6 Stories on Loss and Everyday Life With CF

We’re spotlighting six authors who have written books based on their experiences with cystic fibrosis. Check out what writing about CF has meant for them, and what they hope their readers will learn from reading their stories.

| 9 min read
Hannah-Avery-Headshot
Hannah Avery

Abby Alten Schwartz
Author, For years, I feared that I’d outlive my daughter. And then science did something amazing.

“Last year, my daughter graduated from college. She recently started her first full-time job and is apartment hunting with her best friend. These milestones, bittersweet for most parents, feel monumental to me. As my daughter steps into her future, our family of three stands on the precipice of a life we didn’t dare contemplate before now. Until recently, I still believed I would outlive her.”

That was the opening of my personal essay, recently published in The Washington Post. I wanted to share what it’s like as a parent living with the chronic threat of cystic fibrosis. When pitching the piece, I asked, “How do you raise a child and point her toward the future, when you’ve been told she may not have one?”

Being a mom to a child with CF informed my career as a health care writer and communications consultant to hospitals. In a sense, we parents of children with CF become medical experts too, don’t we? During the pandemic, I began writing about being a parent to a child with CF (with my daughter’s blessing) as a way to process my trauma and draw deeper meaning from my experience.

I’m currently writing a memoir in essays that explores the relationship between mothers and daughters, control and surrender, chronic illness and resilience, and the power of speaking your truth. Find me on Twitter or visit my website to read about it and find links to my writing in The Washington Post, The New York Times, Wired, and more.

Alexandria Yarborough
Author, Lorelei's Roses: A Book About Cystic Fibrosis

My goddaughter, Lorelei, was born with cystic fibrosis in 2017. She is smart, funny, beautiful, and such an inspiration. Everyone who meets her adores her. I love reading books to her but couldn't find a children's book that represented her journey – so I wrote one. The book not only focuses on how special she truly is, but also explains the daily schedule of someone with CF. 
 
As a pharmacist, I realize the vital role that medications play in Lorelei’s health, but it takes an entire community of support to keep her well. The book highlights the care team involved such as her doctors, pharmacists, and family support who are dedicated to making sure she, and all people with CF, live a full, healthy life. 
 
I titled my book Lorelei's Roses after Lorelei, but also with a nod to the 65 Roses story. Lorelei's middle name is Rose and proceeds from the book go to the Cystic Fibrosis Foundation. My hope is that Lorelei's Roses is used as a tool to educate both children and adults about CF. So many people don’t realize that they have a connection to CF and the more awareness we can bring, the closer we are to a cure.

Darla Garvey
Author, Muddy Thursday 

I would have preferred to write a work of fiction, rather than a memoir that centers on the most traumatic event of my life -- and that is the death of my 12-year-old son, Ray Garvey. But Muddy Thursday is the story that chose me.

My son, who had CF, was equal parts feisty, stubborn, and mischievous. He was also charming, kind and thoughtful. He had a knack for bringing people together with his positive attitude and his wonderful sense of humor. In spite of having CF, Ray lived with grace and courage, and he was a role model to his younger sister, Martha, who also has CF. The time between Ray and Martha's respiratory treatments was golden and it was never wasted, their appreciation for life always present. 

One night, while running through the neighborhood, Ray collapsed and died suddenly from an undetected heart arrhythmia called ARVD. It seemed especially cruel that a young boy who brought laughter to this world, and one who fought each day to slow the progression of CF, would be blindsided in such a shocking way. After Ray’s death, Martha was left to deal with CF complications without the one person who would have understood her fight and would have championed her. Muddy Thursday chronicles Martha's courageous journey with -- and without -- her only sibling.

Soon after Ray died, I remember thinking, this is where his story ends. No one else will get to meet him. But eventually I started to write to preserve the memories of my son, and I discovered the power of storytelling. I'm excited that my story is now published, and it thrills me to think that people will meet Ray. His story doesn't end. If readers walk away with just one message from Muddy Thursday, I hope it is a reminder to fully embrace life the way that Ray did -- no matter the challenges.

Mandy B. Anderson
Author, Dangerous Hope: Planting Something Meaningful in the Soil of Disappointment

“Mandy, this is not how your story ends. No matter what your new normal is … you will make this matter.”

Those were the words I said to myself in the spring of 2012, while fighting for my life in the hospital. My lung function had dropped to 22%, all because I stopped doing my medicine for two years. My reasons for doing this were a bit unconventional – I prayed for a miraculous healing of CF, and I was walking by faith to live it out. It turned out that the miracle of my story wasn’t that I was healed of this disease; the miracle is that I lived to tell the story and my health was restored without a lung transplant. 

I wrote my best-selling book, Dangerous Hope, to share my story of life with CF, and the lessons I’ve learned from being a business owner, so others can learn from my mistakes and be encouraged in their own journey of hope. 

As humans, we hope for many things in our lives – for our circumstances to change, for our businesses to succeed, for equality, justice, and positive change, and even for a cure to disease. But when the things we hope for don’t happen, we can get stuck in a cycle of disappointment. This book is your guide to getting back up again when your hope feels lost. Connect with Mandy at mandybanderson.com or on Instagram

Sara Kominsky
Author, All That is Gold Does Not Glitter

I was inspired to write All That Is Gold Does Not Glitter because the majority of informational material on cystic fibrosis is not presented in a captivating fashion -- nor targeted toward the ever-curious adolescent demographic. My goal was to educate people, especially those who are not intimately involved in the daily routine of a CFer and help them understand the pervasive emotional and logistical impact of the disease on the entire family.

 

Tim Sweeney
Author, Diary of a CF Kid

When I was (much) younger, I wished I had a book like this to help navigate the ups and downs of having cystic fibrosis. I was born with cystic fibrosis at a time when there wasn't a lot known about it.

Throughout my life, I have faced challenge after challenge and never gave up. As a result, I learned all the tools to be a CF warrior every day -- tools such as exercise, good eating habits, compliance with breathing treatments and medications, and having the right mindset. Just like a superhero, I rely on my family, friends, and doctors to help, but also rely on myself. In Diary of a CF Kid, I share the life lessons I’ve learned, such as trust, self-esteem, integrity, courage, and many others, to help other CF warriors win daily battles. 

Let's face it, a lot of kids find reading too boring and not as exciting as an iPad. Diary of a CF Kid is told in the entertaining Diary of a Wimpy Kid style with funny sketches and stories that will make you laugh, engage, be inspired, and learn. It is neatly divided into small sections, making it perfect as a bedtime story. 

This book is for a CF kid, but it is also for the parents of a CF kid who want to know how their child experiences the world. How do CF kids perceive CF? What are the fears and hopes of a CF kid? What are some of the values that are important for a CF kid to practice daily?

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

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Hannah is a senior community engagement specialist at the Cystic Fibrosis Foundation. In her role, Hannah engages with the CF community to develop content to support the Foundation's programs and manages the editorial calendar for the CF Community Blog. She has a bachelor's degree in public relations with minors in professional writing and business leadership from Virginia Tech. Hannah lives in Washington, D.C., and in her spare time, she enjoys trail running, reading with a cup of coffee, and spending time with her friends and family.

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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.