Why I No Longer Worry About the Future of My Daughter With Down Syndrome

I don’t know when it happened, but it happened. I went from worrying about my daughter’s future to wondering about it.

When Willow has born, Down syndrome was foreign to me. I had no idea how her extra chromosome would affect our lives. The hospital gave me a book, but that just added to the mystery. It also fueled fear. The book’s pages were full of possibilities but no certainties. There were pictures, percentages and plenty of stories but no guarantees. And that, my friends, is scary.

For the first several months of Willow’s life, worry was my constant companion. That’s because Down syndrome wasn’t the only diagnosis I was digesting. Willow was also born with several heart defects. The idea that my youngest daughter had holes in her heart was enough to rip a hole in mine. I grew anxious every time she hiccuped. I held my breath every time she cried. Weekly weight checks made me question if she’d make it to surgery. Her limp body was an ever-present reminder of not only low muscle tone but a weak heart. Hers and mine.

Willow eventually did make it to surgery. It turned into an emergency situation at just one month of age. I believe by God’s grace, she survived. But, unfortunately, so did some of the worry. Not so much regarding her heart but other things. And boy, were there other things. In the first 15 months of Willow’s life, she faced torticollis, failed hearing tests, skin infections, a leukemia scare, a bone marrow draw, emergency hernia surgery and another unexpected diagnosis of chronic benign neutropenia. The list of things to worry about was never ending. It still is. But somewhere between then and now, the worry waned.

Maybe I’ve grown numb, but I’d rather think of it as answered prayer. That’s because ever since Willow was born, I’ve been telling God I’m giving it all to Him. I’m giving Him my worry, my fear and my hopes. And somewhere along the way, I believe he took them. I have no idea when, but I’m convinced that He did, because this week, I caught myself dreaming. And then it hit me.

Instead of worrying about when Willow will walk, I now wonder when I’ll be able to sign her up for dance class. Will she be into ballet or jazz? No, I bet she’ll be a hip-hop girl.

Instead of worrying whether Willow’s heart will require a second surgery, I now wonder how I can make my heart more like hers. Her love is pure and undiscriminating, the kind I read about in the Bible.

Instead of worrying about how her chronic neutropenia might interrupt life, I now wonder how best to live ours. There are so many things I want Willow to experience.

Instead of worrying about leukemia, sleep apnea, cataracts or all the other risks associated with Down syndrome, I now wonder what risks Willow will take as she grows older. I’m finding out there are so many worth taking. So many.

I’ve wasted countless moments worrying about the list of things that could happen to Willow. I’ve even caught myself anticipating problems. But you know what? It didn’t change a thing. Scary things happen. Me worrying about them or anticipating them only makes them scarier. What’s worse? It sets a horrible example for my kids, especially Willow.

After all, I want this girl to live, to love and not worry about the waves but ride them.

Follow this journey on The Mighty Willow.

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