If you want to find out how I ended up at the E.R. of The Montreal Children’s Hospital with my three year old son, Ben, waiting for a room in the neurology ward you might want to read The Smell, or My Son’s Brain.  

It was now early evening and the E.R. at The Montreal Children’s Hospital was crackling with the incendiary energy of sick or injured young children who had missed their naptime. Ben had no memory of that morning’s twenty-second smell hallucination. He was cranky, and starting to crash from vending machine junk food.  All he wanted to do was fall asleep in my arms, but the neurology resident wanted him to do a blood test while the ward prepared a room.  We were waiting for the nurse to call us.

Before we’d left for the hospital I’d grabbed a copy of Good Night Gorilla, and his two favorite versions of Spiderman (Spiderman 2 was about to be released, so the stores were flooded with various incarnations, from retro red and electric blue to the recent oil slick black of shadow spidey.)  I wished I’d brought more things from home.  The Children’s had the typical meat and potatoes E.R. of a Canadian hospital. It was cluttered with the dreary donated toys that most kids wouldn’t miss from their rooms.

 For about fifteen minutes I kept Ben busy howling along with a rubber wolf figurine, pretending to be part of his pack. But I knew pretty soon faux howling was going to turn into real howling.  It was time for me to explain to my three-year-old son why they would be taking several vials of his blood and hooking him up to a headful of electrodes tomorrow.  So I did what parents have been doing since the dawn of time to explain the random, unknown, terrifying future. I made up some bullshit story that his childhood narcissism would be unable to resist.

 “Honey.  I didn’t want to tell you this before because I don’t want you to be disappointed if it’s not true.  But the doctors think you might have radioactive blood, like Spiderman.  You probably don’t. You’re probably just a normal kid like all the other kids.  But there is a slim possibility that you have superpowers.  And if you do, we need to find that out now to prepare you for the huge responsibility of being a superhero.”

"I’m a superhero?"  Already he seemed a little calmer.

"Maybe.  We don’t know.  I’ll be honest, probably not.  But you’re still going to have to act like a superhero and do some medical tests that are going to hurt a bit. It’s really important that we know what’s going on, because if the superpowers suddenly appear out of nowhere, you might hurt people.  You might accidentally push a friend at daycare and then your friend would go flying across the room."

Of course the possibility of such dire disaster inspired more glee than concern.  But the giggling loosened him up. "You laugh now, but if your friend is really hurt by your tremendous strength you’re not going to feel good."

"Okay mommy."

This kept him stoic enough through a five-minute blood test. Fortunately we had a nurse who played along and created a tiny band-aid for Spiderman too. 

I knew the spiderboy story was not going to be a good strategy if it actually turned out that there was something seriously wrong with Ben. But I kept focusing on what Dr. J had said.  By all outwards appearances Ben was  healthy, and that was the most important symptom.  I had brought my son here to confirm that there was actually nothing wrong with him, and that was the plan I intended to stick to.

E. (Ben’s father, who doesn’t live with us, for those of you just joining in) and I had agreed to do shifts for the next 24 hours.  He’d gone back home for a few hours, and Ben still didn’t have a room when he arrived back at the hospital.  I left them in the E.R and went home myself to get more toys, some better food, and walk my dog.

When I returned, Ben had room.  He was asleep and E. was playing hearts on his cell phone.  It was about 10 p.m. “The EEG is going to be tomorrow at 8 a.m.   They say it’s going to be six hours long.” E whispered
  “Six hours?!”
  “SHHHH!” an exasperated sigh came from behind the curtain that surrounded the bed across the aisle from us
  We went into the hallway to figure out tomorrow’s shifts, agreeing that I would stay the night and bring Ben downstairs to the EEG labs.   E. Would take over in the morning so that I could bring my dog out to my parent’s house, then I would return for the last few hours of the test.
  Ben’s room was dark, and I didn’t know the set up well enough to figure out where a bedside light was if there was one.  So I turned on the television briefly with the intention of just getting enough light to figure out where I was.   Unfortunately this set off the mother in the bed across from us who started chewing me out in fractured English.” I have two children ‘ere, I be three nights since we sleep. You must be quiet.”
  She was obviously on edge and tired and worried, so I didn’t bother to explain that I wasn’t actually planning on watching television. As I would soon find out, however, she also kind of a bitch.  As I started dozing off, Ben, who’d always been a very active sleeper, started having a bad dream and began to softly cry.
   SHHH!
   Not that it would have mattered if I’d decided to watch T.V. or Ben had decided to stay up all night to cry or even play.  About an hour later the ward was flooded with piercing, tortured screaming that would continue in spurts throughout the night.  As I would eventually learn, there was a young girl down the hall being followed for severe chronic night terrors.  She’d been here for three months.

____________________________________________________

The next morning I learned my three-year-old son was going to be required to sit quietly at a little table for the duration of the six-hour test. Spiderman was not going to be enough.  Neither was the dismal collection of VHS Disney movies the hospital had provided to pass the time.  I thanked God his father would be showing up soon.  

E. had a real way with kids.  Before I’d become pregnant we’d done a six-month road trip from Utah to Costa Rica, and in every town we entered he was like the Pied Piper.  Kids just couldn’t stay away from him.  Unfortunately, neither could women.  But that’s a whole other story that I may have to explain eventually, but not now.

   The technician was a friendly woman a few years from retirement who looked like she’d been doing this since before I was born.   She attached each electrode with a dab of conducting gel, a challenging task given that Ben had clearly inherited his dad’s impossibly thick Jew fro.
  “Sit still, honey,” I said “otherwise we wont be able to find out how radioactive you are.”  The technician shot me a quizzical look.  “Like Spiderman”, I explained.
  “M’okay”, she said, in a tone that was understanding enough, though a tad jaded. I tried to imagine what it was like doing this job day in and day out.  Of course all the kids wouldn’t be three.  But she must have heard some pretty tragic stories.
  She was about half way through Ben’s electro-do when E. arrived.  I stayed long enough to get instructions. Our job was to keep Ben sitting and busy and to keep our eye out for any seizures. Crammed near the desk was a bed Ben could go to if he needed to sleep.   The room seemed to me, unnecessarily small and cluttered with furniture and machinery.  But I understood this better when it became clear that as much as possible we needed to keep Ben’s face in view of a video camera that would be recording, along with the EEG brain waves, any evidence of seizures.  We were also given a chart and a pencil to record whatever we observed.
   
I went home, ate a decent meal and called my parents to explain the situation.  I needed to get a more complete family history for Ben.  Neither of my parents was especially close to their brothers and sisters. But I had close to twenty first cousins spread out across North America, (including Jocko whose brain tumor I wrote about earlier.) As far as I knew none of them had any neurological problems, but I figured I should ask my parents to check with my aunts and uncles anyways.

When I got back to the hospital Ben was sleeping, and E. was decidedly grumpy. “So if I understand this correctly, they have to catch him in a seizure to get any valid information” he said with just a touch of accusation.
  “I don’t know.  I guess.”
  “But he hasn’t had a seizure right!”
  “Well they seemed to think the smell hallucinations were seizures.”
  “Okay. But what if they weren’t hallucinations.  Maybe he just smelled something, or tasted something.”
  “Maybe.  But I wouldn’t have brought him here if I thought that.”
  “So what happens if there’s no seizure.”?
  “I don’t know.”
  “What’s going to stop them from keeping him here forever.”
  “Why would they do that?”
  “Because that’s what THEY do.”
    It had been a long time since I’d had to wrestle with the problem of THEM.  I wouldn’t go as far as calling E. a conspiracy theorist. His interest in these things usually bordered more on campy than paranoid. But like many people, the world just seemed to make a lot more sense to him when it was being controlled by somebody’s nefarious plan. I’d indulged him early in our relationship, enough to endure one romantic night in Nevada, under the starry, stealth bomber dotted sky of Area 51.  But I’d also spent way too many hours defending my “naiveté” about the moon landing, and learning way more than I wanted to know about the Rosicrucians.  I wasn’t in the mood for this now.  But neither was I in the mood for an argument.

   “Yeah. I’m not going to worry about that. Let’s just find out what the tests say.”
   “They’re not going to say anything. You just don’t get it do you?”
    “No I don’t.  And to be honest THEY can keep us here as long as they want, as long as it ends with THEM not finding anything. I would way rather be mourning the loss of my time than my son.”
 “Well.  I’ve got to go,” he said giving me the condescending look I’d long since learned to ignore.  And it’s a good guess there was a look on my face he was also ignoring.
  “Thanks for staying this long” I said and I meant that sincerely.  The truth was if there was a crisis E. would be there in a second. And his insights would probably be invaluable.  He just wasn’t so hot in the times of non-crisis. And I hoped very much this was one of those times.

Ben had a nice long nap, and by the time we finished watching an incredibly lame Disney version of Peter and the Wolf staring a younger Kirstey Alley as Peter’s spacey single mother, his EEG test was finished.
  We went upstairs to spend the rest of the day in our room in the neurology ward ignoring and being ignored by our sleep deprived roommates.
  I was really ready to leave this place.  It was well past the 24-hour danger period and I hadn’t seen anything I’d recognized as a seizure.  I was sure they wouldn’t keep us here another night.   

  At around 5 p.m., a team of doctors entered the room, led by another pretty Quebecois neurologist.  It was 2004 and Grey’s Anatomy wasn’t on television yet, but in my memory (perhaps because of my date with Dr. J) it was kind of like that except bilingual. Dr. D was blond and small, kind of like a cross between Izzy and Miranda.   She had such a stern look on her face when she entered the room surrounded by what appeared to be her students, my first thought was she was pissed with me.

  Maybe she was angry that we’d been admitted at all, wasting valuable bed space and EEG time.  Maybe she was about to show the residents surrounding her just how to kick neurotic, cyberchondriac mothers out of her ward and make sure they never come back.   Fine by me.  Before she’d even opened her mouth I was mentally and physically preparing to get myself out of here as soon as possible.

  “Hello Mrs. Waters.  How’s Ben? Any problems since the test.”    
  “No. Nothing” I said in a tone meant to convey how willing I was to be sent on my way.   “I think he’s ready to go home.”
“Well…” the serious look on her shifted slightly to a look I would get to know all too well.  At the time I didn’t realize how much of a neurologist’s job involved managing expectations.  But she had what I can now call her warm wet towel look. I don’t know if this was something cultivated in med school or in front of the mirror, but it seemed to me a look carefully calibrated to dampen hope, but not entirely extinguish it.
  “Ben’s EEG results were highly unusual for a child his age.”
  “ Unusual?”
 “Normally the results we saw would indicate something very deep in the brain.  But as I said it’s very rare to see results like this in children so young.“
  “Deep in the brain?”  The words seemed to move across my tongue like wooly ice cubes. I’d brought him in here because I suspected there was something wrong, for some reason I hadn’t actually prepared myself for there actually being something wrong. And “deep in the brain” sounded really wrong. I went immediately into denial. “You know, I forgot to write this down.  But at one point he scratched his head and moved one of the electrodes.  Do you think it could be that? ”
   She gave me a tiny smile that was pretty much like giving the warm wet towel a little squeeze.  “No that’s not what it is. We need to do some more extensive tests.  I’d like to do a 24-hour EEG and we’ll probably follow that up with an MRI.  I don’t know when we can get an MRI appointment.  We’ll try for as soon as possible.  But right now I can’t tell you how long you’re going to be here. I will say, though, my gut feeling is it’s epilepsy.”
   I was numb.  My mind wasn’t even ready yet to register the word epilepsy.   “24 hours??  He can’t sit in that room for 24 hours.”
    “Don’t worry. The surroundings are more comfortable for the longer tests. They do it up here in the ward.”
    Leaving me with that not very reassuring reassurance, she and her team continued on their rounds.  There was not much else now for me to do but call E.

To be continued, but first a digression