When my daughter was diagnosed with cystic fibrosis, our nurse -- in what I suppose was an effort to find the silver-lining of chronic illness -- said, “Welcome to the family.” She went on to explain that families affected by CF are a tight-knit group, but I'd stopped listening at the words “cystic fibrosis.”
I have a family. They are supportive and wonderful and kind. I didn't want to be conjoined with strangers only because we happen to share the same crappy genetic luck. I wanted to say, “I don't want your family; I just want my child to be healthy!” I wanted to tell her she could shove that “happy family” up her bedpan.
When parents are given the diagnosis that their child has a chronic, and sometimes fatal, disease, “welcome to the family” is one of the worst things one can say, as if we'd just won a lifetime supply of bubble gum or a VIP package on a tropical cruise line.
Cystic fibrosis is not a sing-along. It's not the Mickey Mouse Club or a punch card for a theme park where guests ride the lung transplant roller coaster or pancreatic insufficiency merry-go-round. Who would want that card on their keychain? No one would join the genetic defect on chromosome number seven association or the inherited chronic disease family. Woohoo! No thank you, ma'am!
Fast-forward 13 years. Fast-forward to feeding tubes, bronchoscopies, a thousand medications, and hours of respiratory treatments every day. Fast-forward to spending sometimes 20 hours a week on the phone with insurance companies and pharmacies. Fast-forward to living life, traveling to Hawaii and the Bahamas, swimming with sea turtles, and climbing mountains. Fast-forward to soccer and swimming, surfing and Girl Scouts. Fast-forward to a healthy child.
Fast-forward to daily communication with other CF families, relying on their expertise about living with the disease that you can't get from a medical professional alone. Fast-forward to following the lives and deaths of people who you have no relation to, other than the fact that we share this disease. Fast-forward to sobbing at the computer when a girl whose spunk reminded me so much of my daughter lost her battle at only 25.
Fast-forward to this week. In the process of changing insurance companies, the lapse in coverage meant a lapse in medication. Out-of-pocket, just one of her lifesaving drugs costs $4,000. Fast-forward to a quick message to my local CF mom's group. Fast-forward to three minutes later, when seven people offered to donate their meds to my child.
Fast-forward to a community of hundreds of people, some I've never met, but who know more about me than my closest friends.
Fast-forward to grieving the losses of children and young adults who left us before the cure came. Fast-forward to the walks and fundraisers and new medications that promise hope for a long life and a cure. Fast-forward to thousands of people who know, like no one else, what it is like to breathe this life, to fight this battle, to ride this ride. These strangers and friends, I could not live without. I never wanted them. I hate what unites us. But I love them dearly. They are my family.
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