I placed my hand on Isaac’s chest, palm directly over his heart, fingers splayed out around his ribs. He responded with a deep inhale. I felt his chest rise and then fall as the long, slow exhale followed. Quietly, I asked, “Do you remember when I held you like this?”
“What were you doing when I held you?”
“They just take the mask and push it tight on my face.” He shaped his fingers into a little cup over his mouth, and then made a push against his face, holding it there with force.
“Did it hurt?”
“Were you scared?”
“No. They just push it too tight.” He made the pushing motion again.
“They need to push it tight to help you sleep. Do you remember the silly medicine?”
“The silly medicine will make the mask okay; it won’t bother you.”
“But it taste gross.”
“I know. That’s why we let you pick. You can say no silly medicine, but then you might cry with the mask.”
“No silly medicine.”
“You are okay when you cry?”
That morning the alarm had gone off at 5:15. I stumbled around the room, coming to grips with the task of dressing both silently and in the dark. Peeking out the window, I saw that a few inches of snow had fallen overnight. Nicole was nursing a broken foot and couldn’t chance a slippery surface. I’d have to clear and salt the sidewalk and driveway before leaving. I should have woken earlier. Now there would be no time for coffee and breakfast. There was a release with the realization. Isaac hadn’t eaten since dinner, and likely wouldn’t eat again until Noon. I always feel guilty, waking up before him on these days to eat without him seeing.
Isaac, clad in a miniature purple gown, watched a movie, while a nurse anesthetist ran through a series of questions with me. For those trying to keep Isaac asleep, but alive, the specific details of his cerebral palsy are important. This nurse had never worked with Isaac before. The conversation went longer than usual.
“Has Isaac ever had issues with anesthesia?”
“Has he ever had problems waking up? Nausea?”
“How many times has he had anesthesia?”
“Goodness, I’ve lost count. . . for this procedure? Seven, maybe. Overall. . . 10?”
“How do you think he would do with a pre-med?”
“He can struggle with the mask, but hates the taste of the pre-med. I’d skip it.”
The nurse made his way to the door, where he met Isaac’s rehab doctor, prompting another conversation. We were there for chemodenervation, or botox. We were there to destroy the nerves in Isaac’s legs. The anesthetist wanted to know how long it would take. Botox takes minutes, but the rehab doctor would be followed by an orthopedic team, wrapping each leg in a cast following the injections. Isaac’s muscles would be loosened by the loss of nerve cells, his tendons by being casted in a flexed position. In two weeks, the casts would come off. With legs loose and free, Isaac would work through weeks of intense physical therapy, until the effects of the botox began to fade and the muscles tightened again. He repeats this cycle three to four times a year.
With the questions asked and paperwork signed, I walked behind the bed as Isaac was wheeled down the hallway and into a room filled with masked figures. A member of the team pulled me aside to run through the plan once more, but our conversation was interrupted by a muted scream, like someone being smothered under a pillow. I looked over and saw tears streaming from Isaac’s terrified eyes, as the mask was pressed against his face. One of the green-clad figures stepped out of the way and offered, “Dad, maybe you want to slide in here.”
I made my way up alongside of the bed, placed my hand on Isaac’s chest, palm directly over his heart, fingers splayed out around his ribs, and told him, “I’m right here, Buddy. Look at me.” He locked eyes with mine. “Deep breaths, Buddy. Nice and easy.” Under my fingers, I felt him fighting, trying to obey and bring his breathing under control against the panic.
From behind, someone assured me, “We are in the window of amnesia, Dad. He won’t remember this.”
I vaguely nodded, but didn’t turn. “In and out, Isaac. Nice and easy.”
The muted crying faded. The tension in his chest melded into a steady rhythm. His eyes lost contact with mine and began to drift, then rolled up into his head as his body momentarily twitched and jerked. I kissed his forehead, and whispered “I love you.” He was asleep.
Nathan Hackman is a stay-at-home dad to four boys, one with cerebral palsy. He writes about the amazing adventure of parenting with a few extra challenges. In his free time he . . . doesn’t have free time.