Down Syndrome: A Year of Grief and Joy

March 14, 2014— -- In one week from today it will be one year since I decided to become the mother of a child with Down syndrome.

It was March 21, 2013 –- World Down Syndrome Awareness Day. But I didn't know that. All I knew was I was 15 weeks pregnant, lying on a table, having an ultrasound and waiting for the tech to tell me what else was “wrong” with my baby.

The Diagnosis

Three weeks earlier, we got the call. It was a Friday night, about 9 p.m. The test had been two days earlier. I almost threw up as I answered the phone. Yes. Our baby had trisomy 21. Down syndrome? I asked out loud. My husband, Ryan, let out a noise I have never heard him make before or since –- something between a gasp and a bark.

The weeks that passed between the phone call and the 15-week ultrasound were the most painful of my life. There were no easy answers. There was no immediate agreement on how to proceed between us. I was furious, and devastated. Ryan asked over and over again, why us? We had a beautiful life, a wonderful marriage, a 17-month-old daughter, Addie, who we adored. Why us?

The weeks that followed were an endless cycle of sleepless nights and uneaten food. Frantic Internet research. Phone calls to Down syndrome clinics from conference rooms at work. Nights where one of us would wake up, only to find the other one crying in their sleep.

Hysterical phone calls with my mother and brothers. I asked them over and over, “What would you do?" To their credit, they never answered. Because in the end, it didn't matter what they would do. It only mattered what we would do.

And so back to the 15-week ultrasound. The baby was there, right there on the screen. They looked at every single thing they could, looking for all the health issues –- most commonly a heart problem -- that can be associated with Down syndrome and spotted in utero. There were none. “If we didn't already know,” the doctor said, “there would be no way to know.” The baby had Down syndrome, but he was otherwise healthy. An extra copy of the 21st chromosome. What did it mean? Nothing yet.

Slowly I began to let go of the image of myself as a person who would spend the rest of her life next to child in a hospital bed. I don’t even know where I got that image in the first place. That’s the reality of so, so few parents of kids with Down syndrome, including those whose children who do have one or more of the health issues associated with the syndrome. I had researched for hours on the lives of people with Down syndrome and that of their families and knew they were, by and large, happy. We had met with parents of kids with Down syndrome and had seen that happiness first hand. But his overall healthy outlook helped me accept this could be true for us, too.

And at some point, Ryan’s question changed from "Why us?" to "Why NOT us?" After all, we had beautiful life, a wonderful marriage, a daughter we adored and plenty more love to give. Who better than us?

Still, the months that passed were anything but easy. I broke down in the bathroom at work. I had panic attacks in the night. I had accepted that my child would have Down syndrome, decided there was nothing in the world that could change my love for him. I had loved him from the moment I knew I was pregnant with him. Did I love him unconditionally? I did. But still. The pain was there.