Viewing 1 reply thread
  • Author
    • #18164
      Jenny Livingston

      Since my clinic appointment last week, I’ve been reflecting on how different clinic days have been since starting Trikafta; how different post-Trikafta life is in general, really.

      After doing PFTs last week, I sent my daughter a quick text message to let her know my numbers. In response, she sent a celebratory GIF. She is nearing her teenage years and has witnessed A LOT regarding my health. For us to live this Trikafta phase of life during a time that she is old enough to recognize its positive effects is something I treasure.

      I’ve always believed that open communication is best when it comes to parenting and that includes the way I’ve chosen to talk about CF with my child. Honest questions deserve honest answers, I believe, so when she’s asked even difficult questions, I’ve answered them (in age-appropriate ways). This has led to some difficult discussions throughout the years — like the time when, at the age of 6, she asked me point blank if I could die from CF — but I would never want her to worry alone. We’ve faced the scary questions and seasons of life hand-in-hand just as we’re celebrating this exciting season of life together.

      I know that this isn’t the approach that every parent would choose, and I respect that. As parents, I believe that we know the best way to navigate these tricky discussions with our children. Transparency and openness have worked well for my little family, but I know some who have chosen to shelter their young ones from the harsher realities of CF for reasons I can completely understand. If you are a parent, how have you chosen to talk with your child about CF (whether you have it, or they do)? At what age did your child start asking questions? If you have multiple children, have you handled these discussions in the same way, or have you individually tailored the conversations to each child?

    • #18172
      Paul met Debbie

      Debbie and I don’t have kids of our own, but in a previous life I have some experience. When my first wife had adopted a little baby boy and was having some difficulties in adjusting to this situation, I (between relations and looking for temporary lodging) moved in with the two of them and helped them out. Which was an interesting twist of nature, because it seemed because of our not having kids that eventually our marriage of twenty years had broken down. I will not mention his name for reasons of privacy, but let’s call him Bram. I helped him learning to walk, talk and enjoy his life. We had long walks together with the two dogs of the house and I showed him how to appreciate nature. I took him everywhere I went, doing the weekly shopping, cleaning the car, visiting my sister. And Bram loved everything we did together. It was a precious experience for the both of us. After about two years, when Bram started going to school and seemed to have settled well enough with my first wife, time had come to say goodbye again and leave them to themselves. We are still in contact.

      Regarding my health, Bram was still very young (between almost 2 and 4 years old), and the word CF didn’t happen. He learned matter of factly that I took pills with my meals and nebulized twice a day and coughed a lot. He was mesmerized with the “cold steam” that came out of the apparatus and always wanted to feel this on his cheek. And Bram knew that my pills were only for me, to make my belly feel fine.

      There was more experiencing in this process than talking or explaining, and I think that is the way to go generally. Kids don’t separate what they see from who they are, things just happen in a certain way. If the adult seems to be okay with that, so is the kid. Only later when they have learned to think, separate and worry, when they learn about time and future, problems may start. It is important to watch that process carefully and put it into the right perspective every time it becomes problematic. Because in the end, nothing is problematic. Not even the question about what we call death. Anyone can die every second from all kinds of causes, CF is not special in that. It is just what happens. It is life and love.


Viewing 1 reply thread
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen


We're not around right now. But you can send us an email and we'll get back to you, asap.


Log in with your credentials


Forgot your details?

Create Account

Verify you are not a robot