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The Last Visit

  • Writer: fight4cystinosis
    fight4cystinosis
  • Feb 16, 2024
  • 3 min read

I have nothing to commemorate this day.

I remembered to take zero pictures.

I brought them nothing. No thoughtful, heartfelt note, no tray of cookies. Nothing. Honestly, it was all very unlike me. I know Dr U’s son LOVES my chocolate chip cookies and I KNOW Nurse Rachel loves my blondies. I know all of this very well. We know each other, very well.


You could even call us a team.


But, I didn’t even go into the appointment room on this day. Again, a stark contrast to the mom and team player that I am on any given day, but most especially on "check-up day."


And all along, here we've been a team since December 2017.


I’d like to think I am a part of this distinguished team, anyway, but if I’m being completely transparent, I’m most likely “that one player” who swings far too early every single time at bat or the one who runs frantically to first base when it’s clearly foul to everyone else but the batter.

Jumping the gun.

Running without direction.

Not always listening intently to the coach.

Not following all the signs given to me.


Nevertheless, they see me. They "get" me. They're seasoned coaches. And this isn't their first season, by far.


They know I’m dedicated. I’m a solid player in this game and I’m trying my best to understand terms, slang, and an infinite list of acronyms. Not like the ones I was so accustomed to: RBI, ERA, or AVG. No, that would have been exceedingly too easy. I faced the daunting task of learning terms like PRAs, CKD, ESRD, and the dreaded EBV, that still to this day, makes my stomach and brain hurt all at once and makes me feel like I'm spinning wildly out of control.


They calm me. They ground me. They’ve said repeatedly that they’re here for us. And they meant it. Every single word of affirmation, they meant. EVERY SINGLE phone call, email, text, and message sent through the portal … was answered. You possibly cannot fathom how many messages one particular team player can send. A trophy of sorts should be awarded to said player or more appropriately, them. Astonishingly enough, they replied faster than I should have ever expected or would come to expect.


If I’m being truthful … they spoiled me. So, I partly blame them for my peculiar behavior earlier today.


I didn't want the team to break up. This one hurts far worse than my favorite player being traded elsewhere.


Maybe if I didn't bring cookies or a write a touching card then they would understand we're not ready... I'm not ready... and right back through their small appointment room doors, we'd all walk. Ready to face another season as a team.


But here we find ourselves in a whole new season.


I never in a million years expected to find solace in our physicians and nurses… but God.

He carefully & thoughtfully placed them in our lives at the most critical, yet challenging times we would face.


They hugged me while I cried. They listened while I droned on the telephone, spiraling down numerous rabbit holes, trails of tears, and mostly unwarranted fears, clearly from the depths of my mama heart.


They understood.


They became family.


I suppose I will never know exactly how they thought of us… but we felt loved for. Cared for. Heard. Supported beyond words.


I have a sneaky suspicion others on their team feel precisely the same way.


Special.


Our family has grown and changed beyond measure in the 6 years since we formed this team. Our lives will never, ever look like they did before we met..


“Our Team.”


And I suppose that’s ok. Our rookie of the team? Well, he’s an adult now.


It’s time they moved him up to the big leagues, full of adult coaches (AKA physicians) sans the “one player” that consistently swings too early.


Admittedly, I am a bit slower now. They taught me that.

To take a deep breath. Let go a little bit. And trust.


My “role” will and should look different now.


I will have to trust that the “team” helped prepare their next rookie on deck, to knock it out of the park,

solo style, with his new team cheering him on, albeit from the sidelines.


My love and appreciation for this team, the one we’ve had for all of Joel’s teenage years, through 2 kidney transplants, and enough ups and downs for a Lifetime Movie special…might just be one for the Hall of Fame.


I pray you all, always... absolutely ALWAYS, know I am forever grateful for the care, support, and underpinning of medical knowledge we needed and received so very well, to go off into the big, adult world…. successfully.


ree





 
 
 

1 Comment


leeanne172
Feb 16, 2024

The end of an era. You get to be a supporting role now. :).

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