Talking To My Young Child About CF (Part 1)

Even at the young age of two, I can sense my son is beginning to understand the role cystic fibrosis plays in our daily lives. He is undeniably soaking up both the explicit and implicit context of my disease even when I’m not verbally instructing him.

Whether he knows his mommy is a little bit different than most mommies, I’m not quite sure yet. (I’m sure he’ll come to that realization fairly quickly when he enters school.) For now, life with CF is all he knows. The coughing, medications, and crazy devices are all incredibly normal to him.

Why should you explain CF to your child?

Research shows that parental chronic illness can increase feelings of guilt or worry in children because a lack information and understanding about the disease.¹ In addition, an increased prevalence of behavioral and emotional problems have been identified in populations of children with parents with chronic illness when compared to populations with healthy parents.²

I believe it’s our job as his parents to help him process the experience of my disease, fill in the gaps of knowledge, and equip him with healthy coping skills for life. That journey begins now with how I talk about my disease to my young and impressionable child.

How to explain cystic fibrosis to a child

Age-appropriate honesty

Our family’s philosophy when talking to our son about CF will always be rooted in “age-appropriate honesty”. We never want him to feel as if he’s in the dark or missing important information about my health. My disease directly affects him, and therefore we believe he deserves to know as much information as developmentally sound.

Obviously, I won’t be reading off my less than stellar FEV1 numbers following a doctor’s appointment. However, I try to keep him informed about what’s happening to mommy’s body in a way he can understand and process. He’s so intuitive that sometimes it catches me off guard with how much he truly understands about my chronic illness. I am learning to give him more credit than I previously would have thought a toddler was capable of.

Special helper

My sweet two-year-old is fully aware mommy takes lots of medicine and does breathing treatments three times a day. It’s been that way since he realized his little hands could grab my tubing and steal my supplies. He loves to squirt my medications into the neb cups and always shouts an encouraging, “Yay! Mommy done!” after I complete a round of treatments. It’s adorable and actually a great motivation to me to see how excited he is.

I have paid particular attention to keeping him involved in my daily care. Whether that means carrying my supplies to my treatment set-up, helping flush my port when on IVs, or assisting me while sterilizing nebulizer cups. By exposing him to the daily maintenance of CF care, the fear and uncertainty of medical devices and intimidating hospitals has almost been lost on him. He’s made the connection that these tasks, places, devices, and weird tubes hanging from mommy’s body are NOT scary because he knows what they do and how to help me when we use them. Sometimes, he’s even a little too helpful.

Moreover, I hope he grows up believing I am fully capable of taking care of myself, but with his company and assistance, my disease is made more pleasant and bearable. I want him to feel as if he serves a special role in my care because the reality is a large part of my motivation is because of him. I'm motivated to take care of myself because he’s mine and always will be, despite CF. With that being said, I understand that CF is MY disease. Therefore, I would never expect him to take on a role that replaced his childhood responsibilities.

Medication safety

Often, we discuss what mommy’s medicine does in my body and how it helps me feel better. Using age-appropriate speech, I might explain my pancreatic enzymes are little “munchy bugs” that eat up the food in my belly. Usually, I will add, “Only mommy takes them because you have working munchy bugs in your belly already.” (My own mom used this analogy when I first started taking enzymes as a child.)

My goal is for him to be safe around the many medications and medical supplies scattered around our home. I try to keep things out of his reach with locked caps or stored away. However, if we are being completely honest, it's not always possible and these items need to be accessible to me.

We have made a point in modeling what to do if he finds a misplaced pill, vial, or device around our home. By instructing him to leave the item where he found it and then showing me the location, he is beginning to understand the handling of medications is a sole responsibility for mom (or dad), definitely not for him. Sometimes he will ask to “hold” my medications such as my pills, and I simply tell him “no” and offer another way he can be helpful right now. I want him to understand while medications are common in our household, they still can be dangerous and require help from adults to keep us safe.

Have you talked to your child about CF?

Do you have practical tips to help little ones make sense of CF?

Read on to Part 2 of Taking To My Young Child About CF where I share some extended practices we will use with our son as he grows to understand more about CF and how it affects him.

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