Making Lifelong Friendships With Other Moms of Kids With CF

A chance meeting at a CF conference 12 years ago gave me one of the most valuable gifts: my CF Mama friend group. Since then, we’ve invested time in our friendship and supported each other through the laughs and the tears.

Sept. 16, 2022 | 5 min read
Margarete Cassalina
Margarete Cassalina
Margarete smiling with her friends in a selfie photo.

“In a word or sentence, what does our annual CF Mama trip mean to you?” I texted.

In less than five minutes, my phone lit up with their responses.

“Rejuvenating. Ladies, you always bring me back to life.”

“Therapy. Sisterhood.”

“Friendship. Love, laughter, tears, cheers, and talks.”

“Grounded. Being together grounds me back into who I am despite the crazy in life.”

Twelve years ago, the five of us from different states met at the Cystic Fibrosis Foundation’s Volunteer Leadership Conference (VLC) in Washington, D.C. Like most people who attend VLC, we wanted to do all we could to find a cure for those living with cystic fibrosis, namely, our children. Throughout the conference, we kept running into each other, watching the breakout sessions, passing each other in the halls, or finding ourselves in elevators together. We’d take each opportunity to share our stories and could see that familiar CF mama journey in each other’s faces. When the conference ended, we unanimously agreed to spend more time together.

“We should all go on a vacation!” one of us said.

We meant well and wanted to go, but we also knew that the reality of life, jobs, and the overwhelming responsibilities of being moms to kids with a life-threatening illness would keep those vacation plans at bay.

We exchanged numbers, became friends on social media, and promised to stay in touch.

We did.

Not long after the conference, we realized that if we would stop at nothing to raise money and awareness for CF, why should this be any different?

We understood that taking a moment to recharge from a stressful life is crucial to being our best for those we love. How could we be our best for them when we wouldn’t make the time for ourselves?

We recognized that friendship and a kindred understanding within the CF community are essential, and so did our families.

We had answered how far we’d go for a cure (until it’s done), and now we had to ask ourselves how far we would go for this friendship. We promised we’d figure it out, and we did.

Within a year, we set our plans, and that first trip bonded us instantly. We talked about hospitals, medications, and how it felt to be a mom with kids born with cystic fibrosis. We connected over parallel lives, fears, and joys. We cried knowing our families could never be together like we were. Our friendship is built with a language foreign to most and a connection few can understand. Our conversations are raw and vulnerable and often go until the early morning. Nothing is off limits, so our time fills with laughter so hard our bellies hurt and tears so fierce our hearts do.

All smiles at our annual "CF Mamas" trip.
All smiles at our annual "CF Mamas" trip.

Our families have bonded as well. Even though I still haven’t met all ‘our kids’ in person, I haven’t missed an important moment in their lives. Our commitment to our friendship is year-round. We talk almost daily via our text group, or a social media app called Marco Polo, and we share everything just as we do on our annual CF Mama trips.

That trip is a family affair for sure. We never ‘find’ the time; collectively, we make the time. Every year, something almost prevents one of us from attending. But, our families get creative and find ways to ensure our trip happens. They know this friendship isn’t frivolous — it’s our lifeline.

The CF community is extraordinary. We are forced to find creative ways to connect as a group because, sadly, those with CF cannot be together in person. Through excellent virtual and carefully organized CF Foundation events and conferences, we navigate the ever-changing waters of personal connection. No matter the road, we recognize that we all have our common bond of facing our fears, working through our pain, and finding compassion through our collective challenges. We, indeed, are all in this together.

Lastly, to Angie, Kelli, Noreen, and Mary: I love you for always seeing the beauty in my broken, and for shining your individual light through the pieces I’ve tried to glue together. Thank you for making us a priority.

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Margarete Cassalina

Margarete is a public speaker, a freelance writer, and the author of Beyond Breathing, See You at Sunset, and Embracing the Beauty in the Broken. But, most importantly, she is a mother of two children who were born with cystic fibrosis: Eric, now 31, and Jena, who “moved up” to heaven in 2006 at the age of 13. Margarete has been a dedicated volunteer for the Cystic Fibrosis Foundation since 1991. She has served as National Leadership Council Member, National Public Advocacy Co-Chair, and National Volunteer Leadership Co-Chair, as well as chairing local events. Margarete and her husband, Marc, continue to raise funds and awareness for the Foundation by doing annual Xtreme Hikes, Golf events, and galas. For more about Margarete, you can visit her website.

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