
Uncelebrated Race
- fight4cystinosis
- Aug 28, 2024
- 4 min read
Updated: Sep 30, 2024
In light of our very BIG weekend dropping off Jonah at his new college, today I MUST share about Joel.
At 19, he is preparing to graduate high school& it’s a big deal. After spending YEARS pretty darn sick or just plain tired or both… after having not one but TWO kidney transplants, merely TWO years apart at ages 14 & 16…he is working diligently with a private teacher while still working nearly full time at Publix, as he has the past 2 years (this November will be 2).
Joel is quite possibly the hardest worker I know. He also might be the craziest & it’s no surprise no one makes me laugh like he does…
But today, I’d like to share a snippet of what I feel encompasses exactly WHO Joel really is.
A while back he committed to participating in a 5K with his Publix co-workers to benefit the March of Dimes.
Now in case yall don’t actually know us too well… we aren’t really the 5k type of folks.
In fact, you know that program “Couch to 5K”? We particularly enjoy the first half and haven’t yet crossed over to the latter. We’re happy folks though, so there’s that.
But notice I said “to benefit March of Dimes”. There’s your first clue as to what kind of young man Joel truly is. He’s a sucker for a good cause.
And to give more insight, in case you don’t know… one of the bizarre side effects of his condition is, he cannot properly cool down; meaning he could literally have a heat stroke with the temps we have been having even if he hydrates adequately etc.
He is fully aware of all the risks. He does not ignore them nor pretend they don’t exist. He chooses to fully live life around them. In spite of them….aware. Present.
That being said, I was indeed nervous of his signing up as I was, of course 8 hours away dropping his brother off at college. I was extremely busy which turned out good for my brain and anxiety. God is faithful like that on His timing…
But this isn’t about me. AT ALL.
When the 5K began, as was told to me by Joel, his close friend and another co-worker took off rather quickly and instantly Joel realized his friends might be taking this race a bit more seriously than he was.
Now don’t get me wrong, Joel took it seriously. He was absolutely determined to finish. However, he had zero intentions of placing on the higher end of the rankings.
So upon this realization, Joel hung back with some other co-workers and enjoyed catching up outside of work
One friend, he most especially enjoyed chatting with, as he had been transferred to a nearby store and the two hadn’t spoken in quite some time.
But then there was… let’s call him, John. His name is not in fact, John. But he does have a good, sturdy name similar.
John has Down’s Syndrome.
You wouldn’t necessarily know this straight away if you frequented the store where he works, necessarily.
He’s a hard worker. He is polite and helpful. He doesn’t smile too much or unnecessarily.
This is the reason I shall call him such a strong & sturdy name.
Oh how I despise the depiction of those living with Down Syndrome as being incredibly agreeable and overly smiling. It’s disingenuous at best. At worst… it’s plain unfair. How dare we expect and insinuate that simply because one has an extra chromosome they should inherently be forever cheerful? Insanely shameful. But I digress.
One thing I admire most about Joel is he will absolutely judge a person based on their character: NOT their abilities nor inabilities, intelligence or lack thereof, but simply for who they are.
And John? Well, he’s a good man. Joel respects him and his work ethic and he doesn’t care one iota that John has a rather dry sense of humor and doesn’t smile endlessly. I’m sure Joel quite prefers most people in this manner, anyway.
Despite John’s tenacity, he was falling behind at the 5K. Joel knew it was a struggle for him. It was a struggle for Joel, no doubt, but no one was none the wiser.
The group started to sift out and separate. Folks began moving along at a steadfast pace, steadily leaving reliable John far behind.
But Joel SAW him.
The kind of seeing it takes not with one’s eyes but rather one’s heart.
And there was no way Joel would ever in a million years leave John.
And so they walked. Together. And finished.
Probably not a lot of talking or banter during their steadfast walk.
No fanfare. No medal of completion. No ribbon or any such thing. A bottle of water and a pat on the back would have to suffice.
And for a mama that prays her kids SEE people….that her kids do so well in life they may not ever have a certificate or medal to show for it…
Completely uncelebrated.
Mostly unnoticed.
Well, for this mama. I couldn’t be prouder of what Joel didn’t get that day.
And if he runs a million more races and doesn’t ever receive anything… I’m ok with that, as well.
“Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.”
Hebrews 12:1-2




You see people. It does not surprise me in the least that your children have developed this trait. In fact, all of your children have this innate ability and choose to show it in different ways. The smallest one shows it with blunt statements of fact. Genuine nuggets of goodness she wants you to know and hear. The middle shows this in an unending well of kindness. This runner, I’m not in the least surprised he showed it in action. That’s always been his MO. And the giant of a man you call your firstborn child, he has an unending ability to be patient. All of them are lovely, and amazing, I’m so thankful I’ve been able to …