Monday, April 25, 2016

I know that hour

There comes an hour when begging stops,
When the long interceding lips
Perceive their prayer is vain.
"Thou shalt not" is a kinder sword
Than from a disappointing God
"Disciple, call again".

Emily Dickinson, poem first published 1945

Monday, April 4, 2016

Real horror

As a young child, I had a strange recurring nightmare.

We were at the mall - my mother, my sister and me. The three of us ventured into the nurses supply store, which in itself was strange because no one in my immediate family worked in the medical field.  

The cheerful store clerk in my dream told us we should lay down and be pushed through a machine that she cranked by hand, as a conveyor belt fed that person through the covered part of a massive machine unit.  My mother laid down first, almost as if she were hypnotized to do so, and was calmly processed through the machine.  Everyone was smiling when she came out, a totally flattened, still alive, version of herself, on the other side.  My sister seemed perfectly happy to comply with the clerk's suggestion that she lay down, and to my horror, she was next to be squashed.  They held hands, my flattened mother and my flattened sister, and told me with paper doll smiles that I was next. 

I remember the dream going as far as me reluctantly laying down on the conveyor belt, before the disturbance of my own thrashing (presumably) woke me. 

My family teased me about it, because it was surely irrational, but for years I didn't like being in the vicinity of that store front.     


Just six days prior to this photo, Zachary was healthy.  Had just regained his birth weight.  Was breathing easily on his own. 

This photo was taken the day before Zachary died.  He had been suffering for more than five days, and was in a state of medical paralysis, on life support and many other life stabilizing medications, for almost three full days.

We needed a team of two to three people, usually including a respiratory therapist, to turn and prop him (and his ventilator) with blankets and towels, in a new position every few hours.  When he looked uncomfortable to me in between those times, if there was some impingement on any part of his body which might have materialized in skin breakdown or painful denting in his bloated body, I called his nurse to help me carefully move him again. 

On that Sunday morning, we were shifting Zachary around, and also trying to sponge bathe him, especially in the areas where the edema forced skin to lay on skin (where it otherwise wouldn't).  The respiratory therapist held his ventilator in place while his nurse gently rolled him to his side so that I could wash his back and neck. 

I froze, horrified beyond my pre-existing horror.  His back was flattened.  Indented, as if by a hard cover book.  It was as if a force had pressed onto him, held him there.  For days.  For weeks.  His skin was swollen, and hardened, all around the edges.

He was smashed.  My poor baby was suffering, soon to die, and now, he was flattened. 

While his nurse heaved and sighed at the sight, I wept and wept and wept, and steadied my shaking hands to wash the flattened parts of my beloved boy.  I kissed him and whispered to him again and again how sorry I was. 

I wanted to run.  I wanted to run up and down the hospital halls and scream at the top of my lungs about the torture he was enduring, about the neglect I suspected had led to such incredible suffering and such a devastating end for Zachary.  I wanted to disappear, to relinquish the responsibility I had, as his parent, to absorb all the horror unfolding upon the body and spirit of my son.  

But I couldn't run.  The next day, I'd have to be there for him as he died.  And now, every day, despite the life going on all around me, I remember and live with the horror that happened to Zachary.