Down Syndrome: A Year of Grief and Joy

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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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