“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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