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
Don't let the internet fire hose of CF information overwhelm you. As a mother to two children with cystic fibrosis, I can give you some tips on avoiding common pitfalls.
For parents of a child newly diagnosed with cystic fibrosis, it can be scary to read what's online about CF. However, I want to shed some light and positivity on what it's like to have CF. Everyone with CF is different, and it's possible for your child to lead a full life.
Spending summers at sleep-away camp helped me become more responsible, and allowed me to see CF clearly and accept it.
After my son was diagnosed with cystic fibrosis, I was stunned by some of the insensitive questions and comments I received from friends and family. Over time, I learned that their unsolicited feedback provided teachable moments that I hope to pass along to other families.
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.
Using social media helps me cope with raising a child with cystic fibrosis, but I have to remember that it's not just my story I'm sharing. Here's how I make sure I share the right parts of my son's CF journey.
I wrote this poem to my daughter as I watched over her in the hospital.
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.