If you're the parent of a child with cystic fibrosis, you probably know the worry that comes along with sending your kid away to summer camp. To ensure that my own kids with CF were cared for at camp, I wrote the following letter outlining their special medical needs.
Parents of teens with CF often ask what they can do to help their child who is struggling to come to grips with their disease or is simply going through a rough patch. Here's some of my best advice.
As parents of kids with CF, we can make a life-transforming difference by focusing as much on their mental health as we do on their physical health. If you think your child's CF is taking an emotional toll, asking yourself these questions may help.
Protecting your children with CF, at all costs, sounds like a loving thing to do until you consider what it may cost them. To keep a balance between their health and healthy childhood development, my husband and I have learned that it takes a prudent approach with careful and creative decision making.
At a CF care center visit, I realized that I needed to step back so my daughter could step forward.
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.
Before I had my son, I had organized my life in such a way that everything flowed in orchestrated harmony. But I found that as he grew I allowed his needs to eclipse my own, and my life soon fell out of balance.
In the two and a half years since our son's cystic fibrosis diagnosis, we've learned how to build his care into our daily routine and manage his disease to the point that it's almost become -- dare I say -- normal. Here is a list of the top 10 things that are stressing me out more than my son's CF right now.
Over the years, I have received some tough questions from children with CF, but one has really stuck with me. And if I were asked it again today, I know exactly what I would say.
I read the blogs and stories parents write about their compliant CF kids, I hear CF adults speak about never missing a treatment or medication, and despite my best efforts, I am fighting a battle I never imagined with Betsy.