Courtesy Gregg Rogers
Gregg Rogers is an English professor at Pennsylvania State University. He spent 10 years as a writer, reporter and editor in New York and Los Angeles. Rogers and his wife host a Web site for other families in their area who have children with Down syndrome:
Gregg Rogers is an English professor at Pennsylvania State University. He spent 10 years as a writer, reporter and editor in New York and Los Angeles. Rogers and his wife host a Web site for other families in their area who have children with Down syndrome: Courtesy Gregg Rogers
Courtesy Gregg Rogers
Three-year-old Genevieve Rogers has two older sisters and a younger brother. Her first full sentence was, "What's up with that?"
Three-year-old Genevieve Rogers has two older sisters and a younger brother. Her first full sentence was, "What's up with that?" Courtesy Gregg Rogers
"It is trisomy 21. It is Down syndrome."
Beyond those words I heard nothing, sitting in the obstetrician's office. The doctor was talking about my unborn daughter, and the results of an amniocentesis. I know there were words after that statement, but I don't remember them. I do remember returning home with my wife and crying on the sofa.
I distinctly remember saying, "I don't want this." I didn't want this situation. I didn't want this responsibility. I didn't want to become one of those parents — the parents of a child with a disability.
People told me, "If anyone can handle it, you can."
"Easy for you to say," I thought.
"God never gives you more than you can handle," they reassured me.
"Really? Then why do people have nervous breakdowns?"
"We'll help however we can," they said.
"Fine," I thought. "You have the kid with the developmental delay, and I'll help you out."
For months I was terrified. My wife, Lucy, and I now refer to the period of time leading up to my daughter's birth as "The Pit." We barely spoke to each other because we didn't know what to say. We simply suffered through each day, together, but feeling terribly alone. And then Genevieve was born.
She spent her first eight days in the neonatal intensive care unit at a regional medical center. On each of those eight days I made the 150-mile round trip to see her, because she was my daughter. I sat in a surgical gown in intensive care, holding her in a tangle of tubes and wires, singing the same songs I had sung to other daughters.
On the ninth day, she came home, and I began to realize that my feelings of fear and anxiety had changed in a way that no prenatal screening could ever have predicted.
I now believe Genevieve is here for everyone. I believe Genevieve is taking over the world, one heart at a time — beginning with mine. I believe that what was once our perceived damnation has now become our unexpected salvation.
Genevieve recently turned 3 and is doing very well for herself. She runs and climbs on everything and loves to wrestle with her two older sisters and her younger brother. She doesn't have a lot of spoken words yet, although her first full sentence turned out to be, "What's up with that?"
She does have over 100 signs that allow her to ask for strawberries, pizza or ice cream, or tell us when she wants to sleep, or play on her computer. She goes to a regular preschool three days a week and seems to know more people around town than I do. I laugh every day because of Genevieve.
On my right wrist, I wear a simple silver chain with three little beads on it. I used to say the three beads signified the third chromosome that results in trisomy 21, Down syndrome. Now when I look at those beads, they simply remind me that I don't ever know as much as I think I do, but I'm always capable of more than I think I am.
Independently produced for All Things Considered by Jay Allison and Dan Gediman with John Gregory and Viki Merrick.