When the girls were little I made sure we didn't really interact with other CF families. I attended a couple of support group meetings in Virginia, but quickly decided that it wasn't for me... And, in making that decision, I decided it wasn't for us.
There was the mom, Jennifer, who had two beautiful little boys with CF. Her boys were in and out of the hospital, and she seemed to be that special kind of crazy reserved only for the mom of two children with CF. We were friendly for about a year. The thing I noticed was that she was SUPER focused on fundraising, which caused her to be SUPER focused on the disease and the tragedy of it all.
Then I met another lady in CF clinic. Danielle was two, and I was pregnant with Sarah. As we were talking, she berated me for being pregnant with another child who would be born with CF, and said (in front of her sweet daughter), "If you had been through what I had been through, you would never even consider having another child with Cystic Fibrosis."
I always wanted the girls to focus on the healing power of Spirit, and living the fullest life they could. In the girls' cumulative records through school rested a letter that said, "We live with CF, not for it."
My strength and emotional support came from other sources, and right, wrong or indifferently, I judged CF families as generally crazy and disease-focused and not the type of people I wanted to associate with regularly. I also wanted to save the girls from the pain of losing friends to the disease when we were struggling to put one foot in front of the other and live each day. Plus, when the girls entered elementary school, research determined that cross contamination between CF patients was seriously risky business. It was not encouraged, and in certain instances it was outright discouraged. Many CFers had to begin adhering to the 6-foot rule. (I wouldn't touch him with a 6-foot pole.)
However, as the years rolled along and the hospitalizations became more frequent, I sought solace, support, information, understanding from the Internet. And, in my searching, I found an amazing community. I became friends with a beautiful young lady named Lauren. She was incredibly faithful in her beliefs and did so much for the CF community. Lauren died at the age of 28. But, she gave me hope that my girls could go to school, work, get married and live life. Her life was a gift to me.
Blogging introduced me to Ronnie Sharpe who writes "Run, Sick Boy, Run". Ronnie established Cystic Life, which allows people connect and share information. I also connected with Piper Beatty who writes "A Matter of Life and Breath". Piper shared her transplant journey through not just one, but two double lung transplants. She is a brilliant writer and maintains an incredibly upbeat perspective no matter what is happening in her life..
Now the girls are older, and they make their own decisions about friendships and what types of support nurture them emotionally and spiritually. And, the Internet has opened up a world of connection that wasn't possible when I was struggling with my insecurities as a young mom of two children with significant health concerns.
The girls have chosen connection. And, with that connection has come the experience of saying good-bye to friends they have grown to love. It hurts, and it is scary. It is terrifying to watch friends die when you share the diagnosis. My idea about protecting the girls from the harsh reality of CF had merit. I was attempting to mentally stave off the scary, overwhelming reality of the disease: surgeries, oxygen, diabetes, lung transplant, coughing up blood, coughing up stuff thicker than blood, stroke, heart attack, depression, colon rupture, pain... I could go on. There is more, and there is probably even stuff I don't know lurking around the reality of what CF is... What CF does...
I need to say, though, I was wrong. I was wrong about thinking I could, or even that I should, try to protect my girls from the CF community. Yes, we have our share of crazy. (In fact, we qualify as some of the craziest...) But, my girls have become some of the most amazing, inspirational young women I know. And, they have developed relationships with some incredible people who are bigger than their disease. People who live happily, passionately, hopefully... People who humble me and help me to know that life is to be lived... BIG-LY. People who live with great love despite the challenges.