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?”
“Yes.”
“What
were you doing when I held you?”
“Crying.”
“Why?”
“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?”
“No.”
“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?”
“Yes.”
“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?”
“Yes.”
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?”
“Never.”
“Has
he ever had problems waking up? Nausea?”
“No.”
“How
many times has he had anesthesia?”
“Goodness,
I’ve lost count. . . for this procedure? Seven, maybe. Overall. . . ten?”
“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.”
“Okay.”
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.
More of Nate's reflections on parenting can be found in Just Breathe



