Updated: May 9, 2020
The extra chromosome was intricately wound through my son’s body more than a
million times, as though it was not there by accident but placed there intentionally. Andrew is one-years-old today and has Down syndrome. Over the past 18 months, I have witnessed his strength, resilience, and beautiful smile. He brings immeasurable joy to me, my husband, and his older siblings. I admit it: I am in love with my son and his extra, magical chromosome.
Why do I refer to his extra chromosome as magical?
According to the Merriam-Webster Dictionary, “magic” is defined as “an extraordinary power or influence seemingly from a supernatural source.” The full or partial extra chromosome provides “extraordinary power” to those living with Down syndrome. John Franklin Stephens is one example of a such a man living with Down syndrome who is doing extraordinary things. In his speech to the United Nations that went viral, he explains that the extra chromosome is a “blueprint for medical research in areas that include soft tissue cancer, heart disease, immune system disorders, and Alzheimer’s Disease.”
But the extra chromosome is so much more.
According to the National Down Syndrome Society (NDSS,) approximately one in every 700 babies in the United States is born with Down syndrome—about 6,000 each year—trisomy accounts for 95% of cases, translocation accounts for 4%, and mosaicism accounts for 1 percent.
Those living with Down syndrome experience the same emotions as their counterparts; they can be happy, sad, frustrated and scared. However, they are known for radiating joy. People who have Down syndrome can be married, live independently, attend school with their counterparts, be employed in meaningful jobs, and can contribute to their communities. Recently, we have seen the first Gerber baby and the first D.C. lobbyist with Down syndrome, as well as many successful models.
Many people have told me that my son is lucky to have me as his mother. But I feel quite the opposite; I’m the lucky one. He has greatly enriched the lives of those around him.
Over the past year, Andrew has endured several health challenges. He had surgery for Hirschsprung’s disease when he was 15 days old and was hospitalized when he was six months old for complications with the flu. For the past 18 months, I have driven him, almost daily, to various doctors’ appointments. Managing his appointments, healthcare, and development has been exhausting. But I wouldn’t trade it for the world. His smile and big blue eyes fill my heart with love and renew my energy to face the obstacles ahead, even as we rejoice in every triumph. Looking back over the past 18 months, I am thankful for how far we have come.
March 21 st may be Down Syndrome Awareness Day, but in my world, we are aware of Down syndrome 365 days a year. Fortunately, a plethora of resources are available for adults and children living with Down syndrome, including:
The Global Down Syndrome Foundation is a non-profit organization that is “dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education, and advocacy.”
The Linda Crnic Institute for Down Syndrome which is dedicated solely to researching Down syndrome.
Dr. Fran Hickey with the Sie Center for Down Syndrome in Denver, Colorado, one of the leading pediatricians for children with Down syndrome.
The National Down Syndrome Society (NDSS), which has many local support groups across the country that provide playgroups, life skills classes, education, and resources for families.
At first, after I was given a prenatal diagnosis of Down syndrome by my doctor, I
felt overwhelmed and confused. So, I turned to Google, searching “Down syndrome,” where I thankfully stumbled upon Mr. Stephens’ UN speech. From that point on, I was inspired, and I continue to be inspired by my son every single day.
We all walk our own path in life. Individuals living with Down syndrome bring their magical chromosome along with them on their journeys and are gifts to the rest of us. Their beautiful smiles and compassion can, and will, change the world—just like my son Andrew is already changing our world.
Erin Thielman is a married mother of three and a veteran of the Air Force, who
has worked as a project manager, middle school religion teacher, public
speaker, and freelance writer. Visit her website at www.thinkingcatholic.net.