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.

Tumor

Note: this post was composed the day of the surgery, and published much later. To avoid confusion, I must direct you to the following post to find the happy conclusion to this saga! We are learning words like “resection”, “lesion”, “ataxia” and “Learmonth’s phenomenon”.

We pass them around like a hot dish of a grandmother’s brussels sprout casserole nobody wants to eat: “tumor,” “malignant,” “benign,” “the C-word.” 

“Brain surgery” is no longer one of Plato’s theoretical concepts, but something happening to our daughter, today. 

After that first scan I watched myself receive the words, “Unfortunately, we found something…”. I was surprised at my lack of panic. But then words came out of my mouth that I hoped never would, right there in front of my child. I was not prepared for this. I did not rehearse.

This morning I wake and the thought slowly forms in the pre-dawn as if from a script I am reading the first time, someone else’s thought: “lily goes for surgery today.”

I don’t know how to play this role. I can’t identify with this woman walking down this long hallway to the surgical suite beside a waif of a girl with a mass in her brain. I watch her and think, “That is the mother,” but I can’t imagine what she should be thinking or feeling.

The head surgeon, the one with the steel blue eyes, takes my hand in his huge one and fixes my gaze with his confident one. 

There is little to say. So I indicate the stuffy lily chose to keep with her and I say, without letting his eyes go, “She sheds glitter.” 

Pathology

The pathology report comes back.

Benign.

Christmas Reflections

Lily opened a window on her Advent calendar one day this Christmas and found the verse Isaiah 11:6. We talked about the strange image of these animals sleeping together with a little child for leader. “It’s talking about peace,” I explained. Lily was struck. She declared it to be her “new favorite verse--because I love peace.” It was a poignant moment for a child whose life had been much devoid of peace recently. 

Peace this Christmas meant being home together as a family. Peace meant having a routine. It meant gathering each night around our “Jesse tree” (a family tradition to review the Bible’s redemption story during Advent). It meant no headaches and screaming and vomiting. It meant no early morning trips to emergency, only to be told to go home and give a Tylenol. It meant no IVs and no nurse call bells and no pokes and flushes and vital sign checking. It meant Lily tolerated drinking and teeth brushing and bathing. Peace meant the simplest things, and it meant the world.

I barely did any shopping or baking or decorating or crafting or any of the usual hustle I’ve done around Christmas ever since I was eleven and awake to the drive, the search for that elusive “perfect Christmas”. I was amazed at how much rest there was in simplicity. I soaked in every moment of twinkling lights and silence and loved ones nearby, especially lily. Her bright eyes and vitality and creative spirit bathed everything with a new glow this Christmas.