How I found my voice as a cystic fibrosis parent
My journey to writing and speaking about the disease that changed our lives
When my daughter, Claire, was in the neonatal intensive care unit, I was lead counsel on a case that had made its way to federal court. I prepared for the case at Claire’s bedside between breaks of the nurses cycling in and PICC lines beeping around me. Somehow I pulled off an oral argument that won the case for me. It was a huge career milestone.
So how was I able to perform as an attorney under such stressful circumstances, yet could barely talk about Claire’s cystic fibrosis (CF) at that time? Well, it’s complicated.
Processing in privacy
For me, in the beginning, talking about Claire’s disease made it seem more real. I wouldn’t necessarily call it an avoidance tactic, as I was still adhering to her regimen of care. I wasn’t blissfully unaware that she had CF; in fact, we’d already seen the ugly side of it by the time she was days old. Everything was very real for me.
My reticence to talk was more because I didn’t want the disease to be real to others. I never wanted Claire to be known as the “sick kid.” It was important for me to establish who she was as a person before I let others into our world.
Beyond that, I was healing both physically and mentally from a traumatic birth and postnatal experience while every day learning new things about Claire’s care regimen. My brain almost felt like it was beyond capacity as it tried to balance all of the newness of having a child with a rare disease atop my professional workload. I didn’t have space to mentally prepare for or handle the emotions that came with sharing her diagnosis with others.
Some of my problem was a sense of shame and guilt. Those feelings started when we found out, during my pregnancy, that her father and I were CF carriers. I spent countless nights lying awake, wondering how we didn’t know about this important detail of our genetics. The guilt intensified when she was born and not only inherited cystic fibrosis, but also spent the first two months of her life hospitalized as a result.
I feared that if we shared her diagnosis, we’d be met with misunderstanding. Maybe others would blame us for her cystic fibrosis, judging us from a distance.
Finding an outlet
These feelings are a big reason I began therapy around Claire’s first birthday. While searching for outlets to heal, my therapist encouraged me to spend time expressing myself. She explained that I’d suppressed so many emotions during my pregnancy and first year of Claire’s life that I needed a way to process them all.
I’d always loved writing; it was the original reason I went to law school. It seemed like a natural progression to write about my experience raising a child with a rare disease.
Once I sat down to write about Claire’s cystic fibrosis, it felt cathartic. And when I started sharing on social media, I found other cystic fibrosis parents, who could relate to my words more than anyone. I found an outlet to not just raise awareness, but also make the cystic fibrosis caregiving journey less lonely.
Talking about Claire’s CF journey was a little different. My first speaking engagement was at an event for the Cystic Fibrosis Foundation (CFF). I was encouraged to tell our story candidly, just as I did in my writing. But when it came time to speak in front of strangers, I was so nervous. More nervous than I’ve ever been for any professional endeavor.
I didn’t think I’d get emotional, but I ended up crying in front of a room full of strangers. It was a vulnerable and powerful moment for me.
As I drove home from the event, our local CFF chapter representative called and told me the audience was so moved by my speech that multiple members had volunteered for the next fundraising event. It felt really good to know my words were able to influence others to act.
I still get butterflies talking to others about Claire’s CF and all that it entails. Writing about it helps me heal. And now I recognize how important it is for others to hear our story. That’s what keeps me wanting to be a voice for this community.
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.