When I was growing up, having a positive cystic fibrosis diagnosis did not automatically mean that I got the care and treatments I needed. It wasn't until my 22nd birthday, when I was in poor health, that I decided I needed to get healthy and speak out for myself.
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.
Finding a Balance Between CF and High School
Protecting your children with CF, at all costs, sounds like a loving thing to do until you consider what it may cost them. To keep a balance between their health and healthy childhood development, my husband and I have learned that it takes a prudent approach with careful and creative decision making.
There are many people in the cystic fibrosis community whom I believe possess hero-like qualities that I admire and who inspire me in my everyday life. I feel so fortunate for having crossed paths with them, and I very much look forward to meeting many more in this journey that I call life.
Time after time, cystic fibrosis has shown me that what I thought was important could change with changing circumstances.
As a real estate broker, I was already familiar with the first-time home buying process when my husband and I began our own house search. But little did I know that my CF would make me my toughest client yet.
These days when I post in any CF group, I read my posts several times over, making sure that I'm not incentivizing bullies to jump all over them. It's a shame that I have to waste hours each week concerning myself with how someone will interpret something I write.
I thought I would never get married -- I didn't want to burden anyone else with my CF. But, after meeting Ramon, we knew we wanted to get married and the only gift we wanted was time.
I often think about the woman who will eventually marry my son. I think about what she is doing right now and what her life is like. Although I can't wait to meet her, at this point, I'm also sad thinking about not being the number one woman in Major's life.