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The Anniversary

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

You didn’t know if my son was a democrat or republican.


You had no idea if he was black or white or some amazing shade of brown.

Did he come from a broken home? Was he poor or wealthy?


Chances are you didn’t even know if he was a boy.


They don’t give you these details when they’re requiring you to make one of the hardest decisions you’ll ever have to make.


You had no idea how long he’d been in need of a kidney…

That he was born with a rare condition slowly stealing his kidney function.


You didn’t know we had prayed for you, for your child, and for your entire family

since the day we heard the word “Cystinosis.”

Since the day the doctor so casually said,

“One day… he’ll need a kidney transplant.”


And truth is- I don’t know what your child had been through either.

I don’t know if you lived endless good days that suddenly turned tragic,

or if you’d seen this coming like a slow moving train.

I don’t know how long they gave you to make that seemingly impossible decision—

To say goodbye…

while somehow choosing to bless others in the midst of your deepest, gut-wrenching pain.


But I do know this:

You had a child.

One close to my son’s age.

And they must have had enough in common

that our team of specialists believed your child’s kidney was a perfect match.


They told me that. I’ll never forget it.


They used an imaginary scale, to help me comprehend. One to ten.

And it was nearly a ten. I still rate everything in my life on a scale like this. But…


Your child—

Your decision—

was going to give my boy another chance at living.


Are you Black? Are you privileged?

Left or right?

Christian? Atheist? Muslim? Jewish?


Do you love sweet tea and fried chicken on Sundays?

Would you sit down with us for chili and cornbread?


Truthfully?

I can handle a lot—

but not liking sweet tea would be a hard pill to swallow.

Still, I pride myself on hearing people out.


But honestly?


I respectfully… don’t care.

And I don’t think you did either.

None of that mattered on that night in June.


You just wanted to honor your son’s memory.

And I just wanted my son to live.


Neither of us—in June 2018- cared about any of the “differences.”

We didn’t see division. We didn’t see barriers or handicaps.

We saw possibility.

We saw life.


Total strangers.

Maybe polar opposites.

We’ll never really know.


But I do think the world should.


I want EVERYONE to hear.


I think they should know—

as we approach the seventh anniversary of this life-giving gift—

that no matter what happens in this messy, broken world…

no matter what happens in our lives…

I see you.


Your child’s life mattered.

It still matters.


And I want you to know… we’re not so different.


As we’ve celebrated milestones,

I know you haven’t.

I know you’re hurting.

I know you feel things I can’t begin to fathom.


I’m so sorry.

I can’t ever say it enough.

But I’m so grateful.


I’ve tried—

really tried—

to honor your child’s legacy in everything we do.


We honor you, too—

for the unimaginable decision you made.

We honor their memory today, and every day.


We’re forever grateful for your decision to donate life.

We are forever united—by love… and by hope.


I’m praying that wherever you are,

whatever you’re feeling as this day draws near—

that you know and believe in your heart:

Your child is loved.

Your child is remembered.

And your child is appreciated far beyond anything I can put into words.


Thank you for making that decision…

for seeing only… love.

ree

 
 
 

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