Guest post by Tamara Fobare
I am #7 of 10 kids. My oldest sister lived one day. The next child, Winston, was born with Down syndrome. When he was very young, he had heart surgery to save his life. The doctors told my parents, “Don’t expect him to live past 9 years old,” and “There are homes you can send him to.” My parents never entertained that advice. To them, the only choice was to bring Winston home and raise him alongside the 9 other children they proceeded to have, including me.
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 until I was in high school that I began to really appreciate all that my brother had to offer. We often took turns helping him with dinner, bathing, and changing him for bedtime. It was through taking care of Winston that I learned patience, compassion and accepting situations that aren’t everybody’s “normal”.
I’ll never forget an afternoon in my twenties when I was home, sitting on a bench. Winston walked over and gestured for me to make space for him. Once he was settled, he grabbed my hand, gave it a little shake, and held it. I looked at my brother and he returned my gaze with a pure and genuine smile that simply said, “Wanna sit for a bit?” When I needed it most, Winston encouraged me to just be in the moment.
Winston loved outings, so a few years ago, I took him to Belle Isle. My parents were away, and his caregiver needed a day off. I gathered his diaper bag, juice, wheelchair, and 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. We drove to the island, and I pushed him along an unpaved trail to see the lighthouse, which was a workout! We also cruised the Riverwalk near Milliken State Park. What struck me were the smiles we received from those we passed, and how people let me know if Winston’s foot slipped from the footrest of his chair. I expected uncomfortable stares or glances away and was pleasantly surprised to be acknowledged as just regular people enjoying a day out.
My children also grew up with Winston. My parents often watched them, and family dinner was a weekly event. They learned his little quirks, like to eat fast, otherwise Winston would grab their snacks. They learned not to take his spoon because he’ll get upset. I can’t describe the pride I felt when my 11-year-old defended him to another family member. This person lived out of state and said to my son that Winston looks funny and it’s weird he doesn’t talk, etc. Without hesitation, my 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 brought him home and kept him with family. I am grateful to Winston for teaching us how to love.
Thank you so much for sharing, Tamara!
In recognition of Down Syndrome Awareness Month, we would LOVE your help generating stories and shifting perceptions of folks with Down syndrome.