October is National Down Syndrome Awareness Month. A month to celebrate the abilities of people with Down syndrome.
Ironically, it was in October that I first became aware of Down syndrome. Pregnant with twins, I asked my Mom to come and stay with us until I delivered. She agreed to come and said there was one thing she did not want to miss while she was with us. She wanted to be sure to watch the TV show “Life Goes On”, about a typical American family who had a son with Down syndrome. I thought this was an odd request but, of course, I agreed, and each week, as we waited for the babies to arrive, we watched this show together. “Life Goes On” was the first television series to have a major character with Down syndrome – Corky, played by Chris Burke, who himself has Down syndrome in real life. Chris’s character was showing us and the world that people with Down syndrome were not so different than the rest of us. Corky had needs, desires and feelings just like everyone else. And little did we know that this show was preparing us for the future.
On December 14th, 1992, Emily and Jessica were born. They were both big, beautiful, healthy babies, yet Jessica seemed to have some of the classic physical attributes of Down syndrome (a genetic disorder, first described by John Langdon Down, hence the name Down syndrome). The doctors thought we should have a blood test to determine if this was the case. We waited seven agonizing days for the official word… yes, she was born with Trisomy 21, an extra tail on the 21st chromosome.
A very kind doctor broke the news to us, telling us that we were very fortunate that Jessica was healthy and did not have a heart condition (as 50% of the Down’s babies do). He told us that we had done nothing wrong, that the extra chromosome occurs by chance and occurs in about one per 700 babies born each year. He held my hand and told me that we would be fine and that it just may take her a little longer to do things. He said that the world would be a better place if everyone had a little Down syndrome in them and that we should take her home, love her and treat her like everyone else. “Oh, and by the way, don’t read anything written before 1990!”, he added.
So, with that we went home, cried together, but not for long as we had to pick ourselves up and begin our adventure of raising our twin daughters, our 2 1/2 year old and our two older children.
Her sisters and brother never seemed to notice any difference in Jessica. Yes, her speech was a little funny and she needed more time to do everyday things but mostly she was fun loving, courageous and lovable. She was determined to keep up with her siblings and they always included her in everything they did. I think she made all of us more compassionate, more patient, more accepting.
Through Jessica we have met people with a wide range of abilities and have seen first hand how alike we all are. We have also met many amazing parents, service providers and people who help, support and advocate, not only Jessica, but for others with disabilities in the community.
Brave folks like Chris Burke, his supportive parents and others like them, have made Jessica’s life a little easier. All of the help and support she has received has contributed to her becoming a social, active and contributing member of the community. She has shown us that she is capable of learning and doing pretty much anything she puts her mind to. She is a gold medalist swimmer with the Special Olympics, a dancer and a budding actress. With yoga teachers as parents, we are very proud that she is the first ever yoga teacher with Down syndrome! She is also an accomplished artist, creating knitted scarves and hats, ceramics, hand made note cards. spa pillows and eye pillows. She is being coached to start her own micro business where she is selling her art and yoga related products online. JessicaParsonsYoga.com
We are happy to support the National Down Syndrome Society (NDSS) and Down Syndrome Awareness Month. Here folks like Chris Burke (who is now the NDSS’s Goodwill Ambassador), Jessica Parsons and the many other capable people with Down syndrome are recognized, not for their disabilities , but for their abilities. We hope that Jessica can be an inspiration to parents who have newborns with Down syndrome, making it even easier for the next generation to thrive and to assure parents that, indeed, life goes on.
Contributed by Sue Anne Parsons