When Someone Asked If I Wish My Son Didn't Have Down Syndrome
One day on a trip down the rabbit hole that is the internet, I came across a discussion board where parents were weighing in on a question: If you could, would you choose for your child with Down syndrome to be typical instead?
There were a lot of different takes on this topic and I’m not here to tell you which outlook is right, and which isn’t. What I can tell you is that anyone who stated that they would take away their child’s diagnosis said so on the grounds they did not want their child to struggle and if they could take that away, they would. And the truth is that children with Down syndrome will very likely struggle with something at some point during their lifetime, and those struggles will likely be connected to their diagnosis. This is something that we as parents of children with Down syndrome know to be true. If I said it didn’t keep me up at night sometimes, I would be lying to you.
Before I became a parent to a child with Down syndrome, I often felt pity for individuals with disabilities. I remember the moment that changed very clearly. I was with my son at an appointment with the eye doctor. He wasn’t quite a year old. We were in the waiting room and I saw a toddler walk by me wearing leg braces. I thought to myself what a strong little boy he was. That’s when it hit me. Old me, with the best of intentions, would have felt a pang of sadness. New me didn’t feel that way at all.
I have often read that parents often grieve the loss of the child they expected to have. This is not something I experienced myself, but it’s very common and part of the process for many. So, as traveling down the rabbit hole often does, it got me thinking. What would a world without Abel’s diagnosis look like? I had never considered this before.
Somewhere in some alternate universe, where cells divided differently and there is one less chromosome in each cell, there exists a little boy. His birthday is four weeks after yours, closer to his due date, and he is 3 years old. Maybe he has thick blonde hair like yours. Maybe he has green eyes like yours, the ones you inherited from me. Maybe he has your perfect heart-shaped little mouth and deep Cupid’s bow. Would he have your curly eyelashes that started off as white and have darkened with age? Maybe.
But… He doesn’t celebrate his birthday on August 5th, four weeks ahead of his due date. He’s never met any of the NICU nurses at Good Samaritan Hospital. He’s never attended a Buddy Walk and his face wasn’t on the Jumbotron at Times Square. Maybe his eyes aren’t quite shaped the same way as yours. Your big round eyes that turn into little half-moons when you smile and laugh. Maybe he doesn’t have your same toothy little grin, your delicate little nose, and tiny ears that require an actual microscope to see into. The features Down syndrome gave you. The features I adore and marvel at while you sleep.
And maybe he said his first words sooner, took his first steps earlier. Maybe I wouldn’t have cried tears of joy and relief when you finally called me “Mama” soon after your third birthday this year. Maybe I wouldn’t tear up every time you say a new word, or when you bring me a little plastic dish with a slice of plastic pizza on it and patiently wait while I pretend to eat it. Would I take these things for granted? Something tells me I might. You see, you’ve given me a reason to appreciate what a lot of people might consider the small things. The things I considered minor before I met you.
There are so many maybes.
In another world, another set of circumstances, there is another little boy. But he isn’t you. You are my son. And you are exactly as I want you to be. I love everything about you. Every cell in your body and every chromosome. If I could live one hundred lifetimes, I would choose you in every single one.