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Advice to parents of children with CF: What I’d say if I could go back…
I clearly remember something that happened when I was 19 years old. I was sitting in the hospital lobby, waiting for my brother to pull the car around to the front doors. I had just left my last clinic appointment at my pediatric CF center.
As I sat there waiting, I looked around the lobby and saw a woman sitting nearby with her baby. In her had was a binder labeled “What Comes After Diagnosis.” She was one the phone, sobbing, and I overheard her say, “It’s something called cystic fibrosis. I don’t know… I think it’s bad.”
I knew her baby had just been diagnosed. I could see the pain in her eyes and hear the fear and panic in her voice. Part of me wanted to reach out and comfort her. But I was young, not very confident or sure of myself yet, so I sat there silently.
I’ve thought about that day probably 1,000 times since then. I wish I had been brave enough to approach her. I wish I’d have had the confidence to comfort her and tell her that everything was going to be okay.
Since then, I’ve made it a little bit of a mission to spread my message, my story. Which is that, yes, CF is hard and scary. It is by no means an easy thing. But there is so, so, so much hope! We can (and do) live absolutely beautiful and fulfilling lives despite the challenges that CF brings. The face of this disease has completely changed in recent years and there are so many new treatments and medications available. I firmly believe that parents of children with CF have every reason to be full of hope!
What advice or words of encouragement would you give to families facing a CF diagnosis?
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