Happy World Down Syndrome Day!

by Deborah Minner

March 21st is World Down Syndrome Day, chosen because the date 3-21 is synonymous with the genetic condition that causes Down Syndrome- 3 sets of the 21st chromosome.

People around the world are doing different things to spread awareness about Down syndrome today. I tried to do some advocating in my community by initiating a Dress UP for Down syndrome day. I made posters encouraging people to wear blue & yellow today and make a donation to the Down Syndrome Society of Wichita. If they made a donation of any amount, they got a button that says "I'm Dressed UP for Down syndrome" to wear today. The donations are going to be used to buy copies of the book Gifts: Mothers Reflect on How Children with Down Syndrome Enrich their Lives. These books will be donated to the OB/GYNs, PEDs, hospitals and libraries in my area.

Down syndrome was something I knew very little about before Sean was born. In fact, when I was told that he probably had Down syndrome, the doctor asked me if I knew what that meant. The only thing I could think of was Corky Sherwood from Life Goes On. I couldn't mesh in my head how my baby was going to "change" to look like Corky when he grew up instead of like my family. I thought people with Down syndrome all looked like Corky Sherwood and not like their family. Seeing photos of other kids and hearing about what they did, how the played, what they liked made me realize that not all people with Down syndrome are the same. Sean has 23 chromosomes like me, 23 chromosomes like Doug and only 1 chromosome that is different than us. Once I understood that, I was able to connect with him and stop feeling like someone had told me I'd given birth to someone so alien to me.

I really hope that the Gifts book is available to huge numbers of doctors, therapists, nurses, parents, politicians, family planning groups and the general public. It is a beautiful book that really helps bring understanding to what life is like with a child with Down syndrome. I feel very lucky to be included in it and I hope that our story helps someone.

Today I feel really blessed to have Sean in my life; he brings me so much joy. His smile lights up a room, his hugs warm your soul, and his eyes are a mirror to God. He and I will continue to look forward to what the world has in store for us and face the challenges that come our way together.