I know you’re afraid. My parents were afraid, too. My mom left a college biology class crying; the lesson on genetics included the life expectancy of a child with cystic fibrosis. There’s an old home video of her talking to Baby Bradley before I was diagnosed. I was malnourished and couldn’t stop crying. She told me she was worried.
She probably was wondering if my whole life would be as tearful as my infancy. She may have wondered if I would hate my life. Maybe you wonder the same about your child.
I once stood on a balcony with my history professor and chatted about my disease with him. He had cancer, but was more worried about me than himself. (Ironically, he was smoking a cigarette at the time.) He took a long drag, looked me up and down, and with squinted eyes he said, “What a shame, that someone so young should be so sick.”
I left that balcony reflecting on what I had: love, a home in the paradise of Hawaii, a job I was passionate about, a wealth of hilarious life stories, and a longer lifespan than patients born before my time.
I didn’t feel sorry for myself. I still don’t. Parent, I have cystic fibrosis and I love my life.
Yes, there will be sleepless nights of weeping for you and your child. But there also will be times of rejoicing in victories. Perhaps, there will be a time you can celebrate a cure.
One day, this all could be just a bad memory. Be excited for the newest drug developments. Don’t be afraid to be hopeful. There are myriad major game-changing drugs in development. Something will work.
Your child could grow up to be cured while retaining all the lessons they’ve learned, and all the values they’ve picked up over their years of fighting. People with CF are some of the toughest, most optimistic people I’ve met — the children and adults. They often are wise beyond their years and have so much potential. We struggle, but we come out strong.
Take care of yourself, too. The struggle a parent or guardian undergoes to keep their child safe is under-appreciated. Even more CF caregiver parents suffer from anxiety than patients with CF.
Don’t look too far ahead if you aren’t doing so optimistically. Focus on the now. Focus on loving your child where they are, rather than worrying about where they are going.
Create a bond between you and your child that cannot be broken by the medical trials you endure. Be a team. Celebrate with your child when they want to celebrate, and mourn with them when they want to mourn. Take time to ask them how they are doing and how you can help. Advocate for them, take their perspective to heart, and strive to be someone they can trust.
Talk to patients and parents who are fighting and hopeful. Ignore the pessimistic, jaded talk. Don’t read the sad stories and think the same will happen to your child. We all are different, there are far too many variables to account for. Choose positivity.
Your child will have fun and laughter; they might find love and passions. They might have a family, become master musicians or veterinarians, run your business one day, or have an unquenchable thirst for learning. Maybe they’ll even write about how much they love their life one day.
I’m sitting across from my girlfriend of six years, dreaming of marriage and planning career goals. I’m on a road trip across the Southwest. I’ve seen some of the most awe-inspiring sights in the past few days: Massive canyons that remind me of how small my problems are and how much there is to life outside of the hospital. The sky is breathtakingly beautiful tonight.
I have cystic fibrosis. And I love my life.
Aug. 6, 2017