The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.
Having an atypical presentation of CF means I stand somewhere between the CF world and the rest of the world — and that makes me feel like I belong in neither.
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Life isn't always full of happy moments. Some are heartbreaking and some are crushing. But through it all, the life Kari and I shared together were the happiest moments of my life. I wouldn't trade them for anything. They were worth every second.
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Google has made it easy for everybody to research cystic fibrosis, but CF is only part of my story and how I tell it is up to me.
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I try to think of age as just another number. But as a spouse to someone living with cystic fibrosis, these numbers are frightening to me.
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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.
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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.
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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.