Not So Silent Nights

It’s not the clearest picture. And I don’t even fully know how to share the jumbled mess that is on my heart and on my mind...

When I hook her up to her machine at night, it gets a bit quieter around here. Y’all cannot imagine the word count she clocks in on the daily! At night though, my mind wanders like it’s nobody’s business.

The beeping can be loud and the humming of the machine can be repetitive and slightly intrusive to my REM, but it's still a much different "quiet" than my days.

It’s been a long day. The kind of day you just want to sink into a warm pink fizzy bubble bath or make yourself a drink of some sort. Well, I don’t have time for baths & the only drinks I dare touch, come from magical little beans...hence my ramblings on here.

She’s getting pretty used to all this which is good & sad all at once. I hate that she’s used to this, but I’m glad she no longer yells at me to “take it out.” She’s a feisty one & I have a love/hate relationship with her machine. It's literally a lifesaver but also a huge pain.

Her brother is a bit like her, too. Or I suppose she is like him? The one that’s fighting much of the same battles. He's just a little further down in the journey. He's 19. And honestly I'm kind of waiting for a Medal of Honor of some sort, for making it this far, in the teenage years with him.

My heart isn’t prepared for any of this.

Let me tell you what they DONT write books about. Any darn thing I’m feeling right about now!

Years ago, "the experts" used to tell parents who had children with Cystinosis that they might not live to their 10th birthday. 10th. I’ve heard this same story from far too many of the other adults living with this disease & I can’t fathom how their parents must’ve felt receiving this revelation. What fears they had swirling in their minds as they lie down their heads each and every night after their own homes had gone silent from a busy day....

So, although I’m tired & although my night shift is just beginning & subsequently my day didn’t exactly go as planned... I’m so overcome with gratitude that the perfect words escape me now.

Except... I kind of want coffee now.

And I'm grateful. Always ridiculously grateful.