Reaching for the Stars

My daughter loves looking up at the stars, which is perfect because we plan on teaching her to reach for those stars in every moment of her life and not settle for anything less.

| 4 min read
Emily-Bell-Headshot
Emily Bell
Emily-Bell-Peyton-Flowers

Our lives are filled with many singular moments. There are moments of happiness, joy, sadness and fear; and some of these moments will forever stay with you. In December 2011, our lives were changed forever when our precious daughter, Peyton, was diagnosed with cystic fibrosis.

I vividly remember getting the call -- while Christmas shopping with Peyton -- letting me know that something was abnormal on her newborn screening. I immediately knew. Afterwards, I don't think I put her down for at least a week. She was my baby; how could this be happening? She was our firstborn and we were still trying to navigate being new parents, let alone being new parents to a child with a genetic, life-threatening disease. I am also a nurse, so I immediately assumed the worst possible scenarios.

At every doctor's appointment, I felt physically ill with all the questions racing through my mind. What are they going to say? Has she gained enough weight? Is her respiratory culture going to come back clear? Are we doing everything the correct way? Am I always going to cry at every single blood draw? Does her CF care team think we are doing a good job of taking care of her? For months we coped, but it probably took a solid year for us to really thrive emotionally. We relied on our faith to pull us through, and we realized that we could do this. We could take care of her and teach her that everyone lives life differently, and this was just going to be her way of life.

Two years later, I decided I wanted to do more. Not just for our baby, but for others whose children are affected by CF. But how could I do more? We had been involved in fundraising efforts such as Great Strides, but there had to be more that I could do.

I wanted to reach for the stars and beyond. That's when I realized that I could use my profession. So, I became a CF research nurse in January 2014 and have never looked back.

Every single day, I get the privilege of working towards finding a cure for this disease. Not just for my baby, but for everyone living with CF. Lyrics to a song come to mind, “Why sit around and wait for a miracle to come, when you can be one?”

At first, my family was unsure of how I would cope in this new role, and there were days I was also unsure of my own coping abilities. But today, I am stronger than I have ever been in my life, and the work that I do is extremely gratifying. I am glad that I pushed myself so that I could do more. I know that for all of those affected by this disease, there is so much to look forward to.

Emily-Bell-Peyton-Flowers

Peyton is now turning 4 and is, of course, one of our greatest blessings in life. Incidentally, one thing that she can't get enough of is the stars. Every time we are outside, she points at them with such excitement and says, “There are the stars, mommy!” We plan to teach her to reach for those stars in every moment of her life. I will raise her to settle for nothing less. Our family will also continue to reach for the stars until a cure is found, and beyond.

Share this article
Topics
Parents & Guardians | Diagnosis
Emily-Bell-Headshot

Emily is a wife to her husband and a mother to two children, Peyton and Brody. Peyton was diagnosed with CF shortly after her birth in November 2011. Emily is a graduate of the University of Cincinnati with her bachelor's degree in nursing. She is currently working at Cincinnati Children's Hospital as a CF research nurse. When she isn't working towards a cure, Emily is actively involved in her community through her local church, where her husband is the pastor.

Recent Community Posts
What To Do When “Most People Will Be Fine” And You Are Not “Most People”
Blog | 8 min read
Struggling to Process My Son’s Rare Mutations
Blog | 6 min read
More Than a Lung Disease
Blog | 5 min read

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.