Reflecting on 500 Posts on the CF Community Blog

As the first contributor to the CF Community Blog, I was ecstatic when the Cystic Fibrosis Foundation reached out to me about authoring the 500th post. As I look back on all the stories the CF community has contributed over the past three years, I can't help but feel grateful for the opportunity for connection.

Nov. 20, 2018 | 4 min read
Margarete Cassalina
Margarete Cassalina

“As our first blog contributor from the CF community, we wanted to invite you to author a milestone post: the 500th post on the CF Community Blog.”

When you get an email like this, the only answer is an unequivocal yes.

On July 17, 2015, I wrote “Ma, I Got It." It was a blog post about my (then) 24-year-old son, Eric, adjusting to being his own caretaker after I had been the one taking care of him his whole life. In the post, I addressed all the growing pains -- for each of us -- along that bumpy, independent road.

Since then, Eric has married the love of his life, bought a house just a few miles away, found new ways to manage a busy work-life balance between his health and being a financial advisor at Merrill Lynch, and taken strokes off his golf game.

While he's busy pursuing new adventures, I'm still doing what I've been doing since he was diagnosed in 1991: raising funds and awareness to extend his future. 

When I was 22, my newborn baby boy was diagnosed with cystic fibrosis, and I was told that his life expectancy was 19 years. My only hope, my only dream, was for my little boy to live.

And then, in 2006, the horrible, ugly truth about what cystic fibrosis can do hit home when his sister, Jena, moved up to heaven due to lung complications. She was only 13 years old. 

Forever broken, yet living in an altered normal, I still held on to the hope for my son's future. Today, I'm 50 years old and the life expectancy for a person with CF is 43 years. For that, I am grateful for all the scientific progress that keeps extending the future for Eric and our entire CF community. 

Anyone living with cystic fibrosis knows how isolating the disease can be, but the CF community is anything but isolating. Upon meeting anyone with this disease, you immediately have a kindred connection to them; their story may differ from your own, but the common bond goes as deep as the gene itself. 

That's why I didn't hesitate to say yes when asked to write this blog post.

Selfishly, it gave me an opportunity to say thank you to the entire CF community at large who, not only contributed hundreds of blog posts, but connected thousands of hearts with each written word shared.

The fact that this blog showcases incredible individuals living with cystic fibrosis, rather than the disease itself, makes it all the more amazing.

In each blog post, we are able to catch a vulnerable glimpse into the fears of a newly diagnosed family, share parental concerns about our children going to school, and even get the opportunity to hear the emotional stories and personal struggles that we otherwise would not have known. The person behind each post gives the reader the gift of insight and the ability to connect, where physical logistics aren't a problem and isolation is no longer defined by the disease. 

I'm happy that the CF Foundation has allowed me to contribute in some small way, but the real value and feelings of gratitude come from what this blog community has shared over the years. In our mission and in our stories, together we will make CF history.

Twenty-seven years later, my hopes and dreams have altered. It's no longer about me and my dreams, but the hopes and dreams of all those living with cystic fibrosis. May they continue to navigate an ever-changing CF landscape of never-ending tomorrows, achieving all the hopes they can possibly dream.

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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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About the CF Foundation
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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