What My Children Taught Me About Explaining Their CF

As a frequent public speaker, I was surprisingly nervous the day before I spoke to my kids' classmates about the realities of cystic fibrosis several years ago. Luckily, my kids knew just what to say to calm my nerves.

Aug. 22, 2017 | 5 min read
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Lisa C. Greene, M.A., CFLE

I have to admit I was a little worried about how the talk at school would go. Even though I am well-trained in communicating with kids, I am a mom, first, and, moms worry! It's part of our DNA.

The kids had just started a new school, and the teachers requested that I talk to their classmates about their medical issues. Both of our children have cystic fibrosis. They need to take medication (pancreatic enzymes) to help them digest their food properly. Of course their classmates have noticed Jacob and Kasey chucking down a handful of pills at lunchtime and have barraged my children -- and their teachers -- with questions.

I spent a couple of hours preparing for the talk. I wanted it to be fun and informative -- sort of like a health education class. Kids need visuals, so I found a diagram of the digestive system that could be colored. Jacob and Kasey helped me gather some show-and-tell items: a nebulizer cup, an albuterol puffer, and a few opened-up pancreatic enzyme capsules placed in a baggie (kids always want to know what's inside). We also made a plate of brownies and grapes to share and to help explain how kids with CF have different nutritional needs than most people.


Jacob, Kasey, and I decided together what to talk about, and I gave them lots of choices: Do you want to talk or have me do it? Will you be with me or at your desk? Kasey (in first grade) decided to have me do all the talking, but she would be my helper. Jacob (third grade) decided to talk about pancreatic enzymes and have me teach about the rest. We were prepared, and the kids' classmates were excited. Kasey's little girlfriends were buzzing with anticipation. They were all so curious about CF.

I was nervous. I do plenty of public speaking, but I was more nervous about speaking in front of 20 first and third graders than 200 adults. These are my babies, and this is “life-and-death” stuff in front of their classmates. What if I blew it?

One of my biggest fears was that a child would innocently ask, “Will Jacob (or Kasey) die from cystic fibrosis?” The honest “grown-up” answer is, “It's possible unless there is a cure.” But, that's not something a class full of 7- and 9-year-olds need to know. I wasn't exactly sure how I would answer this question, and I wasn't sure if my kids really understood this reality even though we had discussed it years earlier. So, taking my cues from the well-known psychiatrist Dr. Foster Cline, I decided to ask them.

Preparing for the worst, I casually (but with heart pounding) asked my son, “So, Jacob. What would you say if someone at school asks you if you can die from CF?” He thought for a moment. Then he said, “Well, I would say people do die from CF. But we are more likely to live longer when we take good care of our bodies.”

Wow! The answer of my dreams! He knows the reality of the situation but also understands the role he plays in taking responsibility for his health care. Plus, he understands the long-term impact of his health care decisions. I was massively encouraged.

Later on, I asked Kasey the same thing. She said, “Well, you can, but if you eat healthy and take all your medicine then maybe not.” Bingo! Two for two. Both kids have an understanding of the reality of CF and are hopeful about positive outcomes based on their choices about self-care. I have to say I was a little surprised. I didn't think that children this young could have such a mature attitude and understanding of such a heavy situation.

The talks went well that day. All of the children were curious, open, and delightful. We had a lot of fun together, and they loved eating the brownies and grapes. Kasey even demonstrated how she could chuck down four enzymes in one swallow. The kids couldn't have been more amazed if it were a flaming sword.

And no one even asked the dreaded question. Go figure.

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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Parents & Guardians | Working with Your Child's School | School
Lisa Greene Headshot_square

As a national public speaker, Lisa speaks to parents and medical professionals about parenting, medical adherence, transition, and resilience. She is also the author of three books on parenting children with health issues. Lisa is a certified family life educator and parent coach. She holds a master's degree in family life education and teaches college classes at Concordia University in the Department of Child and Family Education. Lisa's mission is to help families learn practical, easy-to-use tools to deal with the everyday challenges of living with CF. You can find more articles by Lisa at www.TipsForCFparents.com.

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