Parents: Communicating the Reality of CF to your Child

My parents filled me in on the details about CF gradually, rather than dropping a big "by the way, it's terminal" bomb on my head. Here are some thoughts I can share that may ease the burden of telling your child about the harsh realities of the disease. I've broken them down by age group.

Kindergarten - Third grade:

They explained that my body didn't work the same way as other people's. We didn't use the word "fatal" or "disease." Mom said that if anyone ever asked why I had to take enzymes or stuff, I should just say "they help my body work better." We talked about tummy aches and why it was important for me to take my pills so that I wouldn't have so many tummy aches.

Fourth grade - Sixth Grade:

This was the age when I started reading more. Discussions about CF were, in some ways, similar to being given "the sex talk." I didn't know enough to ask a lot of questions, and Mom wasn't going to go into detail that I couldn't handle about CF. Mostly I was told that if I wanted to be able to participate in all the things I loved (school, sleepovers at friends, etc.) then I had to be sure to obey the rules about taking my medications.

It was during this time that I also learned to play the french horn. Mom and Dad encouraged me to play a large wind instrument. They said that someday cystic fibrosis would make it very hard for me to breathe well, but the more exercise I gave my lungs, the easier things would be. (And they are!)

Junior High:

This age was awful. I think that's when I was beginning to know that CF was a VERY serious thing. I had read A Time to Die (Lurlene McDaniel) and "Toothpick (K. Ethridge) which were books about teen girls with CF. I had a lot of questions for my mom and dad about CF after reading those. They always answered me honestly. But they also made sure that I understood that I had a responsibility to live in the here and now and not worry about all the "What ifs." They said "there will be time for that, and when that day comes, we'll handle it together."

High School:

Mom and Dad told me once again that I was responsible for making good decisions. They told me that yes, CF is scary, unfair, and all those other things that make it so awful, but that no matter how bad it got, we were a family and we'd get through it.

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I don't believe in sugar-coating things, but the stark realities don't need to be dropped on a little kid either. Talk about the meds and the treatments and do your best to describe how they work and why they're important.

Bring it up in family time conversation, rather than a "sit down, we have to talk" discussion. Remind her that you love her and wish that she didn't have to do all these things, but since she does, you'll handle it together.

As far as how to say "it's fatal," I wish I had the right words for you on that. Tell your child that CF is a VERY serious disease and people (I stress the word people so that you remain future focused) can and do die from it. Remind your child that there is a lot to live for an a lot of things to experience and enjoy before that happens, and that's what you intend to help him or her accomplish.

This is something you probably want to emphasize: That she can't participate in fun things if she doesn't follow the rules. That's a good life lesson, CF or not. By phrasing it this way, it makes more sense to a child (whose reasoning skills are limited) than to say "take your meds or you're going to die."