worked at two jobs for more than thirty years.
That’s not a burden. That’s my brother.
