Celebrating World Down Syndrome Day

The kids and I sported our crazy mismatched socks for World Down Syndrome Day today! My son immediately thought it was so fun and couldn't believe I was telling him to put on different socks. But he, of course, also wanted to know why. I thought I was ready for this question--I explained the reason different socks are used to celebrate Down Syndrome. I started with the idea that socks look a little like chromosomes and people with down syndrome have an extra chromosome. I then realized I had to explain what chromosomes are so I threw a quick, simple explanation of that in. I then talked about my Uncle Dan and how he had Down Syndrome. By the end, I think my son may have been starting to grasp the idea for different socks, but he also was clearly mixing up his Uncle Dan with my Uncle Dan. It was definitely not my clearest explanation.

Which made me realize how little I've equipped myself for this conversation. Having two healthy kids, I haven't really thought much about how I would share with them about genetic conditions. This is a little crazy to me, because there was never a point in my own life where I didn't know about down syndrome.

Growing up with an uncle who had Down Syndrome, I always knew what it was. Because he was a family member, but not a sibling, most people didn't know I had a connection to someone with Downs unless they made some insensitive comment. But my understanding of and connection to Downs was something I always carried with me.

My uncle was a truly amazing person. When he was born, they told my grandmother that she shouldn't even bother taking him home since he likely wouldn't live through the night. My grandmother was one of the most stubborn women I've known. At times that made life difficult for me and my family. But I'm grateful for her stubborn nature, because I know that's what made her firmly say, "He's my son and I'm taking him home." He lived into his late 40s--a long, healthy life for someone with Down Syndrome.

He loved country music and always had a particular album he was hoping for at Christmas or his birthday. Wanting to make sure he got it, he would tell everyone he knew what he wanted. Of course, as a result, he ended up with, not just one, but many copies. He was so beloved that no one could resist buying him whatever he asked for.

Eventually, I'll pass all of these stories on to my kids. We'll look at old pictures and I'll tell them all about my Uncle Dan and what a special person he was. I do some of that now, but it's hard for them to fully grasp the meaning of the stories.

But I'm encouraged that I feel this burden to pass on to them a love for and respect of those different from them. It would be easy not to deal with things like Down Syndrome until my kids are exposed to it, but I would encourage those reading to have these conversations now--even if they're tricky. My uncle grew up in a time when no one knew about Down Syndrome and I think that was often difficult for him. Awareness can be such a game changer when living with something like Downs. My hope is that by having these difficult conversations now, when my children are young, I'm raising them to celebrate differences. Long term, I hope this will enable them to respond to those who are different-abled with kindness and love.