A mother worries that her son may lose access to crucial cystic fibrosis medication if proposed health care reforms are carried out.
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.
Sending our son to school was scary, but we have a plan to keep him healthy.
Our community's shared journey makes us unique and unites us in the hardest of times for some and the most hopeful for others.
Although not part of my son's “official” care team, our local pharmacist plays a key role in his cystic fibrosis care.
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.
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.