How We Explain My Child’s CF

Figuring out your child's CF diagnosis is complicated on its own, but learning how to communicate everything that goes into caring for your child to those outside of the CF community can be even more overwhelming. Here are my tips and tricks to using your voice to both educate and advocate on behalf of your child.

| 7 min read
Rachael-Havey-Headshot
Rachael Havey
Rachael-Havey-Dean-Renley-Woods-Smile-Featured-Rectangle

When our son, Dean, was diagnosed with cystic fibrosis as a newborn, my husband and I were beyond overwhelmed, as most new parents would be. Once we began to wrap our heads around things, we started sharing the news with family and friends. Since we were still learning what having cystic fibrosis meant for Dean and our family, explaining his diagnosis in those first few months was a challenge.  

As he has grown up, our conversations have changed a lot regarding how we share Dean's diagnosis. Our understanding of the disease has definitely developed, but on the outside, people tend to see him as a healthy kid -- which often brings more questions from those around us.

From navigating conversations with family and friends to preschool teachers to summer camp instructors, here are a few ways our family has learned to communicate about cystic fibrosis over the last seven years.

Family and Friends

As I mentioned earlier, we had no idea how to tell our loved ones when we first received Dean's diagnosis; but over the years, it has gotten easier. Although they all now know he has CF, we still have to give “reminders.”  

Dean is a very active kid, but keeping up with the friends and family around him can really take a toll on his health. We have to remind them, and Dean, that eating and sleeping are just as important as his medications and treatments, and that he can't go all day and stay up super late, as it will take him multiple days to catch back up.

Additionally, we inevitably have to remind some family and friends about cold and flu season, and explain which events we will and won't be able to attend because of germs. This can be frustrating at times, but we remind ourselves that we live with CF every day, and our family and friends don't. I have learned not to feel badly when I ask who will be at events we are invited to, and if anyone has been sick lately. It's a necessary check for us and a good reminder for our family and friends to be aware of what we must look out for on a daily basis.  

Preschool

Dean spent the first four years of his life in a very small, in-home daycare with friends. When we decided to put Dean into a half-day preschool at 4 years old, we were a little nervous. Luckily, the preschool we chose was part of a school district, had a nurse on-site, and previously had twins with CF attend, so they already understood what Dean would need.  

We also worked with the preschool teachers to be sure he had access to the restroom and soap/hand sanitizer whenever he needed it, and we shared the Foundation's website and some key resources we found to be helpful over the years.  

Kindergarten and Beyond

When we moved from preschool to kindergarten, my mom and my teacher “hats” really collided. Although I didn't want to be That Mom, I also knew as an educator that if we started small with Dean's needs, it could be harder to request more down the road. So, I laid everything out for the school during our initial meeting. Because of this, we decided to have a 504 plan for Dean as opposed to an Individualized Education Plan (IEP).

Rachael-Havey-Dean-First-Grade-Vertical

Once we developed a 504 plan that accurately addressed his needs, we decided it was time to share his CF with his classmates as well. So, when the teacher came over for her home visit (something all teachers at Dean's school do), we made sure it was treatment time so she could see him do his vest and nebulizer treatments and ask questions. Additionally, we gave his teacher a book about CF to read to the class with time for Dean to answer questions from his classmates.  

Because we worked so closely with his teacher to explain Dean's CF, his friends and classmates are very aware of his needs. In fact, when I go on field trips or visit at lunch, they will tell me why he needs to take his enzymes!

As we get ready for second grade, Dean and I are working on writing some more personal things about what having cystic fibrosis means to him to share with his class this year along with the book.    

Summer Camp

This summer was Dean's first time at a day camp where the staff did not know him. Because of this, I reached out to the staff before camp started, shared Dean's 504 plan, and requested a short meeting with them prior to his first day. The staff was extremely accommodating, and even called me a couple of times to let me know when there were sick campers in his cabin. We made simple accommodations such as sending his own bottle of water and enzymes in his lunch box every day, and requested that Dean bring home his camp T-shirt daily so we could wash it each night.

Employers

The fact that my child has cystic fibrosis is one of the first things I share with new bosses and coworkers. Kids inevitably come up pretty early in the conversation when I meet someone new at work, so I don't shy away from the fact that Dean has CF. And if kids don't come up, the “breathe” and rose tattoos on my wrist do. I take these moments as opportunities to advocate and educate those I work with about cystic fibrosis.

I don't ever want anyone around us to be afraid to ask questions about CF, what it means for Dean, how they can help, or anything else for that matter, and if I don't share his diagnosis from the onset, it makes it difficult for people to feel comfortable asking later on. I've found that educating the people around you makes a huge impact, as I even have had coworkers tell me that they asked their doctors if they were CF carriers when getting pregnant because of what they learned from our family.  

I've talked to many CF families and CFers since Dean's diagnosis and I've learned that everyone has their own way of sharing and explaining CF. As Dean grows up, I'm sure the way he shares his disease on his own will change. But no matter what, my husband and I will encourage him to be open about who he is -- CF and all -- and to advocate for himself as he educates and shares with those around him.

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Topics
Parents & Guardians | Working with Your Child's School
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Rachael is the mother of her daughter, Renley, and her son, Dean, who was born with cystic fibrosis. A graduate of Indiana University and University of Indianapolis, she now works for AdvancED - Measured Progress, a non-profit education organization where she provides support and professional learning to school and system leaders. Rachael and her husband, Matt, are very involved with the Indiana chapter of the CF Foundation. Matt is a member of the Indiana chapter's board, while Rachael volunteers at events and has been the chair of Indiana's Cycle for Life since the first ride in 2013. Rachael is also a member of the Foundation's Community Voice Editorial Board, Research Voice, and participates in a variety of advocacy efforts. Rachael and her family live in Indianapolis. You can contact her at rachael.havey@gmail.com or @RachaelHavey on Twitter.

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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.