An Interview With My Son With CF
Our son is 12 years old. He has only known life with CF. As much as I try to know how is feeling and what he is thinking about this, it isn't possible. I would love to be able to relate to him and connect with him more about living with CF, but I can't. Not to the degree that I want to. But in an effort to try to better understand him, I asked him some things that I have always wondered about but knew if I asked, I wouldn't get a straight answer.
Instead of interviewing him by having him sit in front of me, answering questions while I stare at him, I typed out 6 questions and gave him my laptop. I thought this would be easier for him instead of me trying to pry answers out of him. This way he would feel more comfortable talking about how he really feels about having CF.
Interview with Jax Roussa, age 12
- What's one thing you wish people without CF knew? The one thing that I wish people without CF knew is how much medicine people with CF have to take. I don't know if people know that it can be a lot and they just think it is easy to have CF but really, you have to take a lot of medicine and do a lot of things.
- If you could change one thing about having CF, what would it be? One thing that I would change about having CF is really nothing because I can't think about any changes that I could make. Maybe the number of treatments that I have to do because sometimes it feels like a lot.
- Do you get sad because of CF? I do not get sad because of CF because I'm not any different than any other person. I just have CF. I am still the same kid.
- Tell me about a time that you hated CF. One thing that I hate about CF is that I get tired more quickly than other people. That causes me to not do stuff that requires more energy as long as I would have liked. I don't like having to stop playing or running before my friends do.
- What is one good thing about having CF? One good thing about CF is that I have something that other people do not. Even if it is CF. Being different is a good thing.
- Do you ever talk about having CF at school? No not really. I only talk about it if somebody asks me about it. If they ask I will talk about it but I don't just go talk about any of it with my friends. I like to go to school and not have to talk about it.
I wonder how his answers will change
I know that these answers will change over time. I would like to ask him these same 6 things over the next few years and see how his answers compare. I think he would like to see his own thought process and how he has been able to look at having CF over the years.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?