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    • #14135

      I want to introduce myself as a new Moderator here on CF News Today… But where do I even begin?

      I’m a columnist and a former journalist (you can see my columns here). I try to be an advocate for “Life in the grey” (living with CFTRD … Yes, I’m part of that rogue 10%!) I am a professional dancer and Artistic Director of a body-positive dance company (

      But here’s my confession: I’m a little nervous about this new job! I’m nervous because this community can be both beautiful and intimidating. Inclusive yet competitive. Connected yet isolating.

      So, here’s my thought, in order to get to know one another better and disprove some of my own misbegotten fears: How about we each share one of the most beautiful or surprising stories that has come out of being connected to this community?

      Here’s mine: One of my close friends April passed this year leaving two daughters and a lot of heartbroken friends behind. She was a generous, giving, once-in-a-lifetime sort of soul, though we never truly “met”. At her funeral, her husband actually included my fallible words about her on the ceremony program (which now hangs forever in my home). For all the dreams I had as a writer growing up, and all the jobs (like this one) I had hoped to have… I never imagined that the greatest honor of my lifetime will forever be that. No award, or book, or position will compare. Having my words mean anything- anything at all- in the passage of her life, and the purpose of her family, means more than anything else ever will.

    • #14144
      Jenny Livingston

        Bailey, wows, this really hit home. Before even finishing your post, I knew how I would respond and it’s somewhat similar to your story. One of my best friends passed away in 2016. At his funeral, his sister (whom I had never met) saw me from across the room, locked eyes with me, then walked right up to me and gave me a giant hug. She recognized me from pictures and Facebook posts, and I felt like I knew her already from her brother’s stories. It was really special to not only meet her, but to be able to comfort each other with an embrace that night.

        A couple weeks after the funeral, she reached out to me and we began talking regularly. I was able to offer her some insight into his life as someone with CF (things he and I shared about our health and this strange world of CF) and she told me more about his life as a child and teenager. My friendship with her has allowed me to keep him in my life in a way I never expected. And through her, I feel like I’ve gotten to know him in ways I never did before. She, and now his mother, are dear friends of mine. I cherish those relationships, and it’s strange to think that something so beautiful stemmed from something so tragic.

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