Monday, April 13, 2009


Or perhaps the story begins, "We were traveling in Canada." That was the way our story, Robert's story, started for months and months.  We told it over and over again that way to as many medical students, residents, and attending physicians who would listen.  And they did listen.  They lined up at the door.  

Robert's first hospitalization was at Georgetown University Hospital, which is a teaching hospital, and Robert was an interesting case.  The pediatric practice that we had chosen for him is still located there.  I'm sure we were there for at least two weeks, but I can't quite remember. 

The things I do remember are wearing a deep pink t-shirt and brown clogs a lot.  The crosses with agonized Jesuses on them (Georgetown Hospital was run by Jesuits) that were in every room.  The glass breezeway that led to the MRI lab at night, dimly lit, reflecting odd angles and shapes, an echo of the hallway's interior, against the absolute black of one of the country's most exclusive neighborhoods after bedtime.  Foxhall Road and its mansions on one- and two-acre lots forested with trees.  Lying on the gurney with Robert as he was taken down the elevator to the surgical unit in the basement for various biopsies: a tiny body with a hep lock and IV with him at all times.

He hated the hep lock, which was held on with a board and spools of tape and binding.  His veins were so small that a PICU nurse had to be summoned whenever he managed to dislodge it, which was often.  Eventually, the hep lock went into a vein in his foot.  Then the other foot.

Robert was the most interesting thing that had happened to the peds rotation at the medical school for a long, long time.  Several medical students were devoted, of their own calling, to figuring this thing out.  Many more were sent our way to practice taking a case history.  People in and out of the room constantly, asking questions, issuing lab results, announcing that Robert had to have more blood drawn. Or a spinal tap.  Or an EEG.  Or something more dire. Even late at night, with the lights low and the pulse/ox barely beeping (we told Robert the pulse/ox clip with its red eye was his ET toe), a nurse would sidle into the room with the cart that held the blood pressure monitor.  To this day, Robert can suddenly slide into fits of hysteria if he has to wear a blood pressure cuff.  To this day, we do not know Robert's normal blood pressure reading.  It wasn't uncommon to get a systolic reading of over 200.  This alarmed some people.

Mostly, we admired his resistance.  To everything.  This showed heart, we felt.  This showed he was thinking.  He was planning his escape, as were we ours. Every once in a while, they'd let us take this large plastic red wagon, on which Robert was loaded and propped with pillows, out into the quad of the main Georgetown campus, when it wasn't too hot and people were feeling sorry for us.  We used to wonder how far we'd get before someone sent us back to the floor.

It was becoming increasingly clear that we were in exile.  From the shoppers and the diners on M & Wisconsin, from the friends who dropped by looking a little pale, from our families who seemed to occasionally feel that something rational could be constructed of this.  What had happened?  Surely we could figure it out or someone would know.  We were just asking the wrong people. Calls came in with theories and guesses--all of it well-received by us, but frustrating for the askers for whom there were no answers.  

As with a vacuum (and here, I am involuntarily thinking, 'before the wild hurricane fly, when it meet with an obstacle mount to the sky'), something must fill it. The developmental specialists arrived to assess each of Robert's extant motor and apparent cognitive abilities, assign each a value, and provide us with an average that issued a rough age for his various components.  They did not understand why I did not find this eminently logical.  That I found it specious upset them.  

My claims that Robert could, in fact, perform some minor action that he was not able to summon at the moment of the exam were met with pitying stares and the 'little mommy' treatment.  Although we didn't know it then, this kaleidoscope rotation of abilities was a feature of his disease.  Although I had two master's degrees and a doctorate, my analysis and observations didn't matter because I was a mommy, and, therefore, sentimental. I took this as further evidence of their incompetence and crafted a cloak of moral superiority for myself.

But we were traveling in Canada.  That's where we were, we realized, when this whole thing did start a day or two before it did.  We thought.  Droopy eyelids (sleepy?), reluctant to crawl (among rooms-full of strangers at an elaborate series of family parties), an odd fall, moments of infant introspection, a spoon self-held that missed the mouth.  

We were traveling in Canada. In a country so much like our own, but off just a bit, just a little foreign. 

1 comment:

Elizabeth said...

this strikes me as the beginning of a book -- such is the suspense and bang-up beautiful writing and description.