When I Say My Brother Has Down Syndrome, Please Don’t Tell Me You're Sorry

I know people usually mean well and want to sound compassionate, but I don’t want or need your sympathy.
Publish date:
July 20, 2016
family, siblings, down syndrome

Of all my high school moments, there’s one that is not so worthy of being a memory. I was standing near a stairwell in high school and overheard some of my classmates talking. They made a joke. I can’t quite remember what the full joke was, but what stuck with me was the punch line: “There’s nothing funnier than a baby with Down syndrome.”

The words tumbled out of the lips of some stupid 14-year-old boy and rang in my ears as I ran down the hall of my high school, opened the door to the staircase, and began to cry.

A few weeks prior, at my mom’s 21-week checkup, I had found out that I would be having a little brother. I grew up in a family of three sisters, so our family was due for some testosterone. I was excited to be a big sister again, and this time I would be able to appreciate all the things I was too young to understand when my sisters were born. I would be able to remember all of his milestones, alongside my parents, and watch him grow up.

During the same sonogram, the technician’s face quickly shifted from congratulatory (“You’re having a boy!”) to worry. She told us she wasn’t getting the view of the heart she wanted and swiftly exited the room. My parents and I were left with knots in our stomachs and tears in our eyes. The medical professional who returned in the technician’s place told us that my mom needed a fetal echo. The test showed some cardiac abnormalities. That led the pediatric cardiologist to suggest that my mom get an amniocentesis. (If you know what this procedure entails, you’re probably cringing along with me as I write this.)

When the results came in from the echo, they showed that my brother would be born with a combination of congenital heart defects. The doctors told us that the mix of defects is present in 50 percent of babies born with Down syndrome, to which my mom replied, “But my baby doesn’t have Down syndrome.”

And for one of the first times ever, my mom was wrong. Her baby did have Down syndrome, proven by the amniocentesis, a little set of cells extracted from my mother’s abdomen.

To say we weren’t sad and scared wouldn’t be true.

But this little boy was going to be my mother’s first son — and my first brother. For our family, it was never a question of whether my mom would continue with the pregnancy. Carter was already ours, and we couldn’t wait to meet him.

Looking back, I’m not sure why, but one of the things I was most excited about was the day when I would look out in to the stands at one of my volleyball games or at graduation, and I would be able to see my little brother cheering for me.

He didn’t disappoint. Carter, now 4 years old, brings his hands to his mouth every time he sees hunter green and pretends to yell “COUGARS” — my high school’s mascot.

Many people are uneducated about what it means to live with Down syndrome and in turn perpetuate a lot of misinformation — even some doctors. The extent of this ignorance varies, of course. I’ve heard people assume that a child with Down syndrome would never read, attend college, or live on their own. Some still refer to people with Down syndrome as mongoloids — which was unfortunately a popular term in the past — and one woman simply put it as, “I don’t want my baby to be an idiot,” because to her, that was all her child could amount to be. The idea that many families who find out their baby will be born with Down syndrome receive false information and discount the abilities of a child they haven’t even met saddens me.

My family, however, was lucky: We received accurate information from doctors, as well as support from the vibrant Down syndrome community in New York City, with whom we became immediately involved, meeting dozens of families of children with Down syndrome. But knowing that many people aren’t as fortunate as we are, we feared the ignorance and intolerance that would come from people who have skewed, outdated, and downright wrong ideas about Down syndrome.

The potential hardships my brother would have to face due to other people’s misconceptions were distressing and upsetting, and for that, we were scared about what the future held for our little guy.

My brother is constantly showing me what it means to be tiny but mighty.

At just under 40 pounds, he is a master horseback rider, iPad watcher, and dinosaur impersonator. He dabbled in baseball as well, but it wasn’t exciting enough for him. He snacks on popcorn constantly — which he’s learning to make himself — and has the occasional hankering for ice cream (or creeeeeeeeeam, as he lovingly calls it).

Does that sound like someone who is suffering, or who wants your pity? I don’t think so.

I’ve seen my brother judged by people before they meet him. He’s underestimated, and his abilities are questioned. When we were applying to preschools, some schools wouldn’t even consider him as a candidate because “Down syndrome” was written on his application. All those other schools missed out on meeting his pint-sized body, ready for a firm handshake and a soaring rendition of “Let It Go.”

I’ve heard many accounts from my mother about rude people asking her why she chose to continue with the pregnancy after she found out Carter had Down syndrome, as if it were outrageous or crazy for someone to knowingly give birth to a child with Down syndrome. In those moments, my mom is reminded of the ignorance in this world, yet somehow manages to craft an informative response with only the slightest undertones of an F-U.

The thing that angers me the most, though, is when I mention that my brother has Down syndrome and am met with the response of “Poor baby!” or “I’m so sorry.” I know people usually mean well and want to sound compassionate, but I don’t want your sympathy.

Please don’t apologize to me for having a brother with Down syndrome, and certainly don’t feel bad for him; it’s only people like you who I worry about as he grows up. People who don’t see his full potential or feel like he is any less great than all the other little boys who exist in the world.

Carter is certainly not an angel all the time. He gets frustrated (like all toddlers) and yells (like all toddlers) and sometimes throws his toys full-force at my head (like all toddlers). Unfortunately, his frustration sometimes comes from his inability to find the words to communicate his feelings. He knows dozens of words in sign language but is still learning to string sentences together with his words. He has to work a little harder than many 4-year-olds to learn things for the first time, but that’s OK. He will learn them.

That goes back to my earlier point: In order for him to reach his full potential, he needs to be surrounded by people who believe he can reach it. Support is crucial. It might seem silly to strangers when they see our family cheering Carter on for random acts he does — be it walking down stairs on his own or taking one step deeper into the pool or even telling us when he has to use the bathroom (sometimes after the fact) — but we do this so he has the confidence to know he can and to give him the courage to keep trying things he’s struggling with.

He knows his family and friends believe in him, and we’re always ready to pump our fists in the air as we say together, “Hip hip hooray!” But my hope is that more and more people will begin to believe in him and the millions of people like him.

Instead of apologizing to me that he was born with an extra chromosome, ask me what his favorite activity is, or what his favorite movie is, because I’ll tell you it’s High School Musical and, if he’s next to me, we’d be happy to sing our rendition of “Start of Something New” for you while he swings his hips side to side.