31 Days of CF: Becky’s Story

31 Days of CF: Becky’s Story

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Day 29 of 31 Days of CF ⁣⠀ Topic: A mother’s fear⁣⠀ ⁣⠀ This is Becky’s story: ⁣⁣⠀ ⁣⁣⠀ Let me start by telling you that this has been the hardest thing I have ever tried to share. Days upon days have been spent in tears, revisiting this because saying it out loud almost feels taboo. ⁣⠀ ⠀ There is a fear that has stopped me in my tracks at least once daily for the last eleven years.⁣⁣⠀ ⠀ From the very beginning of my daughter’s life I have had to live with the reality that one day I may watch her lose her fight. The moment I laid eyes on her I could not fathom a world that she wasn’t a part of. And within days of her birth, I have had to try & process the dark cloud of stats that looms over a CF diagnosis. And if she is lucky enough to surpass her life expectancy, I will still spend countless days watching her suffer and in pain while I stand by, helpless. ⁣⁣⠀ ⁣⁣⠀ The stats tell us less than half of CF patients live into adulthood. That many patients will need a transplant because of the damage CF does to the body. CF related diabetes, feeding tubes, and ports are a norm within the CF community. She will think nothing of taking dozens of pills and spending hours daily maintaining some resemblance of health. ⁣⁣⠀ ⁣⁣⠀ With every loss in the CF community my mind goes to this dark place. There is someone living my biggest nightmare.⁣⁣⠀ ⁣⁣⠀ I know that one day her body may be held hostage by a bacteria or virus that practically feeds off of antibiotics. I know that this can happen at any age and be potentially fatal. I carry the heartbreaking reality that she will at times fight for every breath. ⁣⁣⠀ ⁣⁣⠀ It terrifies me how she will process this for herself mentally?⠀ ⠀ I am most scared that one day she will be gone and I will have regrets. I didn’t take more chances or sacrifice more to make her wildest dreams come true. That more days and dollars were spent trying to do all we could to keep her healthy than were spent living; throwing caution to the wind because tomorrow isn’t promised. ⁣⁣⠀ ⁣⁣⠀ ⁣⁣⠀ I feel guilty that the stats haunt me because I do have hope for the future. But, she is my girl and it is heartbreaking to not be able to take this burden from her.

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One comment

  1. Beth Gopman says:

    You are not alone as a parent of a CF child. The family lives with
    you with this fear. We cannot outwardly express fear as we will bring life to the fear and upset all involved. So we face fear alone everyday.
    Which is better is the argument. Fear alone or fear expressed.
    This fact remains that many other people will die of unrelated causes to CF and our CF people will continue with life. The fact that we have real fear and eat this fear for breakfast, lunch and dinner will not change one minute of each day we exist together. We
    must accept the situation and not frighten the CF person. There is plenty of time for tears but today we celebrate life.

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