31 Days of CF: Learning to Be Courageous When Things Are Scary

From left, Winry and Cheyenne Sowder. Photo courtesy of Winry Sowder

Day 7 of 31

This is Cheyenne and Winry Sowder’s (@thetinyrose) story:

In 2016, at just 21 days old, my daughter, Winry, was finally diagnosed with cystic fibrosis after weeks of unanswered questions and worrying.

Cystic fibrosis has made our lives unpredictable in a variety of ways and is constantly teaching us new things, whether we like it or not. All that we’ve learned and experienced has shaped both of our lives.

One lesson is to look on the bright side of things as much as possible. As cliché as that might sound, laughing, joking, and living in each moment make a big difference. Winry has always been a happy child who loves to play and have as much fun as possible. All of her two-week tuneups and hospital stays have resulted in fun memories we created during difficult and stressful times. I hope she will continue to have the same outlook as she gets older.

I learned shortly after Winry’s diagnosis that I needed to be able to plan, schedule, and track everything continuously. But I also needed to go with the flow and accept last-minute changes. Things are always changing. New diagnoses pop up, and there is always some new vital thing we should be tracking. We called it the CF bingo card because we never knew what would come next. It seemed Winry was bound to get a bingo.

One of the most important things I’ve learned is to have courage, even in scary times.

I remember all the times I was scared of her feeding tube, of checking her blood sugar at home, and particularly of having to explain CF to an inquisitive child. At the end of the day, those things must get done, and I needed to learn to have the courage to do it all to keep her healthy. Looking back, all of those fears seem so small.

We’re grateful for the people we’ve met along the way, and for the unique experiences we’ve had. Hopefully, we’ll continue to learn how to live a life full of fun, no matter what comes our way.

Cystic Fibrosis News Today’s 31 Days of CF campaign will publish one story per day for Cystic Fibrosis Awareness Month in May. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofCF, or read the full series.