I really, really hate this disease sometimes.
Sure, it robs me of my future, my breath, the time out of my day to do treatments, and makes far more decisions for me than I do the older I get.
But that is not what my true passionate hatred is reserved for.
That comes from when I watch people with CF, especially those that are significantly younger than me. Today Haley Palmer passed away from complications of CF at only 12. A year ago she was going on vacation, playing soccer, and living life to its fullest, the way any CF patient learns to live by virtue of their illness. In a short time her lung function tanked, rose again, then almost inexplicably tanked again. Usually lung function decline does not happen that fast in CF, but it doesn't matter... the killer that lives within me and thousands of others took another brave, and all too young fighter. As I spent the afternoon, reading journal entries about her life, she was flying up with the angels to God.
I hate this disease with the heat of a thousand suns tonight. It turns us into fighters, makes us love life, appreciate moments, be strong... but then it also always takes in the end. I'm okay with my fate that I'll probably die with CF... but Haley? She didn't even get the chance to go to High School, get a transplant, or reach the age of adulthood. I can't say that she didn't get the chance to grow up... CF forces kids to grow up in so many ways... yet we still are able to live, laugh, love, and have pure joy, something that many adults lose with the passing of the years.
I don't regret having CF. The lessons it's taught me are numerous. But even knowing that, I still am hurting tonight.
1 comment:
I'm sorry. I read of this too and had a big cry. And thinking of what her family must be going through, I hugged my kiddo super tight today.
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