“Mr. Williams? Mr. Williams? I need you to wake up. Ian, I need you to wake up!”

The female nurse’s strong voice filtered through the hood from my sweat jacket. Sometime during the night, I’d drawn it up over my freezing neck and ears as I pretended to be my son’s advocate at night, while twisting on a creaky cot.

That’s not his night nurse. Is it shift change already? I tell myself and sit up so fast that I hear my glasses tink on the floor. Crud. Can’t even see to find them.

“You helping me rouse him?” The nurse’s voice was directed, this time, at me. “The doctor said to let her know if he’s lethargic.”

Ian had had a “tap and wrap procedure” the previous afternoon, meaning that his neurosurgeon had aspirated fluid from the area of his head from which she had taken a bone piece—something she called a “flap.” Afterwards, his head had been tightly wrapped in a turban-like fashion, all to determine whether he had become hydrocephalic and needed a shunt to drain the fluid.

The urgency of the nurse’s voice twined with my realization that the night nurse was a man were scary enough that I jerked up, wrestling blankets back to the cot. Stumbling to Ian’s bed, I assured her,  “Yes. Yes, I am.”

Recognizing the blonde charge nurse from the night shift affirmed my fears. She was lovely in a blowsy way, like the heroine in a Wagner opera. Corralling my thoughts about Wagner and why the charge nurse was standing over my child, I leaned toward Ian. “Honey, it’s time to wake up.” His eyes opened slightly.

That slight opening could’ve marked so many school mornings as Ian had grown up. An easy child to wake, Ian usually only needed the creak of an opening door to prompt a response: “’kay. Gettin’ up.”

This morning, I called. Minimal response. What do I say? Will a school reference trigger a wakening? Opting for that frame, I continue addressing Ian a second time. “Hon, you’ve got to get ready for school.” His eyes opened, wider. Eyebrows rose slightly. But then eyes shut, and the nurse left to report lethargy to the neurologist.

I finally pieced together what had happened

• The neurologist asked for any report of lethargy in the night—something I hadn’t been told.
• Ian’s cradle cap had gotten bad since his hair wasn’t being washed in the LTAC (Long-term Acute Care) unit. He had scratched his head the previous night, aggressively over the flap area. I had alternated between a comb and a cradle cap brush for an hour and a half to help him be able to sleep. At 11:00, I asked his nurse for Tylenol to help “take the edge off” so he could sleep.
• The nurse cleared Benadryl through the charge nurse and either a hospitalist or the doctor on all for Ian’s overall health, and yes, Ian was lethargic at 6 that morning.
• But he and I had slept.

Struggling to negotiate for information, especially when I don’t even know what questions to ask brings an indescribable layer of fatigue. Even when I realize that someone is launching yet another way to explain something, though, it’s as if the words roll off me like those sticky toys my kids would throw at the wall. Words stick a minute, then begin to drop, then stick ten minutes, then slide more. Ultimately, I can hardly remember who I spoke with, much less what was said.

The other piece of this fatigue is a choking kind of hope. Was that really a nod? Did he squeeze the nurse’s hand like he squeezed mine this morning (or was that two days ago)? And on and on. The fragility of this hope keeps it from bearing, buoying, supporting, or any other useful survival-type verb you’d want to add.

So what happened next in the lethargy saga? Ian’s neuro surgeon exonerated nurses. But still I had politely, dramatically—with quiet free-flowing tears—verbally accosted them: “I never would’ve asked for him to have Benadryl had I knowledge of the doctor’s concern with lethardy. I would’ve sat by Ian’s bed, combing his hair all night!”

Yes, as you’re guessing, more stuff had led up to and played into this scenario than I can tease apart. So, frightened and sleep deprived, I made pronouncements. I was beyond being soothed, and after making pronouncements, left the hospital and sat in my car, crying until I had neither energy or tears. When I returned, I helped to work on Ian’s hair. The night nurse was reassigned (fortunately, he wouldn’t have to deal with “one of those family members!”). The doctor affirmed that Benadryl or no, Ian needed a shunt, and we passed our day together with reading, physical therapy, occupational therapy, speech therapy, prayers, pink mouth swabs, and lots and lots of combing.

As I sit writing, I can hardly remember anything specific about the day. I just know that my head hurts, my eyes burn, the night nurse has popped in again to see if I need anything, and Ian has just closed his eyes. Another day ends with my not really knowing what happened today except that I can watch him breathe, his hands are relaxed, and I can almost remember him sleeping on my couch during a football game, his wife absently-mindedly fluffing his hair as she reads.

I crawl once more onto the cot, my every move punctuated by a creak. Fortunately, tomorrow brings renewed mercies—a good thing, as Ian really needs me to be filled with, regarded with, and framed with lots and lots of mercy.