What I wish I'd known about raising a son with Down syndrome
When I look out the window and see my son Will playing in our backyard, I’m struck for the millionth time since his birth by how much he’s just like every other little boy I know. At present, he’s riding his ATV in circles around our house — I see him pass by the window every minute or so.
In a few months, as I do each summer, I’ll look out this same window and see him swimming in the pool or riding his bike in the driveway. I’ll take him to the beach and sit in the sand while he takes his surfing lessons and then join him in the waves once it’s over. I’ll drop him off at camp. We’ll visit every waterpark within driving distance of our house because that’s his happy place — the higher the better when it comes to waterslides and roller coasters.
But I’m not writing this because of the many ways Will is like every other boy. I’m writing it because he’s not. Will has Down syndrome and March 21 is World Down Syndrome Day. The date is significant because every person with Down syndrome has three copies of chromosome 21, instead of the typical two copies. So, March 21 it is.
Some moms of kids with Down syndrome have big feelings surrounding this day. I don’t. This is unusual because when it comes to Will, pretty much the only word I can come up with to describe my feelings is big.
Big, big love. Big joy. Big amazement. Big pride.
Big anxiety. Sometimes, big anger.
Not at Down syndrome. Certainly not at Will. Not even at the things he struggles with that most people take for granted. No, the big feelings that aren’t the happy ones are about the way our society continues to devalue people with Down syndrome. The way it continues to exclude — in school, especially, but also in sports and in communities. The way parents of these incredible children are forced to fight for their most basic rights. How we agonize over every therapy, seek out every expert, spend most nights awake, torn between overwhelming love and crippling fear about the future.
I guess when I say I don’t have any big feelings about this day I mean to say that my feelings aren’t any more or less than they are any other day. Parenting a child with special needs is, at least for me, parenting at a constant 11 on a scale of 1 to 10. While I certainly love Will’s brother and sister just as much as I love him, I can say it’s a kind of love that’s freer. For the most part, I can trust they are being treated fairly, will make friends, will learn by whatever method the classroom teacher uses to teach the masses.
I can trust that they won’t be singled out or put under a microscope every day of their lives because they look or talk or act differently.
When you can’t expect these same basic things for your child with a disability, you are forced to become not only their advocate, but a detective, legal expert, therapist and a hundred more roles you could never have possibly anticipated playing in your life because hey — that’s what someone else is paid to do, right? No one else gets paid to do my job. If I don't do these things, no one will.
When I say I don’t have big feelings about this day because every day is full of big feelings, the positive side of that is also true.
Every day, I’m amazed by Will. He’s the most empathetic person I’ve ever known. There’s a homeless man we often see when returning home from a nearby park. I’ve watched hundreds, maybe thousands, of people pass him by without a glance in his direction. Not Will. Every time we see the man, Will stops to sit on the sidewalk next to him. Once in a while, I like to think if Will senses the man has had a particularly hard day, Will holds his hand and tells him, “I love you.”
This is what we need more of in our broken world. We need more Will.
The “I love you"s are plentiful. I am, by far, the recipient of the most reminders of Will’s love each day, but there are plenty left for his dad and siblings, too. No matter how many times I hear it, it’s never enough. His capacity to give love freely is like no one else I’ve ever met.
I wish I could tell the parents just starting this journey that it gets easier. In some ways it does — Will is far more independent than I ever thought he might be. Long gone are the days I thought I’d have to watch him every moment. I don’t. But as far as the intensity that those new parents may be feeling — so far, eight years in, it’s still there. It’s that intensity though, that fierce love, the parenting at an 11 each and every day, that gives me gratitude, makes me proud and fuels the determination that he will be treated with respect and dignity and fairness.
Coincidentally, the day I was told Will would be born with Down syndrome was exactly ten years ago: March 21. I was 11 weeks and 5 days pregnant. I still remember the shoes I was wearing, the weather that day and the terror I felt.
If I could go back and speak to that very scared woman, I would tell her she will love her son every day like her heart is on fire. That Down syndrome will absolutely be a big part of their lives, but in many ways, it will be their family’s greatest gift. And that life's greatest blessings are often the things you never saw coming — even when that means parenting at an 11.
This article was originally published on TODAY.com