"Moms and Dads are Tough: An Interview With My Son About CF" by Janeil Whitworth

My son, Fenn, is 7 years old and loves math, riding his bike, and building “bases”, the 2025 version of a 1990s fort. He is an active, smart, caring kid, and a big brother, who also lives with a mom who has cystic fibrosis. Fenn was born in 2017, as a product of Orkambi, and has walked alongside me through terrible decline and the subsequent release of Trikafta. Although he may not remember the details of the hard days, I think it’s cool that he is part of a group of children whose parents have CF and have witnessed a significant transition in CF history. 

For him, CF is just a part of our lives and as a parent, I will forever be grateful for that fact.

Fenn sat down with me at the breakfast table to answer a few questions about having a mom with CF. At first, he was a bit nervous. He didn’t want the public to see him in his jammies (The cutest). I explained I would just type out his answers, there’s no video and no right or wrong answers. I added the goal was to share his point of view and thoughts. He asked me why we were doing this. I said there may be other kids like you who have a mom or dad with an illness and if you’re brave enough to talk about it, it might make them brave too. I said it’s good to share our stories from time to time. Once he thought about it for a while, he was game and ready to do the interview, still in his jammies. 

Here are Fenn’s thoughts: 

Mom: If you had to explain CF to someone like a friend, what would you say?

Fenn: I would say someone is born with CF. It’s in your genes and DNA. [Makes questioning face]. 

Mom: Yep, that's exactly right!

Fenn: It makes a lot of mucus in your body. 

Mom: Nice job! That was a great explanation. What things does Mom do to take care her of body?

Fenn: You do treatments…uhm, you take a lot of pills. You also need to eat when her blood sugar runs low. I don't have that. I don't have CF, so I don't do those things. 

Mom: Right! You take care of your body in other ways. Do you think it's weird your mom has CF? 

Fenn: [Looks at me nonchalantly] No, it's normal to me. 

Mom: [I internally laugh. I think it’s weird, so I’m glad it’s at least cool with him.]

Mom: Is there anything hard about Mom having CF?

Fenn: Uh, well. I don't know. You have to do treatments, but nothing really. That takes a lot of time. It's just normal. We get to watch the iPad while you do treatments. Speaking of treatments, let's go do that! 

It was, indeed, time for treatments…

Mom: Yeah, we’ll do treatments in a bit, bud. Do you ever worry about Mom with CF? 

Fenn: OK. Um, no, I'm used to you coughing and I just want you to be healthy. If you go on IVs when you're sick, I feel a little scared something will go wrong. 

Mom: That makes sense, buddy. IVs can be hard. 

Mom: Is there anything cool about a mom who has CF?

Fenn: Not really. I think your blood sugar machine is cool that goes to her phone. 

Mom: [Internally struggling that there’s nothing cool about me but my CGM. Worries he has missed all the big life lessons about empathy and caretaking, then remembers he is a 7-year-old boy and wants to watch the iPad.)

Mom: What would you tell other kids who may have a mom or a dad with an illness like CF? What advice would you give them?

Fenn: Don't be worried. It can be a part of your normal day. And moms and dads are tough. 

Mom: That’s a good one! Thanks for answering those questions. I learned a lot. 

Fenn: Cool, you’re welcome. Can we go to treatments now?