Step In and Step Up

We received this wonderful story as part of a holiday update from the Blott family, and we asked their permission to share it with you.

4:30am, March 6, 2011. Conrad Robert Allan Blott was born in Toronto. Moments after his birth, the doctor approached us and when the words “we think your son has Down Syndrome” were said, we knew our lives had been changed. Our prenatal testing for Down Syndrome had all come back negative (1 in 55,000) which contributed to our shock.

Down Syndrome, or Trisomy 21 as it is also known, is a fluke occurrence. When a baby is first developing and cells are dividing and multiplying, an extra copy of the 21st chromosome is copied. So instead of having 46 chromosomes, someone with Down Syndrome has 47, with 3 copies of the 21st chromosome instead of 2. As science advances and we learn more about the human genome and what specific genes sit on the 21st chromosome, researchers are understanding Down Syndrome more and more.

As is fairly common in children with Trisomy 21, Conrad had difficulty feeding initially and problems with his heart. He was admitted to the NICU for the next 5 weeks, and life for us was a blur as we commuted to the hospital and raw emotion and information overload took over. People react differently to situations. To my husband Andrew, Conrad was just Conrad. Our little miracle guy. And a blessing. Andrew was seeing his world with his glass half full. On day 2 he said to me, “Karen, we’ve always wanted to have a kid in the Olympics. Do you know how much more wonderful it will be to have a kid in the Special Olympics?”

My mom, who helped us so much, literally moved into our house and helped make sure life went on a normally as possible during this time. Our family and friends embraced us in a way we hadn’t imagined possible. And in this we learned a valuable lesson. When someone you know is having a tough time – for whatever reason – step in and step up. It doesn’t matter how close you have been, your support, in whatever form, might just be what that person needs.

I didn’t respond particularly well during this time. For all the wrong reasons, I worried about “what other people would think” and feared the future. As a type A, perfectionist type, over the next few months I had to unlearn everything that I thought was perfect, and I had to relearn that a whole new world of perfect exists. Conrad has forever changed me for the better.

As a result of the experiences we’ve had, we’ve put in motion the development of two non-profit initiatives. Hands Held will help support families at the time of a difficult diagnosis (Down Syndrome amongst others) through those first critical 100 days, through education and a peer support network. Circle 21 will support the Down Syndrome community with a strong online presence, fundraising initiatives, community relations, medical clinics, education, employment, government lobbying and more.