I’m the Lucky One, After All
- fight4cystinosis
- Jan 15, 2024
- 3 min read
I see & hear so many say they don’t care.
But, I actually do care when folks “unfriend” or “mute” or “block” me.
See... this “virtual world” just isn’t that virtual to me.
I have friends on both sides of the aisle & everywhere in between. I have friends that are Christian, folks that claim to be Christian but suck at it, agnostics, atheists, heck... even Baptist. 😂😂 (we call that a joke, Baptist friends).
But seriously... I hope you hear me out for just a minute.
I used to think most of you had it so very good. I’d see y’all in your glorious photos with your healthy 2.2 kids, perfectly groomed pups, and stately home that you’ve actually bought all by your big-pants self & I’d just think ... wow.
They’ve really got it all. 🥹
They have everything together.
They’re so adulty.
Normalcy.
That’s all I really wanted. Just a super healthy dose of normalcy.
I’ve spent a whole lot of time roaming the halls of various Children’s hospitals over the past 20 years. I’d get antsy & go seek out some sort of caffeinated drops from heaven, honestly rather hoping to “bump” into someone willing to talk. Y’all know me. I didn’t care what we talked about. I’d say random things like... did you find anything decent to eat around here today? Or I’d see them wearing a t-shirt saying their favorite team or alma mater & strike up some random conversation... I likely didn’t know a thing about what they were sporting, but I would be desperate for a conversation unrelated to medical woes & well... I love to talk. 🤷🏼♀️
But as luck would have it, invariably... they’d need a chat just as much.
But wouldn’t you know it?? Usually... about their medical woes. 🥴 So that’s exactly what we’d chat about.
It’s funny ...because I know good and well that they had family or friends they could reach out to, that had most likely already reached out to them, yet here we’d stand... spilling our guts out to one another.
Total strangers. Most of the time... polar “opposites”.
And I know for a fact I’ve had a Muslim care for my daughter.
I’ve had a Buddhist care for my son.
Black, white, all the shades in between... leftys, rightys, & whatever else is out there.... they cared for us. WITH THEIR WHOLE HEART.
I used to want to be like y’all.
But I realize now... I’m the one who’s lucky.
I don’t see all the things you see. I see a Dr going cross-eyed over the numbers my kid is throwing at him. I see him picking up the phone to call his colleague in a whole other country to find out what might be the best course of treatment for my son. I see him sweating when he opens the lab results in his computer every month.
I see nurses that I wouldn’t otherwise have a thing in common with holding my daughter’s hand and calming her.
Lab Techs bending down to pray before she sticks her. ray techs going the extra mile to make her as comfortable as possible.
A janitor cleaning our room just a little “extra” so we can chat a bit longer about his prized BBQ. I’m still ridiculously sad I never got to taste his award winning BBQ.
In here, my little world... we’ve got a lot more in common. In my world, we stop to pray for each other... we listen. We grab each other ALL the caffeinated things. In my world... we’re kind. We’re humbled by life’s curveballs. We see things…differently.
I thought I wanted in on y’all’s... but I’m seeing mine has always had a huge silver lining. Sometimes it takes a great tragedy. I don’t wish it on anyone, but if it means I’m a nicer human because of this life I live... so be it. I'm humbled and grateful.
***NO ONE is currently in the hospital.... ALL is well and these are just my musings…. 💜🙏🏻

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