I have found that the limits cystic fibrosis imposes on my life are a bit like weather forecasts -- open to unexpected changes. Whether by hard-fought scientific advances, thoughtful (personal) planning, creative thinking or sheer luck, many of the limits of CF now come with beautiful possibilities attached.
Starting at 6 months of age, I began my daily journey battling my chronic illness, cystic fibrosis. And now, at 28, my heart is heavy because one of my nearest and dearest caregivers passed away unexpectedly … my father.
Hollywood often portrays people with serious illnesses as brave, inspirational characters. I don't always feel that way, and sometimes the real "fight" is facing that fact.
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.
Some days, the biggest struggle I have is accepting that I have CF.
Although my lung transplant was the end of one story, it was also the beginning of another, more difficult story.
CF demands a parent's time, but childhood lessons taught me that all of my children need my love and attention.
Living with cystic fibrosis, your dreams for the future can be a little hazy. But while attending my grandmother's 90th birthday celebration recently, I was struck by an image of myself that I had never seen before: myself in the distant future.
Living with cystic fibrosis is a constant reminder of the things that have been taken from me. I feel like I've made a bargain with the devil, so to speak.
Finding a Balance Between CF and High School