The Things I Thought I Was Afraid Of as a Mom of a Child With Down Syndrome
Why are we so afraid of Down syndrome?
This question keeps me up at night. I lie there and try to put my finger on it. I try to remember what it was like before my daughter Frankie was “just Frankie” and when my first thought in the morning was, “My baby has Down syndrome.”
I look at Frankie’s face, her body, her movement, her features. I scrutinize her. Can people tell? I think. Are they scared of her? Why would they be? Is it her nose? Cute as a button. Her eyes? So gorgeous. The way she scoots? Adorable and innovative. The way she pulls to stand? So strong. The way she smiles hugely as she manages to wiggle away from her therapist? So smart and so cheeky! I look at all these features people associate with Down syndrome and think nothing scary here.
And yet …
“I can’t do this,” I said when we got her diagnosis a week after she was born.
“You can. We will,” my mother replied.
“I don’t want to do this.”
“You have to do this,” she said.
I hope you don’t think I’m the terrible person I sounded like. I was shocked. I was uneducated. I was scared.
Now I see a pretty, determined little girl making her way from a baby to a toddler. Maybe a little slower than others but fierce nonetheless. But then I saw limits, dead ends, exclusion, slowness. I saw only failure. I was ignorant and that made me afraid.
The truth is, I shudder to think what I might’ve done if I had had a prenatal diagnosis and, therefore, would had known Frankie was going to be born with Down syndrome, if I was presented with tons of “she will nevers” and had a grim future laid out for us by some doctor who couldn’t possibly know her. Yes, I was scared when she was born, but she began educating me the moment I held her. I was lucky I had the most beautiful distraction from my thoughts of utter doom.
But it’s easy to love a little baby, right? What about teenagers and adults with Down syndrome? In the beginning as I was still processing things, I remember saying I was sure Frankie would be an adorable child, but I was more worried about what she would be like as an adult.
Society always seems to be striving for bigger, faster, stronger and smarter, and when you’re faced with a diagnosis where you think none of that is ever going to be achievable, you start to panic. What if my child needs help — possibly a lot of help — to walk and to talk and in school, work and life? What am I supposed to do? Will we ever be happy again? What will people think?
I think I was mostly afraid of that stereotype of an adult with Down syndrome bagging groceries. Let’s forget for a minute that this isn’t necessarily a reality for many people with Down syndrome. Let’s think this instead: What exactly is wrong with that? What’s wrong with a person who is doing an honest job and doing it well? What’s wrong with them doing their best and doing it with a smile? If that person is happy and if that person is loved, what does it matter what anyone else thinks?
I think a lot about how we got this way. How we came to a place where we’re afraid of people who aren’t at the top of their class, who aren’t prom queens and who don’t go on to earn a six-figure salary with a higher degree from a prestigious university. People who live ordinary lives and do ordinary jobs. The reality is that very few people actually go on to do those grand things, but there’s something about knowing from the get-go that it may not be even possible that makes it all a game-changer.
But I’ll be completely honest, if I had read this when we first got Frankie’s diagnosis, I wouldn’t have been comforted. I was still unable to accept that my child might be less than the “best.” Less than “successful.” Or what I had defined as successful at that point. I was very much in “that’s fine for you, but that’s not us” mode. I was scared Frankie wouldn’t be smart or pretty or regarded in any way. That her life would be lived under the radar basically unrecognized by anyone but her immediate family.
If you’re that mom right now, let me assure your baby’s future is as bright as anyone else’s. That he or she has options. There are people with Down syndrome blazing trails. Madeline Stuart: beautiful model. Tim Harris: successful businessman. Jamie Brewer: talented actress. Megan Bomgaars: savvy entrepreneur. Chris Burke: respected advocate. Karen Gaffney: intelligent speaker, inspiring athlete and all-around star. People who are very much on the radar!
There are protocols to help your family with everything from thyroid function to congenital heart defects to cognitive ability should you choose them. There is education from early intervention through to college programs for your child. We’re all learning as a community every day, and it’s a great time to be a person with Down syndrome. Take it one day at a time and let your child blossom. I promise they will.
In the meantime, be comforted by what you already know: Our babies are not scary. They’re not broken, or less than or substandard. They can do nothing with anyone’s pity or prejudice or patronizing or fear. But they can do everything with our encouragement, our support and our love.
Follow this journey on Eyes Like Sapphires.
The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.
Photo of Farah Lyner’s daughter, Frankie, by Wendy Wang
Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!