Day 5: CF Camps
Our shared experiences connected us, making an unlikely bunch of children with differing likes and dislikes firm friends.
Fun in the sun
There were lazy summer days at the beach, tube rides, and the occasional day trip. On the days spent at the campgrounds, we’d participate in mini Olympics (which saw some bedsheet togas appear one year) or slide down our homemade waterslide.
Even physio, normally a boring daily chore, was fun. We would line up and chat as we waited. The line for Lappa was always the longest; he had a gentle way of performing percussion, which always made physio seem more like a massage.
The Nighttime bonding
Lights out meant the start of endless chats. It was where we shared our stories and learned from the experiences of others. We shared our fears, our hopes, and our dreams. At camp, I learned what my future held.
It gave me a greater understanding of CF and the need to stay healthy for as long as possible. I learned about infusaports, coughing blood. I saw what the progression of my disease looked like.
Knowledge is power, and when my health started to decline I knew what to expect.
31 Days of Cystic Fibrosis Bonus Fact
When playing Capture the Flag with other children with CF, the main problem is that inevitably someone would cough and give away their hiding spot.
… and a horrible fact
Due to cross-infection guidelines, people with CF are not encouraged to meet in person; there are no more camps or social activities. Some people with CF have never met another person who also has CF. The isolation, along with the harsh medical regime, has seen mental health issues in our community rise significantly.
Want to read more about Cystic Fibrosis?
View my Medium publication Speaking Chronically for more!
Sandi Parsons - Cystic Fibrosis Warrior.