WhirlyQ

Trisomy 21 is more commonly known as Down syndrome. This genetic configuration is caused (usually) by an extra copy of the 21st chromosome. For unknown reasons, having this extra bit of material in ones genes creates the usual features of Down syndrome recognizable to most people.

Until the 1970s, most people born with Trisomy 21 were put into institutions where they lived out their lives. Since then, the opportunities for a person with T21 have expanded greatly. Babies with T21 are welcomed home to be raised by their parents in loving homes and to attend the neighborhood school with their siblings. People with T21 graduate from high school, have jobs, live with assistence in their own apartments… in short, people with Trisomy 21 have ordinary and full lives. People with Trisomy 21 are ordinary people with, as we like to say, a little something extra.

And yet….

And yet if you are lucky enough to know and love someone with Trisomy 21, you will know what I mean when I say this friend, brother, sister, child, grandchild is anything but ordinary. While it’s not true that people with T21 are “always happy” (like any kid, Davey can throw a first-rate tantrum and is as stubborn as they come), there is a certain pleasure in life they seem to radiate to all who take the time to know them.

We did not know Davey would have Down syndrome before he was born. We had no idea he would be critically ill, either. I am glad we didn’t know. Had I known, my pregnancy would have been colored by fear and by wrong-headed, rediculous stereotypes. Davey is certainly like a lot of other 5-year olds with Down syndrome. But he is also very much like his brother, Edward, in some ways, and very much like Jules in other ways, and he and Mae share a passion for the music. He is an integral member of our family - and I can’t imagine us any other way.

National Down Syndrome Society
National Association for Down Syndrome
Uno Mas! Down Syndrome Online
Riverbend Down Syndrome Parent Support
Band of Angels
People First Language