Ode to My Sister by Margaret Hart

My sister was here recently for her annual summer visit. We don’t see each other often because she lives in mid-coast Maine and I live in southern Connecticut. It’s a good seven-hour drive or maybe six hours if you drive 85 miles an hour, and don’t stop for food, gas or bathroom breaks. Not that I’ve ever done that!

My sister is seven years younger than me and almost two feet shorter. What she lacks in height she makes up for in personality. She loves to talk. She loves to have fun. She has an infectious laugh. She loves people, especially her friends and family, and everyone who meets her loves her, too. She is my only sibling, and I can’t imagine my life without her in it. 

When people meet my sister for the first time, often what they see first is that she is bald.  In fact, she has no body hair whatsoever. (I’ve often been envious that she’s never had to shave!). She has a form of Alopecia. She first lost her beautiful, long hair when she was a little girl. It grew back once or twice after some medical treatments, but ultimately it fell out again, and never came back. She isn’t a big fan of wearing a wig, though she has several, including one beautiful natural hair wig that was custom made for her by a woman in Connecticut who makes wigs for cancer patients. Most of the time my sister wears a baseball cap or something similar, or she just goes au natural.

The next thing most people notice about my sister is that her facial features are different. Teresa was born with Down’s Syndrome. As the National Down Syndrome Society (NDSS) explains, “A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes….although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.” According to NDSS, one in every 691 babies born in the United States is born with the syndrome, making it the most common genetic condition. Approximately 400,000 Americans have Down syndrome and about 6,000 babies with Down syndrome are born in the U.S. each year.

Although she is a woman in her 40s, when I look at her, I see my little sister. I don’t see her as a person with DS, and neither does my son; he adores his Auntie T. The feeling is mutual. My sister adores her nephew and cherishes her role as an Aunt.

Until she was about 30 years old, my sister lived at home with my parents. She went to public school, graduated from high school, went to her prom, had lots of friends, was involved in various social activities, and held part-time and full-time jobs–a life not unlike most young adults. When my parents retired and moved from Upstate New York State to Maine, she moved with them. And not too long after that, she moved into a group home near the ocean in a lovely coastal town close by.

Growing up, I was a very protective big sister to anyone who would tease, stare or make discriminating remarks toward my sister. Back then, it wasn’t uncommon for ill-mannered children (and even some adults) to use the word “retard.” Fortunately, my sister was spared a lot of name calling and bullying as she grew up in part because she was surrounded by loving family and friends, as well as responsible teachers and adults. She was also somewhat oblivious to the fact that she was any different than anyone else.

When I was in my 20s and early 30s (before marriage and motherhood) living and working in New York City, my parents would put my sister on a direct flight to LaGuardia airport, and I’d meet her at the gate. She loved visiting me in the City, and would always insist that we took a taxi everywhere we went. I would take her to concerts and trendy restaurants, shopping and sightseeing. To this day she loves to talk about the time we wen to the Debbie Gibson concert, and later to see Madonna. She has always enjoyed the excitement of NYC. 

Much of the credit for the woman my sister has become goes to my parents, who have devoted their lives to providing her with opportunities and support. My mother, a Special Education teacher for more than 30 years, always held the view (and still does) that anything was possible. When I look back, she raised my sister no differently than she raised me. She instilled in both of us a sense of confidence and security, and raised us to be independent and self sufficient. She told us, in essence, that the world was our oyster. My mother continues to inspire me.

My sister inspires me, too. She wakes up every morning with a smile on her face, and always sees the glass as nothing less than completely full.

Tags: childhood memories, Down Syndrome, family, little sisters, National Down Syndrome Society, siblings, sisters