My youngest sister was a 25-year old Cystic Fibrosis patient. After two years waiting for a double-lung transplant, she got the call in December 2012, and underwent the surgery. However, her particular situation caused her to be on certain post-op medications longer than usual, and along with a nasty lurking rhino virus and a bout with septic shock, her new lungs became as damaged as her original lungs. My sister bravely and beautifully fought her way back to relative health as she awaited her second double-lung transplant. She basically lived at the hospital (along with our mom, her fiance, and two of our brothers) doing daily rehab, gaining back the weight she'd lost early in her recovery, making little crafts and jewelry and pieces of art for people, reaching out to people all over the world via facebook and her own blog.

This all suddenly changed in early June of last year, when she had a terrible reaction to a procedure... and (to make a long story short) within a week she spiraled downward. They tried several treatments, and finally one last outside-the-box option, basically a last ditch effort to turn things around. She spent several days in an induced coma; her numbers would look worse one reading, then better the next, and back and forth. She fought her last good fight with all of our family at her side, sitting with her, reading and singing to her, holding her hand, talking to her--until her numbers took a clear and apparently irreversible turn. She died the morning of June 17, with all of us gathered around her, singing her favorite songs, telling favorite stories, and holding her as she slipped away. She was one week shy of her 26th birthday.

She's no longer struggling, fighting, battling her own body and the cruelness that the beastly Cystic Fibrosis caused her. When I see butterflies, pink sunrises and sunsets, a bright blue sky, pink flowers, I think of her... she reveled in Nature, and pink was her signature color. She will never marry the love of her life and dance at their wedding--a dream onto which she long held. She will never travel to the places she longed to experience. She will not see her nephews and niece--all who she ADORED--grow up; and they will grow-up without her beautiful, loving presence in their lives. From the time she was a small child, she did everything that was ever medically asked of her. And she did so much more--so many extra things to maintain her health. She gave 150% to staying here, to loving others, to spreading peace and joy. She was Love.

I never, for one second, believed that she wouldn't make it home with new lungs and a new life ahead (at least for a while)... not until that mid-June morning when our dad came out into the waiting room--after a long night's vigil by her side--and said that her readings were definitively irreversible. This isn't how it was supposedly to be...

I used to adhere to the idea that if you believe in something, if you work hard, if you give it your all--you will overcome, you make it happen. It turns out that is not always true; and it certainly wasn't true for the one person I've ever known who deserved it the most... and I am heartbroken.

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Hi, your story broke my heart. I know you wrote this in 2014, just wanted to know how you are doing in 2019? How was the journey for you to healing?



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