My husband and I spent our first weekend as parents contemplating the news that our new son had cystic fibrosis. Although we handled it in very different ways, we were ultimately able to overcome the initial shock, with an entire team to help us along the way.
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Before my daughter's most recent clinic appointment, I took to social media and asked for tips on getting your child to start wearing a mask. Here's what worked for us.
An Impact Grant from the CF Foundation allowed my program, the Mothers' Retreat Program, to provide a space for moms of children with CF to get together and learn new approaches for addressing self-care, anxiety, and depression.
My husband and I tried everything to encourage weight gain in our young son to no avail; so we chose to get him a gastrostomy tube.
When our daughter was born with cystic fibrosis, we knew that our older son's brotherly duties would be more complex than we had originally anticipated. But, as our family has grown, I have complete faith that while their needs may be different, the love we give these two amazing children will always be the same.
Caring for somebody with CF used to be a lonely journey. But that changed after I attended the first Volunteer Leadership Conference (VLC). I have attended the conference every year, and this year as a co-chair of the 15th VLC, I'm welcoming everybody to livestream it so we can share and learn together.
Cystic fibrosis forced me to drop out of high school. After earning my GED, I'm in college and more determined -- than ever -- to finish.
Over the last 10 years, I've gone from only interacting with local people with cystic fibrosis to joining hundreds of people with CF around the world to help build an incredible online community. This community has helped me through hard times, and I can't wait to see what we do next.
When it comes to my cystic fibrosis care, some might say that my situation is a bit unique. Although having not one -- but two -- CF care teams can be challenging, I strongly believe that has made me a better, smarter, and more engaged patient.
As a teenager with cystic fibrosis, I always felt that my body was different, and therefore, shameful. But in one day, I had a change of perspective that allowed me to love myself and appreciate how far I've come in my journey with CF.