happy family

Dear Hurting Parent,

I've been there. As the mother of a 9-year old daughter with Down syndrome, I know what it feels like when someone says something negative or insensitive about your child, even if your child is nowhere in sight.

I think it's kind of like being pregnant, when people feel at liberty to comment on your size, or like having four girls in a family, when people think it's important to express sympathy for the father, as if he would trade at least one of them in for a boy. I guess anything different from the norm provokes comments, and unfortunately those comments are often insensitive. Sometimes they are even rude or plain old hurtful.

You aren't alone. And you aren't making too much of the comment.

But it will get better.

I don't mean that the world in general becomes more sensitive, though I do hope that will happen with time. And I don't mean that you will just grow a thicker skin, though that too will probably be the case. What I mean is that as you and your child grow, a whole community of people will begin to actually know and love your child.

With our daughter Penny, at first I felt like only my husband and I could see her. Even our closest friends and family members stumbled over language. They called her a "Down syndrome baby," and I wanted to glare at them and say, "She's a baby with Down syndrome. The baby comes first and the diagnosis second!" I had close friends who talked about how great it was that she would never fight with her siblings or care about being popular in high school, as if Down syndrome automatically segregated her from typical teenage experiences. I had colleagues who said I was brave to have more children. A man at church offered to pray against the "evil Down syndrome." And especially when those comments came from the people I loved, I felt so alone.

But over time, those people started to see the particularities of our daughter—the way she giggles, her love for books, her coy smile when she wants her own way. Our closest friends and family started to see her tenacity, her sense of humor, her love for sparkly shoes.

But beyond that close and immediate circle, there is the neighbor across the street who wishes she had grandchildren, and who asks Penny to come over to bake cookies and read books together every once in a while. There is the crossing guard at Penny's school who looks her in the eye and says hello every day, and the waitress at the local restaurant who knows Penny can order dinner all by herself. They all got to know Penny as her own person first, with Down syndrome as a secondary descriptor.

With time, the same thing will happen to you with your child, no matter what special needs she (or he) has. As you and your child grow, a whole community of people will begin to actually know and love your child. Your friends, your family, your faith group, and even consequential strangers will start to see your child as who she is, instead of through the lens of her diagnosis.

It'll be a lot harder for people to say insensitive things once they actually know your child. And when someone else does say something insensitive, you won't be alone in caring. You'll have people who are with you, who can disregard generalizations and stereotypes, who love your child, and who want the world to know your child for who she is.

But for now, what should you do about the hurtful comments?

The best way I have found to deal with the pain is to live a life of love with my daughter -- through hugs and snuggles, through laughter and singing her to sleep, through listening to her talk about her friends and her day.

People will always say insensitive things. But your support network will continue to grow more and more sensitive to the needs and beauty of your particular family, until those comments just won't matter in the same way anymore. Let the ignorance and meanness roll off you. And let gratitude seep into the core of your being, knowing that you have the privilege of raising an awesome child.

With love,

Amy Julia

Amy Julia is the mom of three kids who love broccoli and hot dogs, and who ask for lollipops every day! Her guilty pleasures are Chardonnay and Diet Coke. She is also the author of Small Talk: Learning from my Children about What Matters Most and A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny. Visit her at