Down Syndrome: A Year of Grief and Joy

PHOTO: William Brown at five months old.
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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.

The Birth

William Michael Brown was born on Aug. 31, 2013. He was –- and is -– beautiful. I had thought long and hard during my pregnancy about our first meeting. I wanted to say something profound. Something amazing. Ryan brought him to me and all I could muster up, was “I love you. I love you.”

That day passed in a fog -– there were visitors and balloons and doctors and nurses. There was Will. He met his big sister, Addie. He met his grandparents and cousins and aunts and uncles. There was joy. Finally, joy.

That night, I let the nurses take him to the nursery. I hadn’t slept in about 36 hours. I don’t know how long I slept before I woke in a panic. Ryan was sleeping on the pull-out next to me. I could barely breathe. I had to see Will. I had just had surgery but got out of the bed and hobbled to the nurses’ station and asked to see him. They brought him to me and I sat in a chair they pulled over in the hall and I broke down. I sobbed and sobbed while I held him close. The nurses thought I was sad that he had Down syndrome. No. They were tears of regret and simultaneously, relief to have him finally in my arms. I asked for his forgiveness for all the doubt I had those weeks. The nights I was so scared I wasn’t good enough or strong enough. Those weeks I didn’t think I could be his mother.

Two days later, we put him in his stroller, left the hospital and walked home. Addie was there waiting for her brother with hugs and kisses. He had brought her a tricycle, after all. We put him to sleep in his bassinet and I felt complete.

At some point that day, it occurred to us that we had thought less about Down syndrome in the last 48 hours than we had since that night in March. Strange how something that had consumed nearly every minute of every day all of a sudden felt unimportant somehow. We decided Will’s life –- and ours, and Addie’s -– would not be defined by Down syndrome. It would merely be just one part of our lives together.

Today

Will is now 6 months old. He has brought me more joy in his short life than I ever thought possible. And despite his extra chromosome, our life remains largely the same. We still travel. We laugh more than ever. We take him and his wonderful, amazing older sister Addie to the park, the zoo, birthday parties and playdates. We eat pizza every Friday. We go out alone, and with friends.

Our life is better now than it was before. His toothless smile and his baby hugs make it that way. If I could have known then how he would stare at me, smile when I picked him up each morning, touch my face every time I spoke to him, quiet his cries every time I sang, I could have saved myself an incredible amount of heartache. But I couldn’t have known that then because I didn’t yet know him.

Yes, I think about Down syndrome often. Right now though, it doesn’t mean a lot. I take Will to see specialists to make sure he stays as healthy as he is today. He sees therapists weekly to be sure he meets each milestone. Of course I would take those extras away if I could, if only to have more time to relax. But being his advocate, being his caretaker and being his appointment-maker is an honor.

As is being his mother.

And one day, when William reads this, he will know that there was a time I was very scared to be his mom. For that I will always be sorry. But he’ll also know that even though I was scared, my love for him was stronger than the fear. And that he has brought me nothing but pride and joy. And that I can’t wait to spend our life together, the four of us.

Genevieve Shaw Brown is the Travel & Lifestyle editor at ABC News. You can read her work, which has nothing to do with her personal life or Down syndrome, here.

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