Originally published in Black Fox Literary Magazine, Spring 2018
I brought Leo’s heart to the hospital with me, wedged in my pocket under some spare change and a tube of hand sanitizer. Now I was tracing its rough silver face and looking out the window at the planter median in front of the hospital entrance – a circle of dark green bushes ringed by a wall of tulips.
Leo was in bed, wearing a hospital gown covered with Scottie puppies and red rubber balls. He was small for a five-year-old, and the helmet of gauze keeping the EEG leads in place made his face look even tinier. He was still groggy from the sedation of his MRI earlier that morning. The MRI had already come back clear. I caught myself feeling disappointed when the nurse told us. It seems a lot easier to fix something that shows up in a photograph.
“There,” my husband Brian said from the bedside. “Did you see that?”
I walked over to the bed. “See what?”
“His eyes. He did that fluttery thing.” He waggled his fingers in front of his eyes.
We bent over him, waiting to catch him in the act.
“I think he’s just sleepy.”
“Yeah, maybe,” he said. “But we should let them know just in case.” He reached for the clicker dangling at the side of the bed. It was supposed to place a digital marker on the EEG readout anytime Leo did anything seizure-like. A few months before, a sharp-eyed speech therapist told us that Leo was having “staring spells,” and gave us the number of her daughter’s neurologist. We had never heard of staring spells, or noticed them in Leo. Sometimes it was tough to distinguish the nuances of Leo’s unresponsiveness.
I sat down in a scratchy chair and reached into my pocket for the heart again. I had come across it last night in my bedside drawer, resting on a white pillow in a tiny cardboard box – broken but too precious to throw away. I didn’t even remember putting it there. I can always just go to Michael’s and get a new chain for it, I had probably thought at the time. Knowing I never would.
The heart was once part of a necklace. I found it years before at a glitzy teen clothing store where I stopped for no reason before work one day. I had just had a miscarriage, and was distracting myself with tiny errands to keep from tugging at the knot of relief and disappointment sitting in my gut. I wasn’t even sure I wanted kids. Kids would change things, would change me. That was bad, wasn’t it? Getting pregnant and having a miscarriage only threw a pinch of superstitious doom into the mix. And so the house filled up with nonsensical purchases – bulk packages of hair scrunchies, duplicate lipsticks, bags of cherry-flavored cough drops, just in case.
I was thumbing through a display of identical tank tops in every color when something flashed at me from the jewelry rack. I looked closer to see a giant distressed silver heart on a thick chain. Silver Filigree Heart, the tag read. $8.99. I picked it up and hefted it. It was heavy and a little warm, the dark face a maze of whorls and orbs. An aggressively romantic, steampunk sort of heart.
I didn’t need a necklace. I only bought jewelry for specific occasions. The heart looked like the kind of piece that would take over my whole wardrobe and demand that my clothes match it instead of the other way around. It seemed sentimental where I was rational; expressive where I was restrained; silly where I was serious. It wasn’t me.
I held the heart for a few more seconds before I realized I was about to be late for work. When I got to the parking lot of my office I sat in the driver’s seat with the car idling, staring at the gray concrete building. I looked up and a ray of sunlight flashed off the glass facade of the car dealership across the street, blinding me.
I put the car in reverse, drove back to the clothing store and bought the heart necklace. It rode next to me on the passenger seat in a plastic bag reading THANK YOU THANK YOU THANK YOU.
A few months later, I was pregnant with Leo.
A framed picture of Brian, Leo and me hangs in our bedroom. Leo is about eight months old, a fat, serious baby with a spray of blond hair above his round face. Brian and I are smiling. I’m wearing the heart necklace in the center of a wide square neckline. It’s a terrific photo; years later, I still crop my face out of it for profile shots and contributors’ photos. “Wow, parenthood really agrees with you,” said a long-distance friend who only sees me in pictures. “You don’t just look good, you look happy.”
I wore the necklace everywhere then, with every outfit, to invariable compliments. Leo played with it when I held him, and I started thinking of it as “his” necklace. He was a quiet baby, easygoing, a little distant. He’d play with you for a while, then lose interest. “Just like his Mom,” I liked to say, poking fun at my years as an unsmiling young adult. All of that was behind me now.
The older Leo got, the more obvious it became he wasn’t like other kids his age. He hit all his milestones on time, but when we got together with friends, the differences between Leo and their kids were glaring. Their kids played for longer than a few seconds at a time. They preferred this thing to that thing, and reacted accordingly, instead of watching everything with the same placid detachment. They engaged their parents in conversations that consisted mostly of gestures and squeals, but were still recognizable as back-and-forth exchanges. Leo didn’t do any of that. Eventually, we stopped bragging about what an easy baby he was.
By the time Leo was diagnosed with autism at two years old, the heart necklace was broken. First he pulled the chain off at one end and the necklace became a pendulum that he clutched when he ran his “laps” – back and forth across any room he was in, over and over, squealing and hooting. “I wish I had your energy, kiddo!” visitors would say, not knowing what else to make of him. Then the other end of the chain got pulled off too, and then the chain disappeared, and then there was just the heart. I tossed it into the “miscellaneous” cubby on the toy shelf.
Eventually Leo wasn’t playing with toys at all, and the toy shelf got moved upstairs and out of the way. The heart went into my bedside drawer along with other bits of abandoned luxury: a crystal box of rings I never wore; a set of Chinese exercise balls in a silk case; a pair of handmade cocktail coasters that Leo had chewed at the edges. Bits of a pretty, carefree life that was not gone, I kept saying to myself, but only on hold, around the corner, just waiting to reappear when we could catch our breath.
Three hours into the 23-hour EEG, Collette, the RN in charge of Leo’s case, walked into our hospital room. She leaned over the bed to look at Leo, who watched her with listless eyes. She gave him a comical pout and straightened his pillow. “What a little trooper.”
Brian and I made polite noises of agreement. Leo’s medical adventures had already included countless evaluations by neurologists, developmental psychiatrists and behavioral therapists, as well as one open heart surgery to fix a cardiac birth defect. I don’t know if he didn’t experience alarm like other kids, or if he was just so used to constant invasions of his physical person that he didn’t bother reacting anymore. We heard little trooper a lot, along with the well-intentioned but baffling you guys are so brave.
“We’re already seeing seizure activity,” Collette said.
“You are?” I said. Brian and I stood up at the same time. “He is? Already?”
“I’m surprised too,” Collette said, crossing the room to the readout monitor. She didn’t look like the other nurses, with her red shark-bite top, impractical heels and frosted Bardot bun. She reported directly to Dr. Smith, the neurologist, and knew things the other nurses either didn’t know or weren’t authorized to tell us.
“There.” She pointed to the conveyor belt of digital lines rolling across the screen. “And there. He’s got something happening every few minutes.” Brian and I squinted at the monitor like we were trying to see the face of a saint in a piece of toast. The lines moved along jerkily, spiking every once in a while.
“That’s a seizure?” Brian said, pointing to one of the spikes.
“It’s not a full-blown clinical seizure, but it’s definitely abnormal electrical activity.” Collette straightened up and looked at Leo. “Basically, he’s losing consciousness every few minutes.”
“Every few minutes,” I echoed. No wonder he couldn’t learn anything, couldn’t concentrate, couldn’t walk across the room without getting distracted. All he could do was stagger from one blank in his world to the next.
“Is that why he’s…” I chose my words carefully. “Does this have anything to do with his autism?”
She gave an apologetic shrug. “It’s hard to say. A lot of the kids we treat for seizures also have an autism diagnosis, but there isn’t necessarily a cause and effect relationship. Does he go to school?”
We said that he did go to school and also had of a full weekly load of developmental, speech and occupational therapy. None of which is doing anything for him, I added silently.
“With the right medication,” Collette said, “you could see some changes in his ability to learn.” She got the look that nice people get on their faces when they give you bad news. “It’s not necessarily going to solve everything, but it should help.”
I wasn’t listening anymore. I had already forgotten the part where she said it wouldn’t solve everything.
We spent the rest of the afternoon circling the room, taking turns straightening Leo’s bed and the tangle of wires coming out of his helmet, restless with the guilty joy of fishing an identifiable condition out of a murky sea of symptoms. Yay, he has epilepsy!
That evening, I took a walk around the hospital grounds to stretch my legs. When I came out to the front entrance, the sun was sinking and cars were pulling around the circular drive in a steady line, picking up family members to go home. I watched them roll away, knowing we still had the whole night to go. Lights were coming on overheard, bleaching the tulips in the cluster of greenery I had watched from the window earlier.
I crossed the drive and stepped out into the island of bushes, balancing on the curb so I could turn and face the hospital. Almost all the windows were lit. I imagined people pacing in their rooms, taking turns running out for snacks and coffee, or stopping by the window to glance outside. Tomorrow we would go home and the next day Leo would go back to school. “He’s having seizures,” I said out loud, practicing what I would say to his teachers and therapists. “Little ones, but a lot of them!” Then I would nod when they said what a relief it must be to finally know something. “I know,” I said. “Things are going to change for him.”
I turned to go inside but then stopped and walked farther into the bushes. My fingers found the heart in my pocket again. I looked around to see if anyone was watching, then I knelt down, cleared a space between two bushes and buried the heart in a pile of leaves. I got up and went inside. Maybe whoever found the heart would get a new chain and wear it as a necklace again. Or maybe they would just get rid of it. It didn’t matter. I could get another one now, something different and new and whole.
This year, the tulips in front of the hospital are yellow, not red. Every time I bring Leo back for his checkups, I have to fight the urge to check the bushes for the silver filigree heart, even though I know it’s long gone.
Leo has turned into a handsome, lanky nine-year-old with dark blonde hair and bright blue eyes. People try to talk to him when we go out, and he will return a greeting with a wave, but it’s been so long since he’s said anything that I don’t remember what his voice sounds like.
Needless to say, Leo was not miraculously cured of seizures or autism when he started taking epilepsy medication. It took a few months to even find a combination of meds that didn’t make him break out in hives or turn up the volume on his seizures until they made him pass out and fall down. Eventually we hit on the right cocktail, even though our only indications of this are slight improvements in his now-annual EEG.
“This looks terrific!” the nurses always say, peering at the readouts. “Much better than last year.”
“That’s great,” I answer, flashing the same tight smile I give his army of therapists when they give me similar news. Seven years after his autism diagnosis – years full of developmental, speech, occupational, physical and biomedical therapies – Leo has grown into an affectionate, easygoing kid, showing the kind of slow progress you would expect from age, school, and the efforts of a determined family. Still, the fact remains that at nine years old, he tests out at the developmental age of three. It would be unfair to write off everything we do for him as worthless, but none of it has so far brought about the semi-mythical Great Leap Forward that every autism family I know has chased at one point or another. The same Great Leap Forward I thought had arrived when I buried Leo’s heart in the bushes years ago.
Leo negotiates the revolving doors to the medical building with interest, and does his usual double-take in the elevator when it lurches upward. He bursts into Dr. Smith’s waiting room and runs directly to the water cooler, bringing me one of the paper cups to fill for him.
After we’re shown into the inner office, Dr. Smith sweeps in, holding a folder full of paperwork. “Hey, Leo,” he says, and offers Leo a hi-five. Leo obliges and goes back to flapping the curly cord of a wall-mounted otoscope back and forth in front of his eyes. “How’s he doing?” Dr. Smith says.
I never know how to answer this question. “Fine, I guess. I mean, still the same.” I grab Leo as he tries to climb onto a rolling stool in search of a thicker and shiner cord on a high shelf.
Dr. Smith corrals Leo long enough to smack his knee with a rubber mallet and touch him with something that looks like a tuning fork. He offers Leo the shiny metal instrument to touch. Leo considers it, then goes back to his cord.
At this point, the visit is pretty much over. “How is everything else?” Dr. Smith asks, probably more out of politeness than clinical curiosity.
I fill him in on our latest batch of interventions, including the ones I leave out when I’m not in the mood for a lecture starting with there’s no research to support … Dr. Smith is more open-minded than usual when it comes to approaching autism as a whole-body disorder rather than a strictly neurological one. At the very least, he knows he doesn’t know everything.
When I finish talking, he nods. “The thing about autism,” he says, “is that there is no single type of autism.” He tells me this me at every visit, but I don’t stop him. “We don’t know if Leo has Autism #32, or Autism #87, or #139.” He puts out his arm to keep Leo from careening into a tray of instruments. “Right, Leo?” Leo nods. He recognizes his name and the conversational lift of a question.
I agree with Dr. Smith, but I’d take his conclusion even further: every kid with autism has his own autism. The symptoms may pop up in kid after kid (though in different forms, combinations and intensities) but the more closely you look at their causes and trajectories, the more they curve and split and intertwine, until you face an opaque scrollwork of patterns – inscrutable, unique, and resistant to all interventions but love.
On our way to the car we pass the planter again and Leo reaches out to run his hands through the tulips. Sometimes I wish I still had the silver filigree heart. Sure, it was broken, but it was beautiful and it was mine.