Not Sorry

We are winding down this Down Syndrome Awareness Month. Last year, Jameson was teaching ASL on our facebook and instagram posts. This year, our family and friends talked to our town and we were able to display blue and yellow ribbons up and down Main St.

I’m pretty proud of the little ways we are advocating but I would like to end this month with a story and a lesson that I believe is pretty important.

Recently, while talking with a nurse, she asked about my Lucky Few Tattoo. She asked what it meant and who I got it for. Of course, any opportunity to talk about Jameson and to share some sweet pictures of him and his sister is one I take and will take full advantage of. While I was sharing these her response: “Poor guy.”

Umm, what? Poor guy?! POOR guy?! At first, it caught me off guard, not the reaction I was going for here. After my shock, my first reaction was to be “WTF lady, poor YOU! You look at these pictures of a happy, healthy little boy and feel bad for him?” Instead I -tried- to keep a level head here and explain to her-nicely- that there was nothing “poor” about him, nothing to be sad or sorry about. He is pretty perfect the way he is, he’s happy, active, has the brightest smile and gives the best hugs. Then I tried to move on with my day.

Unfortunately, this isn’t the first time this has happened. Once, after I had Jameson, our church sent us a card that said “we’re sorry” in it. Another time was when I was working as a Loan Officer and my customers were taking out a loan for fertility treatments. They were looking at my pictures around my office and the husband asked me if I knew he had Down Syndrome beforehand. I informed him that we had found out at my first trimester screening where he, in turn, said to me “If I knew ahead of time, I don’t think we’d go through with it.” This coming from a man who is paying thousands of dollars for fertility treatments and still doesn’t think that a child with Down syndrome is worth life.

Here is your lesson, and I think most parents who have children with Down syndrome would tell you: We aren’t sorry and we don’t care if you’re sorry. We know that your “sorry” might be what you think we want to hear, it’s not. What we want to hear is how amazing you think our kids are, how beautiful they are. We want you to ask us about their age, their schooling and anything else that you’d say to anyone else describing their child. We don’t want you looking at our kids, seeing Down syndrome and think you should feel sorry for us. You want to know more information about Down syndrome? We want you to ask, we love talking to you about the amazing qualities our kids have, we love helping to break down the stereotypes and stigmas associated when you hear “Down syndrome”-we probably had them at one point too.   But we know now. We know there is nothing to be sorry about. WE are anything but sorry- so you should be too.