The Game of My Life

     For about seven straight summers, from the day school got out until the day we went back, you could find me and my brothers behind our house playing together every day.  Living in a home on a hill situated along M-24, which is a state highway where cars always fly past at 55 plus miles per hour, we had no front yard options unless they involved counting blue cars that drove by.  But that was fine, because behind our house, we had place that was our own little field of dreams.  "Down the hill."  "Down the hill" meant only one thing to me and my two younger brothers:  baseball.

Show Me The Blueprints

     When I was 12, I was asked to meet someone named Wendy and her son, fellow residents of my small hometown.  I was told he had CF, just like me.  But, even by that age, I knew there was nobody who had CF "just like me."  I was not aware at the time that my mutation is the most common one, but that didn't really matter.  At CF Camp, which had been discontinued due to the dangers of cross contamination a few years before, I recognized that there was a wide spectrum of what life with CF was like, even though most of the kids there seemed to be having an experience much like mine.  I could tell some were having more problems, and some were in better shape than me.  (Camp also erased my notion that having CF and being short were inexorably linked.  The more you know!)  Even at 12, I had some trepidation about meeting a mom who had a baby with CF.  I recognized then, and I know even more clearly now, that the story of my CF journey was not offered as a guarantee, blueprint, or prophecy.  I was there to offer hope.

... It's Who You Know.

In my speech at the CF Family Retreat, I also mentioned the book I wrote for the "Young Authors" assignment in 4th grade, titled A Day at CF Camp. I'm so glad my ten-year-old self chose to record these details-- I had completely forgotten about some of them. I think it is noteworthy that I included so many specifics about camp, but don't explain what Cystic Fibrosis is whatsoever.  The full text and a few photos of my most excellent illustrations follow.

This book is dedicated to all my friends at camp. 

Every day at CF camp is very tiring. 

You get up, get dressed, brush your teeth, wash your face, and go outside. 

Then one of the cooks rings the bell for breakfast. 

After that you can do lots of things: go for a run, play frisbee, four square, dodge ball, or volley ball. 

Next you eat lunch, but before that you wash up. 

After lunch you rest in your bunk until the counselors let you out. 

In the afternoon you pair off with your counselor and you can play human knot, memory ball, long jump, boccie ball, or go swimming. 

The cooks ring the dinner bell, and then you eat dinner. 

After that you get a treatment for a half hour. 

Before camp you set back your watch one hour so you go to bed ten o' clock camp time. 

On two special nights you go to bed later. On the third night we have a dance and on the last night we have a bonfire. 

It's Not What You Know...

In my speech at the CF Family Retreat, I referenced the book I wrote in second grade, I'm Short and Have CF.  It provides an excellent glimpse into the perspectives of 8-year-old Evin. The entire text of the story appears below, along with a few photos of some of the more precious illustrations. 

Short is not fun. Sometimes I get in people's way. I'm the shortest one in my class, and probably the whole school too!

But I can run fast!  It makes me feel good that I can run fast. 

It's not my fault that I'm short. I was born that way. 

My lungs collapsed and I have Cystic Fibrosis, that's why I'm short. 

Every six months I have to go to Detroit to have a check up. I have to take enzymes to grind up my food. 

Every night I have a treatment. I sit on my mom or dad. They cup their hands and hit me gently. 

Except for having CF, I'm okay. Even though I'm short, I do have friends and that makes me feel good!

The End.