The day that I found out Owen would probably have Down syndrome was a somber one. I was sad, scared and angry. I remember thinking that the song “Paint It Black” really spoke to me. Our house felt like a funeral. Fast forward to today and there is a much different tone. It is World Down Syndrome Day. The sun is shining, my baby is smiling and I am celebrating the fact that he has an extra chromosome. The mood among those in the Down syndrome community is celebratory. Everyone is excitedly sharing their “Day in the Life Stories” to show the world that our kids lead pretty normal lives. I am excited to see people on facebook sporting blue and yellow or colorful socks to celebrate today. I am excited to see people participating who aren’t directly connected to someone with Down syndrome. It’s a good day.
I live in Kentucky where basketball is somewhat of a religion and the NCAA tournament is our sacred festival. It worked out really well that the blue I am wearing for World Down Syndrome Day is pulling double duty to support my wildcats. Dayton totally messed up my bracket yesterday when they upset Ohio State, but a great moment happened when during the game, Miya Oliver was interviewed about her brother, Devin Oliver, forward for the Dayton Flyers. Miya has Down syndrome and she was at the game supporting her brother. They are each other’s biggest fan. I was at work while it happened but my husband texted me about it so I started googling to see if I could find the video. I couldn’t find the video right away, (turns out the internet isn’t completely instant), but I did find lots of social media commentary about it, and while mostly positive and complimentary, one comment stuck out to me.
“That was Miya, Devin’s sisters. She suffers from Down syndrome.”
I finally did get a chance to watch the video and I didn’t see the part where she seemed to be suffering. She looked like she was having a great time. Perhaps because she doesn’t talk or look like the majority of the population someone might conclude she is suffering? Is it a tragedy to be different? In fact in contrast to the commenter’s statement, in the interview she said “I am excited to be who I am.”
For those who love someone who has an extra chromosome, today is about stating the obvious. People with Down syndrome aren’t suffering. This video is called “Dear Future Mom” but it is something we ALL need to hear. Owen is my son, but someday he may be your neighbor, friend, classmate, student or teammate. I won’t have you going around feeling sympathetic for him. It would be great to live in a world where people didn’t assume intellectual disability meant suffering. It would be great to live in a world where a mother received the news that her child has Down syndrome and could skip the grieving and go straight to celebration. It would be great to live a world where a person’s value didn’t rest on their IQ, but how much they care about their fellow man and woman. It would be great if while being interviewed about something completely unrelated to her genetic makeup, Miya Oliver didn’t feel the need to state “I am excited about who I am.” Someday maybe people will meet her and just be able to see that in who she is. Today is about taking steps towards building that world, but it is a full-time job. I think society progresses when we step outside of ourselves and live in someone else’s world and that is what I’d like to ask you to do today. Get to know what Down syndrome is, and what it’s not. It’s one thing for me to tell you to be nice to my kid, that he is not afflicted, but just a person like everyone else. It’s another for you find out for yourself what it’s really like to have Down syndrome and make it apart of your worldview. I would encourage you to not stop at reading this blog post, but educate yourself with some of the links below:
A few of my favorite blogs: