The Unpredictability of CF Taught Me How to Let Go

Giving up control was difficult for this columnist and CF mom

Jennifer Chamberlain avatar

by Jennifer Chamberlain |

Share this article:

Share article via email
A banner illustration depicting a woman holding her baby daughter at a beach.

“How is this possible? We did everything right!”

I couldn’t comprehend what my daughter Claire’s pulmonologist was telling me at her quarterly cystic fibrosis (CF) clinic visit. He explained that her most recent chest X-rays showed signs of disease progression. She was only 2 years old.

Up until that point, Claire, who was born with CF, had never caught so much as a cold. We worked tirelessly doing manual chest percussion therapy the first year of her life. We did breathing treatments every day like clockwork, never missing a single one.

The fact that we’d done everything in our power to keep Claire healthy made the news that much more difficult to process. I cried and questioned a lot. For the first time since my daughter was in the neonatal intensive care unit, I felt like CF was winning. It was beating us down, and there was nothing I could do about it.

But after a few days, that feeling of helplessness led to an epiphany: I was not in control anymore.

Recommended Reading
A banner illustration depicting a woman holding her baby daughter at a beach.

Exposing the Outside World to Our Family’s Cystic Fibrosis Journey

Learning to let go

That was terrifying for me. You see, I’ve always been a bit of a control freak. I thrive on organization and keeping things in line. I love planning and scheduling. Before our daughter, I thought that if I worked hard, was a good person, and did my best, everything would work out in the end. Now I know that, no matter what we do, sometimes we just can’t control the outcome. Cystic fibrosis is a testament to that.

Complying with a daily management and care routine makes it appear as though we have some degree of control over Claire’s disease. But the reality is that CF has a mind of its own. It affects every person and family differently.

As the pulmonologist told me on that fateful day, there’s no good explanation why the disease progresses more quickly in some people than in others, or why some respond better to medications than others. The only consistent part of CF is that it proves there’s a lot beyond our control.

Early in our journey, an older CF mother told me that soon after her daughter was diagnosed, she let go of thinking that adhering to treatments could alter her daughter’s outcome, and she handed her family’s CF journey over to her faith. At the time, I was so confused about how she could possibly feel that way. I never thought I’d reach the point of being comfortable with a loss of control.

I sometimes wonder if I was destined to be a cystic fibrosis mom for this very reason: to learn to be more comfortable with letting go. It’s a slow journey for me, involving baby steps both forward and backward. I still do everything possible to keep my daughter healthy. However, I now know that I cannot control every outcome. I cannot single-handedly stop this disease.

Because cystic fibrosis is often unpredictable, I’m forced to adapt to the feeling of constant uncertainty, and to expect the unexpected. It’s scary and hard. But I’m trying to live by one of my favorite sayings from microbiologist and mindfulness expert Jon Kabat-Zinn: “You can’t stop the waves, but you can learn to surf.”

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.


Leave a comment

Fill in the required fields to post. Your email address will not be published.

A Conversation With Rare Disease Advocates

Your CF Community

Visit the Cystic Fibrosis News Today forums to connect with others in the CF community.