I have two sons. My oldest, who is 7, has Down Syndrome, and my youngest, age 5, is “normal” – whatever that means. They are like most brothers: Sometimes they get along, and sometimes they fight. They play together when they’re not grabbing each other’s stuff, they yell and laugh a lot, and they conspire against me whenever they can. As for me, I am just like other mothers: I spend a lot of time schlepping the boys around, meeting with their teachers, planning birthday parties, and sorting socks. In other words, we are pretty much a typical family.
My problem can be summed up in one word: strangers. No matter where we are, people smile and say that my oldest boy “must be a handful” (when he’s actually more cheerful and resilient than my younger son). Others say that I’m “courageous.” (Because I’m a mom? Because raising my sons is a battle?) Sometimes they point out my son to their own children and talk about him, loudly (!), which feels like they’re using him as an object lesson. Worst of all, so many people ask if I knew my son had Down Syndrome when I was pregnant. In other words, why didn’t I have an abortion?
I actually was pregnant when I found out my baby had Down Syndrome, and yes, I was incredibly upset. I was also terrified. It took a lot of time and counseling and education to get past my misconceptions and make decisions that felt right for me and my family. So I know that these strangers mean well—they just don’t know as much as I do about it. But I’m so tired of it. There are even days when I avoid going to the grocery store, the mall, and even the playground because I just can’t deal with the stares and questions. How can my family (and I) have normal lives when the world thinks we are so abnormal?
First of all, you are courageous. Raising children is not for the faint of heart, regardless of what your kids are like or how capable you are or whether you cook every night or hit the drive thru or homeschool or go the public route or cut coupons or have five nannies. None of it matters. If you’re a mom, you deserve a badge of courage.
What’s hard is when people pin that badge on you for the wrong reason. For one thing, it’s a huge insult to your kids. Are they really so demanding and difficult that you need to be braver than any other mother? Sure, some kids are more challenging than others, for all kinds of reasons. But raising them isn’t about courage. It’s about love.
The wrong badge is only the beginning. You also get to wear a crown, to be noble and willing to sacrifice all for the sake of God and Queen—when maybe you aren’t. Maybe you plant your kids in front of Scooby Doo for just one godforsaken hour so you can check Facebook and have a glass of wine. Maybe you rely on takeout because you hate cooking, or let your kids sleep in their clothes because enough with the whining already. Aren’t you allowed those imperfections? Why do you have to be so perfect, all the time? Why do you have to care about a crown that (gasp) doesn’t even exist?
The short answer is you don’t.
I’ll admit right up front that ditching my own crown was much, much easier for me because my son’s differences are less obvious. My capital Q quirky, introverted son self-isolates, preferring to be alone. With any group of children he is far removed, happily engaged with his own imagination. He’s a real-life Calvin and Hobbes, fully alive somewhere else, and resenting it when others yank him back to so-called reality. During our playground years, that meant that I was isolated, too. Keeping an eye on him meant that I was far away from the other mothers, missing out on the socializing that I craved. Still, it wasn’t that hard. My son was happy and safe, and I loved just watching him play. What a kid! What an imagination! Maybe he’d be a writer, too!
One day, when all the other kids were playing touch football, I was with my son on the other side of the playground, applauding as he hung upside down and floated on the far-away and gravity-free Planet Monkey Bars. That’s when another mom made her way to me, smiling gently. “You are so amazing to let him be who he is,” she said. WTF? What did that even mean? He is who he is. I wasn’t letting him do that any more than I was letting him have dark hair. And even if I had a choice, why would I change who he was?
That was five years ago and I’m still mad. So I can only imagine how tired and aggravated you feel to hear things like that every single day. So my answer to your question may seem inadequate, or at least in the category of Easier Said Than Done. But if you want to live a normal life when the world thinks you are abnormal, my advice is:
Live a normal life.
Just do it. Own it. There’s no escaping the ignorance of other people, even when they have kind hearts. Still, it might make it easier if you have a few stock responses so you won’t be knocked off-guard every time someone approaches you. You’re so courageous? “Not really, but thanks.” Your son must be a handful? “He’s actually pretty easy, but thanks.” Did you know he had Down syndrome when you were pregnant? “TMI!” or a cheerful and (half) joking “I’d tell you, but then I’d have to kill you.”
Bottom line: Live in the world, and rest when you need to. Go shopping, play at the playground, eat out, do all the things you want to do and don’t worry about other people. As you said early in your letter, “normal—whatever that means.” So screw normal. Other people’s definitions don’t have to be yours. Define what it means for you and your family and float, gravity-free, without other people’s misguided ideas weighing you down. It’s your life, not theirs. Live it.