The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
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Bye Bye Ceiling
Black Jack on Drums
Black Jack on Drums
Bye Bye Ceiling

When I was 30, I found out prenatally that my child had Down syndrome. I did not know what Down syndrome was. Doctors gave me clinical and mostly outdated literature along with books on how to grieve the loss of my child. As I was told my baby had no other health problems, I decided to move forward with the pregnancy. It was an emotional time. I knew I was choosing the road less traveled and I learned and began to embrace this different kind of journey. Not long after my difficult decision, a new set of tests revealed that my unborn child had a hole in his heart that would require surgery soon after his birth. My theory in moving forward with the pregnancy was mostly based on that my child's "syndrome" was really a natural variation, occurring equally in all populations throughout history. Who was I to interfere with nature? My healthy baby would otherwise live, I thought. With the news of my child's heart issue, I quickly changed my philosophy. I now had to save this beautiful little life that would not otherwise survive to 1 year old. I learned all of this information before ever finding out that my baby was a boy. Down syndrome, heart defects and all the tedious medical terminology suddenly fell away. I was having a son. The day Jack was born was the happiest in my life. He arrived exactly on his due date. My daughter and I came up with the nickname "Black Jack" for him. We decided his extra 21st chromosome was good luck. I can honestly say I would not change the fact that Black Jack has Down syndrome. His uniqueness has become one of the most precious and life affirming gifts we have known. Choosing Jack was, for me, about staying open to the mysteries of the world and of the heart. My belief in a universe that is magical, beautiful and fundamentally good, was proven the moment I saw my son's face. Some of the most touching things about Jack, who now attends "typical" Kindergarten, are the simple and incredible things he says. We call these words, phrases and songs Jack's "poetry." Before he knew the concept or word for "outside," for example, when we left the house he would wave to the sky and say "Bye Bye Ceiling!" Later we named our chopped off, convertible Range Rover, The BBC, for Bye Bye Ceiling. Soon warm days will come to Oregon and we will celebrate the sun in the BBC again. We will say "Bye Bye Ceiling" with great joy, arms reaching up toward the limitless sky. When we say this, it is a reminder of how our lucky Black Jack has taught us to see his potential, as well as to provide perspective on our own. He has shown us to stay open to the magic in life in all its rare, strange and beautiful variations.




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