Learning that your child has cystic fibrosis can be overwhelming. You may feel sad, guilty, scared, or even angry, but you are not alone. We are here to help.
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.
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.
Cystic fibrosis can't take living away, especially when one loves life!
When my 8-year-old daughter with CF found out that the disease is potentially fatal, I was grateful for her optimistic views on life and death. But deep down, I was saddened with the thought of a cure being so far away that I wouldn't be around to see it. Today, my fears have dwindled.
When my two boys with cystic fibrosis ask me about death, I don't see it as something to be feared or ignored. Rather, I view it as an opportunity to share information about CF and the truths of life in an appropriate and honest way.
They say it takes a village, and this is especially true when you are a single mother of two who also happens to have cystic fibrosis. Single parenthood as a person with CF can be crazy, but being okay with asking for help can make it easier.
I knew that I needed to make a change when I began checking on home from the office and checking on work at odd hours from home.