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Transplant Day

  • Writer: fight4cystinosis
    fight4cystinosis
  • Jun 8, 2024
  • 3 min read

June 8, 2018 ….


A date forever etched in both my husband’s and my mind. We pulled nto the UF Health Shands Children's Hospital parking lot not even really knowing exactly where to go. All the phone calls, as numerous as they had been, didn’t seem to detail where to pull up and walk in. Apparently we had discussed every single other minute possibility and outcome…just not where to park. We needed something completely irrelevant to be frustrated at anyway so this was the perfect “typical” situation to make it feel as if everything was a normal occurrence and nothing huge was actually happening.


It was so dark when we drove up. 2am to be precise. I remember the vibrant display of colors on the building’s exterior being a stark contrast to the mood we were all feeling in the car.

We had been there before but only to meet the group of skilled physicians who would eventually do what we were there for that very day.


The first day meeting them was back in December. It was cold. Not Connecticut cold but certainly cold for Florida. Travis had hurt his back so badly that he could barely walk in the door. But as a determined father would, he dragged himself in to hear all their presentations.


So naturally everything felt different this time around.


The air was hot and muggy and my husband drove with ease free from any pain, thankfully.

We had mixed emotions to say the very least. We knew it had to be done and we knew it would give him a better quality of life, but it was still a terrifying experience to face as a family.


I can’t even begin to imagine what my 13 year old felt. I had no idea what he had taken away from that initial meeting in December. And truthfully, I was afraid to ask him what he really felt. I should have, though. I haven’t probably ever asked him enough questions…

But as I sit and recall the myriad of emotions we went through then, my heart aches and instantly falls for the family whose decision was decidedly much more cruel.


I promised Joel that every single year on this day I would honor them and if that only means writing down how I feel and what I am grateful for, then here I am.


I will never, ever begin to fathom the depth of pain, confusion, & loss a family felt just mere hours prior to us loading up our things and heading toward Gainesville.


How that one day, things were seemingly all normal in their little world, and the very next their beautiful 18 year old, with their whole life ahead of them… was snatched from this world and on to the next.


I won’t ever pretend to understand how they felt.

And I am ever so grateful still in the same breath.

So grateful they decided her legacy could be something more. That her presence would be felt far and wide, living well in other families for years to come. That in some small yet insanely significant way a little piece of her would continue to thrive and do great, big things.


How did they sign their names? I think the oddest of things at times. Could they even see through all their tears? Did they pause to rethink it all? Maybe reconsider altogether?


I am so deeply sorry for your loss.


And today I honor your daughter and your family for the selfless decisions in donating life. Because of her, my son was able to receive his first kidney transplant.

They’ll probably never know what it means to us and obviously that will never know what it means to us and obviously that will never negate all of their pain.


All I can pray is that today somehow, they feel the love and peace that I am so desperately praying they deserve. 💚


 
 
 

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