If you're the parent of a child with cystic fibrosis, you probably know the worry that comes along with sending your kid away to summer camp. To ensure that my own kids with CF were cared for at camp, I wrote the following letter outlining their special medical needs.
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Our community's shared journey makes us unique and unites us in the hardest of times for some and the most hopeful for others.
Although not part of my son's “official” care team, our local pharmacist plays a key role in his cystic fibrosis care.
When my mom used to ask me what I wanted to be when I grew up, I told her that I wanted to be a dad. The journey to fatherhood with cystic fibrosis is full of obstacles, but I would give anything to pass on the traits I've gained from living with this disease to a child of my own.
There are no easy remedies for the perpetual dance that the parents of a chronically ill child do to deal with the painful and enduring isolation. And personally, I found a sense of hopeless defeat.
Although my lung transplant was the end of one story, it was also the beginning of another, more difficult story.
I made it onto the transplant list after first being rejected. After 18 months of waiting, I got the call that my new lungs were waiting for me.
I did the research. I asked the questions. I thought I knew what to expect when I had a double-lung transplant. I was surprised by what I learned.
CF demands a parent's time, but childhood lessons taught me that all of my children need my love and attention.
There were three important things that my parents did for me while I was growing up that helped me become an independent and positive person.