OCD in the hospital

A few more entries from my "journal" during our recent hospital stay with our lily, and then I'll try to get back to that "recovery series"!

Christie arrived yesterday, and with my two precious nieces quite literally cleaned our hospital room floor for me. Little hands spilled Christie’s entire water bottle, and both pairs of little hands helped mop up. They’ve been all over the floor and then all over everything else: lily’s bed, my bed, ann’s bed, the chair, the table, the hospital food tray… my brain finally stopped keeping track of the things that touched things that touched the floor. Once again, Christie and her babies have done my ERP for me.

* * * * * * *

The day before surgery, lily says: “This reminds me of ‘The Wild Robot Escapes’ when Jaya and Jad helped remove Roz’s transmitter so she could escape from Hilltop Farm. I’m just like Roz! I have to have my transmitter removed so I can escape from the hospital and get back to where I truly belong.” Lily’s story-loving brain is churning to process what is happening to her.

* * * * * * *

“Transmitter’s all out.” Dr. Matthew, Neurosurgeon, bends over lily’s waking body to whisper in her ear, coax her to wiggle her toes.

* * * * * * *

About an hour after arriving in PICU, she’s alert enough to ask:

“OK, but Mom, what’s it really called?” (She means, what she’s dubbed her transmitter).

“Well, I think the doctors said” (digging deep for the words I had to practice over and over) “it’s called a Pilocytic Astrocytoma.”

“Oh." And then with a sigh: "It’s hard work getting my Pilocytic Astrocytoma out so I can escape from the hospital and get back to where I truly belong.”

I remember they warned us she might temporarily lose her ability to speak. 

I ask her to take a shot at spelling the word I couldn’t grasp or repeat the first time I heard it, and she gets it pretty well right, just two letters off. Then,

“I hope ann doesn’t get it… or you or dad….”

My head buzzes, my heart thuds.

“No, no, this isn’t like that. It just grew in your special brain.”

“Is it because I like robots so much?”

Oh lily, you’re back. It’s really you, all you; their huge fingers didn’t slip, stayed steady, didn’t nudge any of your delicate grey gears that turn and churn out your gifts to the world.

And now I think you have glitter in your brain.