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Underwear

  • Writer: fight4cystinosis
    fight4cystinosis
  • Nov 7, 2023
  • 4 min read

Updated: Nov 8, 2023

You know how the saying goes. We all do. Heard it a million times.


"A picture of a pair of underwear is worth a thousand words."

Or something like that.


I decided to clean his room which is utterly ridiculous because he’s 19 and completely capable and competent. I know even as I begin to toss away Cheetos bags that have been wildly torn into and Little Debbie wrappers that look similarly destroyed, that I am enabling his very over-the-top teenagery behavior by even stepping foot into this heap, but I am powerless to my own thoughts. If I could keep the door closed, perhaps that would work, but it stays open and practically whispers my name like a cheaply made horror film every time I walk past. I am pulled in and can no longer walk by.


Here I sit. I am now in the middle of Marie Kondo style piles of odds and ends, wondering how any of this could possibly speak joy to anyone here. I carefully separate important pieces of paper, a gazillion potato chip bag clips, lottery pencils… what? Why? And a plethora of obnoxiously small bits and pieces, most likely belonging to the not one, but two fixer-uppers he would have us call, motorcycles. Motorcycles at 19 isn't for the faint-at-heart kind of mama, yet here I am.


And somewhere in between the socks that Rex, his yorkie, affectionately chewed up while Joel's away working, and Rex’s diapers … what? WHYYYY? Anyway… between them, lie this old pair of sliced Hanes undies.


And I get that by now, you have no idea why at this point I’m sobbing into lottery pencils and dog diapers, so I’ll spare you the stressful suspense.


After both of his transplants, he sliced every single pair of his undies so that they would not touch the incision sight. Some were slightly sliced toward the left, some toward the right, depending on the year, that is. 2018 or 2020. Different years, different sides (incision sites).


I can’t begin to express the agony we all went through after what should have been a most successful transplant in 2018. But agonizing, it indeed was. EBV would become 3 small letters I would never ever want uttered together... ever. Can I say ever one more time? I love so many other 3 letter acronyms like LOL and TBH. Oh gosh. Who am I kidding. I apparently have disgust toward all 3 letter acronyms.


We lived in and out of the hospital and even now, it’s a blur. Thank God I have endless footage of the kids or else I honestly would have no recollection of what even transpired during that timeframe.


Now you know why I have so much old footage of Hannah. It brought me immense joy. IMMENSE. I recorded EVERYTHING. Conversations with her were often a relief and kept me in a state of calm and joy to better tackle the task of a very concerned mom for Joel. It was like going for a brisk fall walk and clearing your mind..with no outdoors because..Florida.


It's incredible and haunting, at times how old, tossed aside belongings or photos or even a smell of some sort, can jolt you back into a completely different time. And that's exactly what happened. Flashbacks in my mind's eye continued rolling on like watching a recap of my favorite Gilmore Girls episode. But this was a different kind of nostalgia. It hurt and stung, deeply. Yet, in the same breath, such overwhelming gratitude for a donation of life. Not once, but twice.


And I needed that cry.


It was hard. Some of the hardest. And frankly, our family isn't strangers with hard. At times, I've wondered if we're trying to medal in "hard" like it was an Olympic sport.


But here we are. Standing. All together. It's a miracle. One for the record books... like some sort of records they'd keep at the Olympics or something.


We've been diligently running this race but not ever once did we do a solo sprint. We sure tried though and quickly realized we need to let God go before us.


I don't ever pretend to know how anyone can go through anything devastating or life altering in a frightening way, without Him. Call it a crutch, if you'd like. I'm old enough to not be offended and yet old enough still, to know it's true.


If you're going through something that's making you feel as if the very dirt beneath you is eroding like waves washing away the sand between your toes on the shoreline... I know the One Who holds the anchor.


This life is full of surprises. Many, aren't happy little birthday surprises, like the coffee I just got in the mail from a dear friend. But I digress. If you find yourself in the middle of an ugly storm whether tangible, or not so much, I'm here to say... there's hope.


Come along. Join me as I either make you feel better about your own, seemingly normal life...or, offer some sanguine thoughts on where to turn if things are a bit rocky.


Perhaps if I'm being honest...I just needed a space to use words like "sanguine."


My hope is that here, in this little space, you'll laugh and know... you're never alone.

 
 
 

1 Comment


graymer8
Nov 08, 2023

Beautiful. Can’t wait for the next episode 💗

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