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.
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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.
Today I am proud to introduce More Than CF. Your struggles, your achievements, your routines and the small surprises of your every day breathe life into the Foundation's work. You can get involved by sharing your experiences with us on Facebook, Twitter and Instagram and by searching #morethanCF.
Many individuals and organizations are out there serving people with CF and their families in their daily lives. Through the new Impact Grant program, the Foundation will fund individuals or organizations who have a program or project that benefits the community.
There are a lot of misconceptions about illnesses. For one, you're supposed to look sick -- or like other people's perception of a sick person. Once I started to doubt myself and the gravity of my illness, I began internalizing a whole lot of guilt.
I recently attended the Cystic Fibrosis Foundation Lung Transplantation Summit. Many of the areas for improvement cited by the experts matched what I have seen as the mother of a two-time double-lung transplant recipient.
March on the Hill brings a mix of new and familiar faces to Capitol Hill every year. The connections and stories that our advocates share with their elected officials are making lasting impressions that impact the entire CF community. And as this event has grown, so too has the cystic fibrosis story.
Sometimes during weak moments, when my lung function has dropped despite doing everything in my power to hold off the destruction, I think, “What's the point?” Then I remind myself of the larger goal …
Cystic fibrosis can't take living away, especially when one loves life!