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When the Life You Imagined Looks Different as the Parent of a Child With Cystic Fibrosis

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Someone once said that “the only constant in life is change.” How fitting for a week of unexpected news. A loved one is ill, and I’m once again reminded that health is not to be taken for granted. None of us knows what lies ahead, and our bodies, sleek machines though they may be, are not infallible. They never professed themselves to be. It’s we, in our arrogance, our busyness, who simply forgot.

Many of us parents know this well. As we dream of our future families, the warm bundles of love that we’ll cradle in our arms, we don’t typically envision pressing medical needs. We pass the local children’s hospital in just that – passing – too busy navigating our playlist to give it more than a second thought. We see fundraisers on late-night TV and videos of friends-of-friends on social media and experience a sharp intake of breath. Followed by the quick relief that it’s not us. Not our children. Not the loves of our lives.

Until it is.

Eight years ago, I was entering my final trimester. I was knee-deep in pink onesies and woke in the night overwhelmed by the myriad of nursery color choices. Were the purple walls good enough, or should I give myself an extra kick and make that teal happen? My husband and I landed on a name. A beautiful, classic name that honored a beloved family member and was music to our ears. Our baby’s heartbeat was normal, her growth rate expected. We joked how our second time around, nothing could throw us for a loop.

Five days after our daughter was born, the pediatrician alerted us to an abnormal blood test result. Shortly after, our little girl was diagnosed with cystic fibrosis (CF).







Our daughter is a miracle. She tells the wildest stories, and when she laughs, her face opens up like the sky. She is a gentle friend and a sometimes hell-raiser. She runs the soccer field like there’s no tomorrow, feeling bashful when she kicks the team’s first goal of the season. Before I’ve finished flipping the jigsaw pieces over, her puzzle’s almost finished. She dresses in my clothing, draws whiskers on her face, and pretends to be a high-heeled cat lady who teaches gym class. Class starts at 10 p.m. sharp, just after bedtime.

Science and medicine have progressed big time since our daughter was born. Any day now, we expect the FDA to approve a game-changing medication that has done wonders for adolescents and adults with CF. The day our daughter takes that first pill will be the third happiest day of my life. It will be the start of a new path in her healthcare journey. A hopeful path. One that marches toward the sun.

To all the moms and dads out there who are on a similar ride, know this. There is no one right way to feel. Devotion, ferocity, protectiveness, uncertainty, fear, persistence, hope. All have a place on your journey, and it’s OK if your feelings are tangled up together or if they swing from one side of the universe to the next on any given day. Our bodies aren’t machines, and neither are our minds.

You are doing the best you can. Your heart swells with a love you never knew you could feel. You advocate with a strength you never knew you had. You hope beyond your wildest of dreams.

And that life you had envisioned once upon a time?

Sometimes, when you think of it, you’re sad. You may grieve what’s not to be.

Sometimes, when you think of it, you laugh. What Pinterest world were you living in?

But mostly, when you think of it, you smile. For this life — this love — this gift — is sweeter than you’d ever imagined.

Originally published: July 6, 2021
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