Today is World Down Syndrome Day. A play-on-numbers, 3/21 symbolizes what Down syndrome is: three copies of chromosome 21. To all of us in our community, it is a celebration.
I came into the world of Down syndrome somewhat unexpectedly. Many years ago, Michelle and I were acquainted through our respective work companies and saw each other at different Chinese-related events. Although we were not friends at that time, we were friendly and respected each other. I remember the Chinese New Year party, in 2005, when she told me she was expecting. I was happy for her, as I knew she had been wanting to have a baby. We did not keep in touch as much, but I knew she had given birth to a baby girl.
Months later, she invited me to the event that honored her as one of most influential women in cable industry. As I went upstairs to the VIP reception, I saw her holding Sophia. I remember very distinctly, Sophia was wearing a beautiful white and pink dress. As I approached Michelle to congratulate her, she asked me to put a pin on Sophia’s dress. I will never forget that moment, when I realized Sophia had Down syndrome. I remember recoiling, from the sheer surprise. I did not know. I just didn’t. I asked some of my former colleagues why nobody had told me about it, and one person, I won’t name names, said: “Who would want to talk about THAT?”. I may not have known anything about Down syndrome, but I knew that was wrong. It. Pissed. Me. Off. I immediately felt, with only the passion a Romanian can have, and for various personal reasons, the unfairness of that comment. I could not forget the image of Sophia, in her mom’s arms, trying to grab the microphone as Michelle was giving her speech. I emailed Michelle and I told her I would help her in any way I can. She immediately responded and few days later, I volunteered at the first Symposia, featuring the late Dr. Cohen. The rest, as they say, is history.
That was over seven years ago. As I look back, I realize how much I learned about Down syndrome, and just how much more I am still to learn about it. I don’t claim to be an expert or to know what a parent goes through every day, but I know enough to make a difference. I like going to work knowing that at the end of the day, through awareness, PR, research, and hard work, all of us at Global make a difference. That ALL of us in the Down syndrome community make a difference. I am proud of the work we have done so far, knowing there is still SO much more to do.
I am proud to be part of this community, and for Sophia, Michael, Kenleigh, Beth, Gertie, Yadira, Lexie Grace, DeOndra, Tim, Alex, Karen and everyone I had been fortunate to know, happy World Down Syndrome Day.
Throughout the years, I have heard a lot of different personal interpretations of what Down syndrome means to folks. Although is unfair to describe it all in one word, when I think of Down syndrome, I think of the word INSPIRATIONAL. I am almost always in awe, despite the number of years at this job, of how unique, capable, funny, typical, people with Down syndrome are. If I hope to impart something meaningful to my own “typical” kids, is that everyone is different, everyone is special and everyone can be inspirational. And I owe this life lesson to my job.
Happy World Down Syndrome Day to all.