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Learning to Live with Cystic Fibrosis with Joy

Gillian Mocek was diagnosed with cystic fibrosis when she was 10 months old, and doctors told her parents that she might live to age 18. Today, she is 27 years old, married, and a mother.

“I have to learn to integrate CF into every aspect of my life,” she shares. “Having a struggle or a challenge can be an opportunity to be strengthened.”

Video Transcript

Gillian Mocek: I never expected the life that I have. I certainly hoped for it, and dreamed of it, but I didn’t dare expect it. Which I think was good because it’s led me to make choices in my life that were, I think, little bolder, and I’m kind of soaking up those moments.

So, today we’re in downtown Louisville — we’re at Slugger Stadium, and we’re here for the Great Strides CF walk. Cystic fibrosis is a genetic disease that affects the whole body. I’m creating more thick and sticky mucus. It’s like a slow stealing of lung function, and of lung capacity, really.

I was diagnosed at 10 months, and my parents were told I might live to 18. And today I am 27 — I’m a mom. With a toddler, it’s like a water slide, when you’re expecting a lazy river. I mean, “juggle” is the best word for it. I spend the most time each day doing the breathing treatments, so that’s 30 minutes, three times a day, each session. So, the vest — the idea is that it shakes loose the mucus in my lungs, and helps me to cough it out. I’m just multitasking. I have to learn to integrate CF into every aspect of my life. Obviously, I’m fighting for my own life, but theirs as well — for them to have a wife and a mom.

Having a struggle and a challenge can be an opportunity to be strengthened. The moments that I have struggled the most, and sort of been angry with God, and scared for my life, have brought me the closest to Him. We sort of peel back the curtains and look at the scariest thing, which oftentimes is like death and suffering. And then we can live! We see it for what it is. And I can’t change the cards that I’ve been dealt, but I get to choose how I play the game, and I get to play it with joy.

Child: Here we go down.

Gillian: It is hard as a parent to not just help him do these things, but it’s so good for their confidence. I mean, to physically know your body, like, “Okay, I feel safe,” or “No, I don’t. I’m going to stop.”

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