Growing up can be tough. It’s challenging to create structure and routine for children, but growing up with CF makes it even more challenging. The hours spent daily on therapies, and interruptions for therapies or clinic visits can really make the experience of growing up difficult; but we know that our community is stronger and more resilient from it all. We asked our community of blog contributors, now adults, to reflect on their experience of growing up with cystic fibrosis.
“CF was always just part of life. I remember feeling annoyed when I’d have to stop playing in order to do physio or miss school because of appointments, but when you don’t know anything different, it’s just part of life. I was lucky because I was always a pretty healthy kid and never had to spend a lot of time admitted to hospital. But even when I did have to be admitted to hospital, we were always able to make the best of it. My parents always made my CF just another part of life. That’s the great thing about kids. They’ll make it whatever you make it, and they have this incredible ability to just be in the moment.” – Kim Wood
“My experience with CF as a child was sometimes hard due to bullying, limited health, and minor hospitalizations. During the 80’s there was very limited knowledge about cystic fibrosis, so the thought of dying young was on my mind often and there were times where people often would say things out of poor understanding, but was difficult to hear. Treatments and optimism were not as advanced as it is today. However, the ability to spend summers with many other people who had CF are some of my best memories. Despite the understanding of how problematic that concept was, I have many friends still today because of that time. Many of the stories I hear from families and young people still experience many of the same problems I did when I was young. Because CF is a terminal, chronic and invisible illness some things will not change until we have better treatments, medicines and a cure.” – Rob Burtch
“As a child, I struggled with the routines of CF care (physio, pills, etc.) just like any child struggles with routines such as bed-time, meal-time, etc. I did create a positive connection with the CF team at my clinic, so going to the hospital was not as frightening of an experience as you might expect. I did deal with some stress when I was six years old, worrying that my CF was a burden for my parents, but with some counselling I was able to overcome that. My family also helped me to come up with ways to manage questions that came from my class-mates and friends, mostly by helping me to understand CF as best as I could so that I could explain the disease clearly to others and teach them about CF. My experiences with CF as a child helped to shape me into an adult who can cope with challenges in a healthy way, and I am so grateful to my family and CF team for that.” – Terra Stephenson
“In the early stages of life, I have to say that I only saw the good in CF. Can we say… chocolate pudding!? Being the first of my siblings to be able to have all the chocolate pudding that I wanted was a five year olds’ version of “livin’ the dream”. Visiting SickKids was also an adventure. I got to see my favourite nurse, Louise, and we always made a special visit to the Five Fifty Five Gift Store for a reward for being brave. My parents insisted that I led a positive, limitless life. Sure, I was wrapped in four towels for swimming lessons, but for the most part, I was never held back by my illness. I’m proud of my parents for giving me such positive, gratitude filled formative years.” – Stephanie Stavros
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