I would not wish a chronic disease on anyone, but it certainly does give a person perspective and appreciation for life. Joe and I have two girls with cystic fibrosis (CF). Molly is 20 years old and a sophomore in college in New York. Emily is 17 years old and will be heading to college in the Fall (probably out of state too).
Our life isn’t picture perfect. Our girls are best friends, but do fight. The laundry gets backed up, and the house is certainly not always clean. But one thing we do on a daily basis is LIVE. I want our girls to live life, dream big and don’t let CF hold them back. They are living life with CF.
I have always told the girls: Everyone has something we just have CF. No excuses; we’re not suffering anymore than someone else. Of course there are many times over the years we have broken down, frustrated and sad by the challenges of cystic fibrosis. Usually once a year we pretend they don’t have CF. It’s freeing for them, and great therapy. Molly and Emily are mentally strong, “We do what we have to do and move on,” they say.
I promised myself when they were babies I would not hold the girls back because of my fears. Both of my girls have been involved in one sport or another. One particular year Molly had a picc line (I.V.) so she could do her intravenous drugs from home and fight off the pneumonia. It would be in her arm for three weeks. She had ski club, was in middle school and wasn’t going to be stopped from zooming down the hill. I was worried about her skiing with a picc line, but she was not. So off she went in the bus to the snow hill. I immediately got on the phone to the ski hills health clinic and told them my daughter had a picc line in her right arm—should anything happen! She was fine that day and has gone on several ski trips to Utah and Colorado with her sister.
Emily is the sicker of the two girls. When she was in 7th grade I thought she might die after a high fever and new bacteria in her lungs. Emily has suffered eleven cases of pneumonia, a broncoscopy, and numerous other challenges over the years. She’s missed school dances, school trips and family gatherings. So when she said she wanted to go on a mission trip to Nicaragua with her religion class I was shaking inside. I called her CF doctor and she said if her health was good she could go and that she’d send along some medication incase she got sick. Of course she could get some strange “bug” there and get deathly ill but I could not keep her from going because I was worried about what might happen. It’s a hard place to get to, to let them go. Emily had a fabulous trip and came home with story after story about how she was so touched by the Nicaraguan people. She wanted to save the world.
My girls are glad they both have cystic fibrosis (as opposed to one having it). They can relate to each other’s struggles, do treatments together and support one another when they’re hospitalized. The key for us is to talk about CF. Molly and Emily joke with one another that they’re going to die together like the couple in the movie, The Notebook; holding hands. They laugh, act silly, and sing together all the time, even via Skype. They live!
~Submitted by Laura Bonnell (www.thebonnellfoundation.org)