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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As the parents of two children with cystic fibrosis, we survived every parent's nightmare -- the loss of a child. Alyssa, our 29-year-old daughter, died in March 2018 after two failed double-lung transplants. We don't question why, because there is no acceptable answer. We just soldier on and fight for our son.
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Bonding With My Son During Daily Treatments
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Our parenting style wasn't something my husband and I figured out before our son was born. But given all the unexpected challenges CF throws at us, that flexibility has helped us grow as parents, able to change course if something doesn't work.
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I used to feel as if I was failing in my child's cystic fibrosis care. Here's how I learned to let these feelings go.
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As the mother of a child with cystic fibrosis, here's what I wish everyone in our hospital understood about my daughter and her CF care.
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Medical procedures -- even simple ones -- can be scary for a child. When your child has cystic fibrosis, managing the fear surrounding these necessary treatments can be daunting, but my husband and I have instituted five rules that seem to help.
