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The Priceless Pink Plane

  • Writer: fight4cystinosis
    fight4cystinosis
  • Mar 23
  • 3 min read

The priceless plastic plane


She’s mentioned it several times on the nearly 5 hour drive there and honestly a few times, even a week prior to the plane being chosen by her, nonetheless.


Its seemingly insignificant role in most kids’ lives most especially these days, where digital screens and blue lights lord over playtime and imagination.


And I’m certainly no stickler for screen-free lives, so don’t think this is where I’m heading. Oh,quite the contrary. Cocomelon and some YouTuber who prances around an Anna & Elsa doll all over a Barbie-esque plastic world, who are affectionately called “Annia & Elsa,” have without a doubt, graced both our big and small screens more times than I care to count.


So, no. No sermons from me on anything of the sort.


But this was a prize.


And you absolutely HAVE to earn it. At our house you don’t have to earn screen time, so it’s not that special.


But here, it’s implied, you must be as good as you can possibly be. The threshold is different depending on the patient, naturally.


She’s been a patient for 7 years, now.


She is keenly aware and knows the drill.


“Sit as still as you can please, so the lab draw can go as smoothly and as quickly as possible.”


Yes, of course.


She understands.

She’s compliant.


Her feisty, chatty, bubbly, witty, little self… is now…


Quiet.

Still.

Internalizing.

Compartmentalizing.

And creating core memories, that I wish I could quickly steal and toss down the chute into a forgotten, desolate wasteland.


A made-up scene plays in my mind and it’s definitely me with blue hair and an oddly yellow dress frantically pacing and trying to sort through this mess to create a happy childhood, at least a happier childhood.

Something that resembles carefree….


But I cannot.


I do, however get the privilege of holding her close, rubbing her arm, whispering in her ears, “It’s almost over… the hard part is almost done.”


I get the honor of reminding her she can cry if she wants or we can talk. I tell her she can be brave or she can just… be.


And she boldly chooses her own combination… a path, if you will, that is as unique as she is and will be a part of her own journey and pieces of her own story.


At times, in her future mind, I suppose I will only be seen as character in her story, when to me, she seems like she is my whole entire world.

My absolute everything.


I want to fix anything and everything yet a deep, aching in my chest is all that seems to be…


It’s over. The numerous, tiny vials are now filled.


She glances quickly at them then even more quickly toward the prize box- the one she has asked about several times before today’s visit.


“Is it time?” she asks.

“Yes, sure. Ask him, since it belongs to him, but I believe you are most certainly deserving,” I say.


He confirms and confesses his shock that someone her size & someone who had to have that many vials filled, was practically statuesque for that length of time.


She hops down from my lap without looking toward me and gently pilfers through the small drawer of rather useless and pointless toys.


A pink plane is pulled and set apart from the other choices and she is confident in her decision.


“Please keep this safe for me, Mommy.”


Yes, of course.


While most mommies are proudly displaying their kids’ latest achievements of colored belts, ribbons of advances, trophies of accomplishments and report cards speckled with A’s…


This pink plane no bigger than my pinkie, shall be proudly displayed as it was earned with no less bravery and efforts.


Not awarded by merely requiring the seemingly simple task of sitting quite still for a few moments in complete uncomfortableness, but rather by the willingness to …..stop the tea party, halt the board games, pause whatever joyful moment was taking place, to make sure the meds that give the vials the answers they require, get taken.


So when you see a rather useless plastic, pink plane proudly displayed in our home- just know it was earned with the same dedication & perseverance of your kids’ trophies & ribbons. ✈️


ree


 
 
 

4 Comments


the3mcbees
Mar 23

What a brave little girl. I know it can't be easy on you either.

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fight4cystinosis
fight4cystinosis
Mar 24
Replying to

She really is so so brave. 💜

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leeanne172
Mar 23

Way to go kiddo!

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fight4cystinosis
fight4cystinosis
Mar 23
Replying to

💜💜

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