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During the winter of Edward's first-grade year, I would often dream that he was dead. These were long,complicated nightmares from which I would awaken gasping,wild with grief, my heart pounding into total darkness.
It was early January,a night so cold I had piled four blankets on the bed before getting in just hours before. I opened my eyes and lay still for a long time,letting my dream fade and listening to the ticking of snow crystals against the windowpane.Gradually,the rapid drumbeat in my chest died down. My eyes focused and shapes emerged: fuzzy gray outlines against black air.For weeks I had awakened every morning around three-thirty, but I had never once succeeded in falling back to sleep.
Jack turned and sighed, a gust of warm air against my neck. My husband could sleep through anything, including my thrashing and the stiff terror that followed.Edward could sleep through nothing,not even perfect silence.Now,I could feel him in the next room, alert and anxious, twitchy, concentrating hard on trying not to move. I imagined his thoughts streaming through the wall between us, spangling like stars.
A ghost of vapor hung over the radiator and the window above us was covered with rime. For a moment I burrowed backward into Jack, who radiated heat like a furnace. Still sleeping, he slipped his arms around me and I stayed inside them,contented,for a few minutes. But when my back began to perspire against his bare chest, I knew it was time to get up.
My body was so large at this point,my stomach so distended,I had to set myselfup in order to vault out of bed. I twisted to the side ofthe mattress and flattened a palm squarely against Jack's top shoulder, then shoved hard against his immovable bulk and made it over the edge on the first try. I stood,panting,and reached out to the wall to steady myself.
The wooden floor was hard and cold and my feet immediately started to ache.I needed socks,which presented a problem.Finding the socks wasn't difficult.We'd given the larger bedroom,the "master,"to the boys, and set up a nursery in the smaller bedroom across the hall. Jack and I slept in an alcove meant for storage,or a tiny office.It was L-shaped,roughly the size of a Ping-Pong table with a little air pocket attached to the top.I could stretch out one arm and retrieve a pair of socks from the dresser. But putting them on was a different story.
During the day, Jack helped dress me: I would stand in line along with the boys as he moved from one of us to the next, folding white socks neatly over our ankles and tying bows on our shoes. Rather than wake him now,which he had told me to do,I decided to apply the socks myself. I took a deep breath and held it, bending over and reaching for one foot,terrified that I was squeezing the baby to death. After slipping the first one on,I rested for a few seconds before repeating the maneuver on the other side.
I knew I should let Edward alone but it was as if there were an invisible cord strung between us,pulling me toward him.I shuffled softly down the carpeted hall and pushed open the door. Jack had hung special room-darkening shades in the boys'room so the blackness was even thicker than in ours.Stepping inside was like moving through cloth and it took a full minute for me to see the outline of Matt sleeping under his covers, his breath sounds smoothly puttering, his humped-up body a miniature version of his father's.
Edward didn't raise his head from the pillow but the air was full of him, tight and crackling with his energy. Every night he waged the same battle with sleep: mind racing,eyes blinking.For twelve straight nights now he'd lost.
"Sweetheart, try to relax."I knew this was pointless but found myself saying it every time I stared down at him.What I wanted was to walk over and smooth back his hair,or lie down on the bed and pull him in, cradling him as I did when he was a baby,when he would relax against me and let his eyelids sag until he fell asleep. But now his pale eyes were wrinkled and wary and I was afraid if I touched him he'd flinch and retract, like those tiny worms that coil into tight springs when you poke them with your finger.
"Close your eyes and think about Lake Superior." I tried to make my voice rhythmic, hypnotic." Think about the way the waves keep moving against the rocks. Pretend you're walking on the water." My voice trailed off as I left, closing the door behind me, wondering how many nights a child can go without sleep before he dies. The hallway seemed to swell and contract like a bellows and my throat filled with a metallic taste. I closed my own gritty eyes, leaned against the wall,and swallowed several times in order not to be sick.
Downstairs, I flipped on an overhead light, filled the teakettle,and lit a burner underneath. The kitchen was a bright place,far less ominous than the cold bedrooms upstairs. Gas hissed out and the stove flame burned red, then a clean, hot orange tipped with yellow and blue. I opened the cupboard where Jack had hidden a bag ofespresso beans in a tin canister behind the blender we never used. He drank coffee only when he had to, when he was changing shifts and needed to stay awake all night. And he tried to do it when I wasn't around, so I wouldn't have to suffer. But I was not so kind to myself.
Every morning before he got up I took the canister down, opened it, and breathed in its scent. I craved coffee in a desperate, passionate way, like heroin or cocaine. I fantasized about how my hand would curve around the warm cup, how the steam would dampen my face. I wondered ifthis was the sort ofdesire that made junkies sell their children for a fix. Jack insisted real drug withdrawal was much worse; secretly, I doubted it. Sometimes I imagined I was having full-scale hallucinations: bugs crawling on my eyelids or purple snakes slithering across the floor. But I never drank any.I knew the consequences of doing the wrong things during pregnancy,even if I wasn't sure exactly what all those wrong things were. I was determined never to do them again.
The window over the kitchen sink was black. With the light on inside,the houses behind ours weren't visible. Nor was the clothesline in our yard,where a red towel that had hung through three blizzards was now completely frozen with one stiff corner pointing down toward the ground. The world was noiseless at four o'clock in the middle of winter and my movements putting the kettle on the stove,setting a cup down on the countertop,shutting the cupboard door after getting a tea bag seemed to pop rudely in midair.
This was the eighth month of my third, and easiest, pregnancy. Even so,every change had taken me by surprise. I'd forgotten all about the inhuman bulkiness of this stage, the shortness of breath, the leg cramps. And the certainty that the downward pressure inside my body had grown so intense, the baby must be about to drop right out onto the floor. I had imagined this far too often: the infant in my mind falling headfirst and bouncing several times, its skull breaking open like an eggshell before the small body skittered to a stop.
Just yesterday,the doctor had assured me it was pinched nerve endings and not fetal distress that was causing the currents of pain to run down my legs. Of course,he was a neurologist, not an obstetrician,and I had met him only that afternoon. But I liked Barry Newberg more than my own OB; he seemed smarter and his conclusions made sense to me. The fact that I believed in him was one of the things keeping me up tonight. The previous afternoon Newberg had also offered a possible diagnosis for Edward, one worse than anything I'd ever heard before or been able to dream up on my own.
I sat at the kitchen table,using one hand to balance a mug of tea on the shelf of my stomach. The tabletop was clear but for a cellophane-wrapped library book and a thick sheaf of cream-colored pages held together with a large industrial staple.For a moment,my hand hovered above the book but I pulled it away and lurched up out of my chair to look for a pen instead. I found one in the desk we'd tucked into a corner of the living room: blue with a fine, wet tip,the sort I used to edit galleys at the newspaper. I took this and an afghan,which I wrapped awkwardly around myself, and returned to the table.
The questionnaire began, as these things usually do, with easy questions. Name, address, parents' names and marital status. Born: March 12, 1988. Age: 6.Grade in school:1st. Siblings: one, Matthew, 4 years old. Then I turned the page. Developmental Milestones, it said. When did he first smile? That was easy. I remembered the day, how amazed we were,Jack and I,that this three-week-old baby could look so wise and amused by two ridiculously young, awkward parents. But then the questions got harder. When did he roll over? Sit? Stand assisted? Stand unassisted? Eat with a fork?
A better mother would have all these things recorded in a baby book along with locks of hair and inky footprints. I had only flashes of memory: Edward sitting on the living room floor surrounded by pillows in case he toppled over, while Jack's friend Paul sat behind him on the couch and played a guitar. Jack extending one long finger for Edward to use for balance as they waded through a creek near our apartment. Was Edward eleven months old? Thirteen?
When Edward was an infant,I had showed his pediatrician the dark spots on his back and side during a well-baby checkup. After he withdrew, years later,I'd returned to ask if there could be any connection. "Mothers," she'd said, shaking her head, as if I were so silly to be worried about a little boy who'd suddenly stopped singing and begun chewing his clothes. That was back when she insisted mutism was just a phase he would grow out of. About six months later, she changed camps completely and decided he'd probably suffered some sort of brain damage. How,she wouldn't say.
Recently,we had been referred to Barry Newberg. Very expensive, well educated,and new in town, he'd already discovered that one supposedly autistic child actually was suffering from a yeast allergy and cured the boy overnight with a drug called nystatin. That story had spread like a forest fire among desperate parents like us.
The day before,we had sat in his examining room, Edward and I. And this man who couldn't have been much more than thirty read through every page of the medical records I'd brought while pulling compulsively on the dark curls over his forehead.I tried to match his stillness and be perfectly quiet, but the baby was jabbing around inside me and Edward had climbed from table to bookshelf. I tried to coax him down with a lollipop from a bowl on the doctor's long oak desk. But Edward wouldn't even look at me."He's fine,"Newberg said, waving without lifting his eyes from the pages.So I stopped.
Then he started the examination. Heart,blood pressure. He paused for a minute after measuring Edward's head and I held my breath. Newberg wrapped the measuring tape around again. Edward, sucking on the lollipop, bobbed rhythmically like a toy on a spring so Newberg had to move with him. When the doctor glanced back at me, I thought he was about to say something so I waited,my throat tightening with fear. Instead, he walked over and slipped the tape around my head. Then he laughed. "Ah, good. It's not an abnormality. Apparently, big heads just run in the family."
The mood shifted, becoming almost jolly,and I had the feeling we'd escaped. Newberg pulled off Edward's T-shirt and began examining his body,which was muscular and strong.Nothing to worry about there. In my head, I began planning dinner: grilled cheese sandwiches and tomato soup, brownies to reward Edward for behaving. But then I looked up and saw Newberg studying Edward's back, just standing over it, looking down, and everything went still. Even the baby stopped moving.
"Would you come here?"he asked, his back still to me as he leaned over Edward, who had had enough and was fishtailing, trying to squirm away. "How long has he had those?"Newberg pointed to those cocoa-colored Rorschach splatters I'd brought to the attention ofthe pediatrician six years before.
"Since he was born,"I said, trying to remember if this was true."But they got bigger as he grew. They've been like this since around eighteen months."
Barry Newberg kept moving his index finger across the largest one, as if he were hoping it would rub off.Edward had stopped wriggling and was laughing silently as he always did when he was tickled.
The doctor had me put one hand on Edward's back so he wouldn't fall off the table and went into a closet to get something that looked like the Lite-Brite I'd had as a little girl a box with a slanted, black screen in front. He flipped off the fluorescent lights as he walked back. Now we were both standing over Edward in the dark and Newberg turned on the box and shone it down. Its beam was purple and smoky except where it hit Edward's skin and there it was blue on the white parts, greenish on the parts that had been brown. My son's back looked like a map now: mostly ocean with a few small floating landforms.
Later, while Edward played in the waiting room under the receptionist's watch, the doctor took me into his office, where he put on a white coat, sat behind his desk, and told me the name of a disease that could explain everything that had happened to Edward. He said the words calcification and brain lesions and deformity. He didn't show me any pictures but instead gave me the questionnaire and instructions to take Edward down the hall for a series of blood tests.
"Try not to kill yourself worrying," he said quietly as he handed the forms across his desk. "I'm just being very cautious."
Diagnosis required a minimum of three irregular spots,he explained, each one at least an inch across and that's exactly what Edward had. The bare minimum. Plus the loss of speech, insomnia, hyperactivity, the way his hand kept flying up in front ofhis eyes, and the eerie outbursts of uncontrollable laughter all those could come from snarls of tumor that were sitting like roadblocks on the pathways of Edward's brain. Newberg rattled off the list ofsymptoms like ingredients for a recipe and all the time I just stared out his window at a patch of bright, sunlit afternoon.
After the appointment, I went to the library and found the only book they had that described the eight-syllable disease whose name I'd written carefully on the back of an old bank receipt from my purse. I checked the book out, but I didn't look at it then. Instead,I brought it home and set it on the table with the questionnaire inside. Now,alone in my bright kitchen,I reached for the book and let it fall open in my hands. What I saw made the air leave my body, only I didn't realize it until I found myself struggling to breathe.
The child in the picture was no more than five, a girl, I thought, though it was hard to tell. Her hair was sparse and wispy and there was a cabbagy bump emerging from the right side ofher head, making it look as ifshe had grown a second, external brain. As if to balance this, her left ear had a series of tuberous growths that dangled like jewelry and her cheeks and neck were covered with a variety ofpustules, some like large pimples, others inflated to the size of golfballs.
I imagined stroking the head of this little girl. Would the bumps feel squishy or firm? My hand crawled and before I realized what I was doing, I pulled it back from the page as if this would prevent my ever coming in contact with such a child. And all the things I had dreaded Edward's ongoing silence; the pained and bewildered look in his eyes; the prospect of watching him grow into a teenager who rocked and stared into the palm of one hand while other boys his age were beginning to date and drive and shave all of this receded as I saw his face and body erupting in a rapid time-lapse manner. Mottled outcroppings bursting out all over his smooth, perfect skin. The problems would still be there, underneath. But in addition there would be this horror: a permanent armor of fleshy, reptilian blight making him that much harder to hold.
At least,the way things were, people tended to forgive Edward his oddness and comment instead on his beauty. There seemed to be a place in their understanding for children who were mute but angelic-looking. What would happen to him if that, too, were lost?
The sky had lightened to a slightly grayer shade; when I raised my eyes to the window, I could see the corner of that long-forgotten towel sway in a sweep of wind. I closed the book and went through the medical section of the form, checking boxes quickly: no for a family history of cancer and heart disease, yes for alcoholism and diabetes. I made a note in the margin that Jack had been adopted and we had no information about his blood relatives. Then I began working on the more difficult questions: Did my mother have age spots? Did anyone in our family have soft tumors? A medical condition that involved calcium deposits? Unexplained thickening of the spine?
This disease was not, Newberg had explained to me, one for which there was a definitive test. Instead, it was more like a verdict a doctor might reach after reviewing all the evidence. That afternoon, I was due to return to Newberg's office, to see him alone and present him with all the facts before deliberations began.
Inside me the baby shifted, kneeing the lining of my body, rotating and settling against my right lung. I raised my arms over my head and stretched back for air. Upstairs, the floor creaked in stages as Jack moved, first to the side of the bed, then the hallway, and into the bathroom. Because I was listening for it, I heard the muffled thunk of the toilet lid as he flipped it up against the porcelain tank, the stream of his urine as it hit the water. I felt Edward turn over in his bed and squeeze his eyes shut, pretending to sleep even though the rest of the house was waking up.
I turned to the final page and faced the hardest question: When did you first notice your child's symptoms? There was only an inch of space in which to write my answer. One day when he was nearly four, when he went from a bright-eyed,laughing boy who talked in a high voice and asked Why nonstop to a silent zombie who looked as if his inner fire had gone out, turning him gray and cold and dead inside.
Three years, ten months, I wrote. After the next line, List symptoms in order of appearance, I dashed the words withdrawal, insomnia, rocking. I stared at my pen for a moment, then wrote another one: desolation. But before I rose, I shook my head and crossed it out with one broad stroke of ink.
Turning off the lights that were no longer necessary, I walked slowly up the stairs and down the hall. I pushed open the door to the boys' room. Matt was moving fitfully under his blankets, but Edward was sitting up in bed staring straight ahead with unblinking eyes. I went to him and put my arm around his shoulder but he felt loose and deboned, as if the person who used to occupy his body was already gone.
© & copy 2005 by Ann Bauer