My brother Winston

A Down Syndrome Awareness Month Entry, submit your story here.
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Submitted by Tamara

I am #7 of 10 kids. My oldest sister lived one day. The next child, Winston, was born with a severe case of Down syndrome. He is non-verbal, highly dependent, and had heart surgery to save his life when he was very young. He can feed himself, but we need to prepare his food. We also learned to help him bathe, get dressed, and put on his shoes. The doctors told my parents: “Don’t expect him to live past nine years old.” “There are homes you can send him to.” My parents never entertained that advice. To them, the only choice was to bring him home and raise him. They then proceeded to have nine more children. I never knew a world without Down Syndrome. I didn’t always understand it, but my parents taught me that Winston is family and we take care of him. It wasn’t really until I became a high schooler that I began to appreciate what Winston had to offer.

We often took turns helping him with dinner, getting him in the bath, and changing him for bedtime. It was tough taking care of him, but I learned patience, compassion, and accepting situations that aren’t normal. There was a moment in my 20s when I was at home sitting on a bench, and Winston walked over and pushed me to slide over and make room for him. Once he was settled, he grabbed my hand and held it. Gave it a little shake and held it. I looked at him, and he returned my glance with this genuine smile that said, “Wanna sit for a bit?” Before cell phones were invented, he encouraged me to just sit in the moment.

A few years ago, I took him to Belle Isle. My parents were away, and his usual caregiver also needed a well-deserved day off. I decided to take him for a car ride- he loves outings! I packed his diaper bag, juice, wheelchair, and a plastic spoon. He always had a spoon in his hand, and it had to be white. He’d drum it against the window or the floor or just wave it in the air. I drove to the island, and I pushed him to see the lighthouse, which was a workout unto itself as the trail was not paved. We also walked the Riverwalk near Milliken State Park. And what struck me was that people gave us smiles or let me know when his foot was not on the footrest. I expected stares or people glancing away, but I was pleasantly surprised to see people acknowledge us as people enjoying a day out.

My children have always grown up with Winston. My parents often watched my kids, and family dinner was a weekly event. They learned his little quirks, like eating fast. Otherwise, Winston would grab their snacks. Or don’t take his spoon because that would make him upset. But what really made me proud was when my youngest, at age 11, defended him to another family member. This family member lived out of state. He mentioned to our son that Winston looked funny and that it was weird that he didn’t talk, etc., and without hesitation, our son replied, “That’s just who Winston is. He’s not funny-looking, and we love him just the way he is.”

Winston passed away this year at the age of 61. I am grateful to my parents, who took him home to be with family. I am grateful to Winston for teaching us how to love. This is a selfie of us on the Riverwalk.