• To parents of newly diagnosed children

    Posted by jenny-livingston on June 7, 2021 at 10:50 am

    Three years ago, I was asked by a friend to help moderate a Facebook group for families with newly diagnosed babies. I posted a quick introduction with this short anecdote:

    I clearly remember when I was 19 years old, sitting in the hospital lobby at my very last pediatric CF appointment. A woman was sitting across from me with her baby. She had a binder labeled ‘What Comes After Diagnosis’ and she was sobbing into the phone. “They say its something called cystic fibrosis. I don’t know… it’s bad.”

    I knew her baby had just been diagnosed. I could see the pain in her eyes and hear the fear and panic in her voice. Part of me wanted to reach out and comfort her, but I was young and not very confident or sure of myself yet, so I sat there silently. I’ve thought about that day probably 100 times since then. I wish I was brave enough to approach her. I wish I would have the confidence to tell her that things would be okay.

    Since then, I’ve made it a bit of a mission to connect with the community and spread the message that even though CF can be incredibly difficult (and any unpleasant feeling you may have about it are totally validd), there are so many reasons to remain hopeful. We can, and do, live absolutely beautiful lives despite the challenges that CF brings.

    – – – – –

    That little introduction (something I imagined would be buried in the FB feed within days) is still actively being shared and commented on within this group. Just last week, a mother messaged me to say that she read and remembered these simple words of hope when they were first posted three years ago, and that they helped her get through some tough times following her daughter’s diagnosis. I don’t write this to toot my own horn in any way; what I hope for is a thread of encouraging messages from those of us who have been “in the trenches” for a while. Something that parents can read if they find themselves searching for some positivity in uncertain times.

    What are some words of encouragement or a piece of advice you would like to share with parents of newly diagnosed children? 

    William replied 10 months ago 1 Member · 1 Reply
  • 1 Reply
  • William

    Moderator
    June 20, 2023 at 8:22 am

    I would say that while it definitely is hard in the beginning, the future is absolutely bright and hopeful. A baby being born with cf is more likely to live a fulfilled, long life than ever before.

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