Seeing My Future for the First Time With CF

Living with cystic fibrosis, your dreams for the future can be a little hazy. But while attending my grandmother's 90th birthday celebration recently, I was struck by an image of myself that I had never seen before: myself in the distant future.

July 28, 2016 | 4 min read
Jennifer Stump

Recently, I had the privilege of attending my grandmother's 90th birthday celebration. Ninety years -- isn't that amazing? Children, grandchildren and great-grandchildren, all gathered in one place to honor and celebrate 90 years of a remarkable life. And as I watched the most precious woman in my life blow out the candles and make a wish, I was struck by an image of myself that I had never seen before: myself in the distant future.

Celebrating 90 years well-lived at my grandmother’s birthday party.

Living with cystic fibrosis, your dreams for the future can be a little hazy. They shift and rebuild themselves in countless ways over the years. In the early days of my diagnosis, so many dreams seemed shattered. My life and future seemed drastically and suddenly shorter, and the path I was on jumped to new, unknown tracks. I saw my future as something fading away into the darkness, and for a while, I left it there.

Then, in my 20s, I began a road to acceptance and slowly built dreams for a not-so-distant future. I'd construct my life in 3- to 5-year increments, preferring not to think too far ahead. I was in a constant state of struggle between making plans and waiting for the one thing that could lead to my downward spiral. I tried not to think about the predicted median age of survival, but it was always there, looming overhead and making me feel like I was in the sunset of my life. I had wants and wishes for the future, sure; but for the most part, I tried to embrace the here and now. Those words from the musical, "Wicked" summed it up well: "Don't dream too far; don't lose sight of who you are." I'd only dream as far as I could see. It was my safety net in my world of an unknown future.

Even when my husband had told me that he saw his life with me, I nodded and replied that I wanted to grow old with him. But in truth, I never pictured us growing old together because I could never picture myself growing old.

Until that moment, when I realized I could.

Somehow, alone in a room full of people, the pomp and circumstance faded away and my own life played out before me like a movie, scenes of moments yet to come: 

My son at 5, then riding a bicycle; a vow renewal; and a high school graduation. Front porch swinging and a mother-son dance; Christmas with the grandkids; and, finally, blowing out the candles on my own cake, wrinkled and wise, but still with a twinkle in my eye.

Every image was of a future that I had never allowed myself to see, as I let fear of the unknown dictate my life.

This is what these recent advancements in CF treatment and research are doing for those of us with CF, our loved ones, our families and our friends. They are adding quality to the here and now and rewriting our futures. We have careers; we're planning for retirement; we're thinking about children, and, in some cases, we're having them. We will get to see those children grow up and have children of their own. We have futures that are tangible for the first time. 

I don't know exactly what the future holds; none of us ever do. But for me, now, in this place of constant advancements, I look to the unknowns of the future as my sunrise and a new dawn of days to come for all of us.

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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Jennifer, 36, was diagnosed with cystic fibrosis when she was 16 years old. A northern Virginia resident and Pittsburgh native, she spends her days teaching elementary school. Outside of the classroom, Jennifer focuses her energy on supporting other moms with cystic fibrosis throughout their motherhood journeys. She enjoys cooking, writing children's books, and memory keeping. Above all, she loves spending time outdoors, hitting the trails with her two dogs, husband, and sweet son, Henry James.

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