When a Stranger Asked If I Was Going to Keep My Son With Down Syndrome


twins.12.16.93edit When my younger son was born, I was handed a sheet of paper, dated 1960. It described my beautiful, blonde, blue-eyed preemie as a “mongoloid idiot who would probably die before his 50th birthday.” I remember the heat wasn’t working in our hospital room. My son kept turning purple because he couldn’t maintain his body heat. His unexpected twin sister was turning yellow from jaundice. I was overwhelmed, and scared. Down syndrome? Now what?

I had five children. I walked into the ShopRite a week after the twins were born, with my two older daughters, 10 and 6, and my 2-year-old son. The twins were in a car bed, wedged into the front of the shopping cart. I kept my hand on it. Every day was an adventure; even the simplest errand required planning and forethought. At that point it was taking me 25 minutes to get the kids organized and buckled up in the minivan. I was just taking things day by day, sometimes minute by minute. Each night I would walk outside, look up at the stars and praise God for getting me through another day.

My daughters felt important, scooting up and down the aisles, picking up items for me. I could push the cart with one hand and hold on to my son with the other. I remember thinking, “OK, this will work.”

One of the cashiers saw me with the children and came hurrying over. “Oh, you had the baby!” she exclaimed. She looked at my infant daughter, in her little pink dress and bonnet, blonde curls peeking out. “What a cutie,” she cooed. Then she saw my newborn son, rosy-cheeked in his darling blue overalls. She looked up at me, accusing, “Are you going to keep him?”

I felt my heart break; my older girls glared at the young woman. My 6-year-old looked stricken. Mommies didn’t give up their babies, did they? I could see the wheels turning in her head. I picked up my toddler, balancing him on one hip as I reached out to caress the girls and my twins.

“I’m going to keep all of them,” I spoke calmly. “It’s a package deal. They’re all my kids.” I thought of my mother’s unspoken training: When things are bad, smile. When things get worse, laugh. The young woman shrugged and walked away,

I turned to Elizabeth and Maggie. “Could you pick me up a big bag of carrots? Right there. You two are such a big help.” We couldn’t really afford it, but I was going to buy some ice cream. That night I planned to read their favorite stories and let them stay up a bit longer, just to talk. This was just the first time they’d encountered prejudice. I would need to arm them for future assaults.

I turned to Joe, snuggled in his car bed and stroked his rosy cheek. Yes, I was still overwhelmed, but this child manifested such joy and peace. Why couldn’t people see how lucky I was?

This was the beginning of my career in advocacy. I had been a quiet, soft-spoken person. Now I would learn to insist, to speak out, to make things happen, for my son and for others.     

Twins.2014  

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