Partial Deletion

Publish Date: April 1, 2013

Benjy never lasted at any of the group homes. Dad pulled him out of the first one, the only residential facility in Georgia for the profoundly challenged, when he was twelve. He’d been there about two months, and seemed happy enough when he came home for Christmas break, but bath-time revealed a series of bruises, evenly spaced, like rungs up the ladder of his spine. When Mom tried to get a closer look through the soft, forgiving water, Benjy screeched and slapped her in the face.

The next morning at the pediatrician’s office, Dr. Cooper lifted Benjy’s shirttail with a blunt, yellow pencil and quickly scanned his back. 

“Well, someone’s been pinching the poor kid,” he said, dropping the flap, and turning to Mom. “I’m mandated to report this, of course, Caroline.” 

It was a line Dr. Cooper would repeat many times over the next several years, with each iteration sounding a little less sympathetic to the poor kid -- all his bruises, burns and breaks -- and a little more annoyed by the required paperwork. 

After the initial Department of Family and Children’s Services’ inquiry and a finding of “unsubstantiated,” Dad convinced Mom, and even a few admission directors, that Benjy would fit in better at one of Georgia’s less restrictive Retarded Citizens Residential Centers, where mildly to moderately-impaired residents shared dorm rooms under the supervision of a hall counselor, and wandered the grounds freely by day when they weren’t in a beading class or job training. But Benjy's full scale IQ of 21, as well as a state-of-the art chromosomal smear, should have suggested that such freedoms were not wisely allocated to someone with his limitations. And despite Dad’s heroic negotiations, bribes and outright begging, three of the RC2s sent Benjy home in record time, usually with some snappy comment for his file: Temperament incompatible with community living. A danger to other residents. Hopelessly maladjusted.  

They had a point, or rather, a partial point: Partial Monosomy 21. The short arm of one of Benjy’s twenty-first chromosomes was fragmented (a partial deletion, the specialists said) and in my little brother’s case, less meant more: less genetic material, much more disability. He would never become a grocery-bagger at the local Kroger’s, or a ticket-taker at the Plaza Theatre. Those jobs belonged to Down syndrome kids, the poster children for mental retardation, with their spendthrift’s extra twenty-first chromosome and their much-touted love of company. I hated how much the Down kids thrived in so many of the residential centers that tossed Benjy out -- sharing their tater tots in the dining hall, job-training at McDonalds, even landing small roles in short-lived but well-reviewed sitcoms. Like that cute, chubby redhead, Corky, on ABC -- Life Goes On

The medical literature I read for a research paper in high school, when I was trying to leverage my brother’s disability into extra credit, called Benjy’s syndrome “reverse Down,” because he had a partially-deleted twenty-first chromosome, instead of an extra one. In fact, many Down syndrome features – floppy body, congenial temperament -- were reversed in Benjy: Tight, wiry and restless, he stopped only when sleep or one of his frequent seizures took his brain. And while no one who really knew Benjy would ever call him anti-social – no definitely not that, for he loved attention and his family, and most especially, our middle brother Hugo -- his socialization was, well, uniquely . . . Benjy. He wouldn’t or couldn’t sit still for a group lesson on silverware polishing, a lunch of sloppy Joes, or the center-du-jour’s Bingo game. He kicked and caterwauled through group activities, refused to eat or sleep on anyone’s schedule, then smiled at other residents as he pushed them into ponds. I forgot the names of all the places Benjy went, but always remembered the specific incidents that got him expelled, because they usually involved water, and because Hugo, whose antidote to family stress was anecdote, memorialized them through a series of catchy titles: "The Flushable Phone," "Laundered Light Bulbs," and my personal favorite, "Resusci-Dummy.” 

The summer before my senior year in high school – prior to the fall flurry of college applications -- I was all about extra, extra credit. My plans definitely did not include Babysitting Baby Brother Benjy: I had definitely done that B4. No, I would be escaping to nearby Emory, for a six-week, college-level biology course – an “enrichment” that, I tried to convince my parents, was essential for beefing up my high school transcript and getting into an Ivy League University. 

“I really need this,” I said, “to enhance my applications.” The first part was true, and perhaps the second, too. 

“Well, Big Sis should definitely go get enriched," said Hugo, "I can help with Benjy.” 

“What about diving?” Mom asked. “That summer training program you wanted to do?” “I don’t need a bunch of hot-dog divers, challenging me with their degrees of difficulty,” he said. “Just me and Benjy, out back on the board. We’ll be fine, won’t we buddy.” 

Benjy moaned happily, as if he understood. 

“That’s very kind,” Mom said and looked at me, “Jules?” 

I reached into my cold soul and pulled out a tinny, “Thanks,” then smiled through the familiar taste of resentment. Orange peel coating my lips. “Really, Hugo. You don’t need to give up anything for me.” 

“Not a problem. Go or don’t go,” He shrugged. “I’ll be here either way. Suit yourself.” The implication being, of course, that I always did. Well, screw him. And the rest of my family, too. Summer school was calling my name.

"I don't know what I'd do without Hugo," Mom told me a few weeks later, on my first visit home. I had only come to do a load of wash and to take a quick swim in the back yard pool. It was end of June – and already that dense southern heat had made us all slaves to air conditioning and water. Mom sat at the kitchen counter, looking miserable. The boys were fooling around out back in the pool. "He doesn't have any friends, you know. Just diving and Benjamin. All day long. Not like you." 

Not like you. I watched Mom closely, but couldn’t tell if this was something I should be happy about. Not like you. Diving and Benjamin: A solitary sport and a single, untiring spectator. It was all Hugo seemed to want: The discipline of diving, the distraction of Benjy – or was it the other way around? The Recluse and the Retard , I dubbed them privately. Then added to my internal list of abuses: The Diver and the Dummy. Diver: I knew the word would convey the sublimated frustrations of the quiet, middle child. I wanted Hugo thought of that way: Repressed, controlled, and yes, a little strange, because surely I was normalized by the comparison. 

"What would I do without Hugo?" Mom repeated. She stood up slowly and shook herself back into functioning; she poured a couple of tall glasses of lemonade, then added a sprig of fresh mint from the garden. “Would you walk these out to the boys while I start dinner?” She handed me the drinks. "Stay and eat with us tonight?” She asked. "We never see you anymore." 

Waist-deep in the shallow end of the pool, Benjy ignored me and my offerings. His sloe-eye angled off across the water to fix on the diving board at the other end. Hugo paced his approach: A light one-two, then the hurdle, depressing the spring-board until the recoil tossed him high into the perfect take-off. Launched over the water, Hugo pulled into a spinning ball, spinning and falling, all his youth and elegance and future contained for one tight instant in the tuck. He snapped open arrow-straight, slicing the pool's surface.

Benjy bounced in place in the shallow-end, his slow brain assessing: Where can Hugo be? As he waited for the bursting through, just barely holding his low moan in check, Benjy slapped the surface of the water. Where can Hugo be? Where can Hugo be? The moan rose from a deep, guttural rumble into the kind of high-pitched squealing that made me think for an instant that I could slap Benjy silent. No. I was only home for a few hours. A cooling swim and a calm family dinner -- before heading back to campus. Hugo had moved undetected, across the bottom of the pool, and now circled Benjy, waiting for him to catch on. Through the water's distortion, Benjy's usually twisted leg looked normal. He pounded the surface, frustrated and thrilled with the possibility of where Hugo might be. Just when Benjy was reaching fever pitch, just as I thought Hugo's lungs must be ready to explode, he burst through the water's scrim, reverse-diving to air, and bear-hugged Benjy from behind. "Gotcha, Man," he said. "You’re mine. All mine." 

Mom called me at summer school the next week with a news flash. "There's a place in Philadelphia Dad’s been investigating. Actually, it sounds hopeful. He’s up there already, scouting it out." 

On the communal phone in Dobbs Hall, even with the background noise of the other summer students goofing around, I could hear her inhale, then her little inquiring cough. 

Just come right out and ask me, I willed her. 

"We've just run out of options here, Jules. Dad really wants me to come see this place with him – he wants some . . . some help. With all the decisions." She held the line, waiting for my offer, knowing it would come, just as I knew that after a few of my obligatory sighs, and another prolonged moment of silence, I would finally give it. 

"Should I come home?"

She exhaled softly, "I'd be much happier if there were a licensed driver in the house. And if Hugo had some back up. Would you mind, darling?" 

Ah, the term of endearment. My reward, I thought, wishing it didn't affect me. Of course I didn’t mind, I told her. 

I skipped my Friday afternoon fruit-fly lab to get home before my parents left for the weekend. Mom looked grey and ashy under her eyes; her hair was a tangled mess. 

"Would you believe it?” she said, “Benjamin’s had four seizures since we spoke when was that . . . on Monday? The Fireworks Fiesta, Hugo’s calling in.” 

“Clever boy.” 

The ceiling shook. Then shrieks from upstairs. Mom looked up through her smoke at a vibrating light fixture. "The Bed Game," she explained, as if I didn't know, as if I had been away for months, not four weeks, and could possibly have forgotten this. All of this: How Hugo had a way of driving Benjy into a fabulous hysteria with a series of rollicking games: Sideways Crabs. Gulliver Treatment. Barney Gone Bad. The theory was that he would tire Benjy out before bed, make him sleep better. The problem was now Benjy expected this treatment from everyone, every night, on demand, waving his arms in his macro sign language, his gestures growing larger and his shrieks wilder, until he got his way. Sometimes I didn’t know which brother made me crazier: The Retard and Recluse were really one and the same. I hated them almost as much as I hated my own awful thoughts. Retard and the Recluse. Who could say such a thing? Someone who was . . . Reprehensible? Was there a noun form of that word? Reprehension didn’t work. An “R” word for awful person? All I could come up with was Reprobate. A person without moral scruples. A good SAT word, and come to think of it, a damn good antonym for Hugo, the good soul.

All day Saturday, R&R stayed in the pool, cracking each other up with their pratfalls. I watched them, first from the bay window in the kitchen, then later in the day, from my seat by the pool. One bouncing, one diving; one drooling, one splashing. So happy in their watery world. Wallowing in the shallow water, Benjy’s fleshy nose, heavy lips and the remnants of his last institutional crew-cut – now tinged blond from all his pool-time -- made him a gross caricature of Hugo's good looks. The sun could do that just as the forgiving water blurred Benjy's palsied left leg and recalcitrant body, until he looked like a sinewy, shaved Hugo. Could Benjy know this? Is that why he sought it out? This softening and merging? 

"You okay, Benjy?" I yelled across the water. He didn’t turn around. 

"He's on his pump," Hugo said. "Check it out." Benjy held onto the pool ledge with a vice-like grip, his body pressed against the outlet where the fresh water poured in. His body shook. 

"Oh God,” I said, dashing around the shallow end. “Seizure?" 

"Relax," Hugo said, “It’s not that.” 

I reached the steps and squatted down, grabbed Benjy by the arm and started to pull him out of the water. With one hand, he let go of the ledge and slapped my hand. His face was contorted, his eyes squeezed shut and he groaned loudly. 

“What’s wrong?” I yelled at Hugo. “What’s he doing?” 

"The Joy of Sex," Hugo announced. "Dad put those jets in to help with his muscle development.” 

"Jesus." I pulled my hand quickly out of the water that was now flooded, I imagined, with a fresh shipment of Benjy's screwed-up sperm. 

"The Great Whack-off Caper," Hugo said, vulgarly squirting a handful of water at me.

That evening, Benjy and I watched the Raffi video three times through -- Rafish Raffi in concert -- while Hugo biked to SportStop to look for a new Speedo. How urgent was that? After the third time through the video, we listened to Raffi tunes on the stereo. As Benjy cranked the bass, the whole room vibrated. Songs about the earth. Songs about pollution. Benjy rocking in place, stamping his foot to his all time favorite: BAY-bee Beluga, Oh, BAY-bee Beluga. Is the water warm? Is your mama home with you, so happy? Then he grabbed his crayon box, and threw it across the living room, laughing loudly and bouncing, as the sixty-eight wonderful colors roll over the hardwood floor. 

"You're going to pick those up," I said turning off the music, and knowing before the words come out that I was entering a futile battle. No one had ever convinced Benjy of the merits cleaning up. And as I spat out the lyrics to that insipid song, Clean Up, Clean Up, Everybody do your share, he stuck the indigo crayon in his mouth and watched me gather the others -- reds first, then yellows, deepening into greens, and aqua, calm, forgiving water. Just as I was putting the top on the crayon the box, Benjy lunged at me and knocked the whole bunch on the floor again. He laughed like a rabid hyena, crayon-specked drool spilling off his chin. 

"You little jerk," I said, pulling the indigo out of his mouth. I snapped it in two, and held the pieces above his head. 

He slapped my stomach, then my arm, slapped it again, trying to get at his crayon. 

"Go on then," I said, throwing the pieces across the room. "Go. Eat them. See if I care.” 

But then he just pulled his two arms together across his chest in a hug, his sign for Hugo. He sat on the floor, rocking and moaning and hugging himself. Hugo. Hugo. 

“Hugo’s out,” I said, “And it’s time for you to go to bed right now.” I half-dragged, half-carried him up the stairs.

In his room, Benjy fought hard as I tried to force him into one of his adult-sized diapers. Depends, Reliability or Secure: None of them held a night's worth of urine, as far as I could tell. Mom had devised a trick after Benjy reached puberty. She used a newborn sized diaper cupped around his penis; then she put the adult diaper on the regular way, securing it with duct tape. But after the crayon crisis, he certainly wasn't going to let me diaper him. Fine, I thought, forget the extra protection. Finally, I wedged him into the large diaper, accidentally catching some leg hairs in the tape. I ripped them off with a swift tug, taking the smile off his face, too. When he tried to hit me, again, though, something came over me and I started to cry. I just sat on the mattress on his floor and blubbered. And then, strangely, he sat stock-still on the floor beside me, scanning my face with his good eye, then reached out and patted my knee. I used the temporary calm to make a quick exit, and locked him in his room for the night. “Sleep tight,” I whispered, through the key-hole. 

I ate three pieces of cold Kentucky Fried Chicken, straight from the bottom of a barrel I found at the back of the fridge, as I watched some lousy Saturday night TV. Just me and Julie, the Cruise Director, alone for sixty minutes on the Love Boat: Broken hearts, lonely hearts, desolate hearts; not a problem on the ship we couldn’t solve in sixty minutes. Benjy was quiet for a short while. Then, after the first commercial break, I heard him stomping around in his room. No problem, I thought, nothing I can’t handle, and I turned up the volume, pretended I couldn’t feel the vibrations, or see the chandelier shaking overhead. By the next commercial break, when I went to get a bowl of ice cream, the noises from upstairs had mutated into what sounded like full body slams against the bedroom door. “I cannot hear you,” I said out loud, and cranked the volume even higher. My vanilla fudge twirl ice-cream as sticky and pleasing as the impending Love Boat resolutions. 

Hugo returned a little after ten pm, sweating and red-faced from his late night bike ride. “Why’s the TV so loud.”

“Have a seat,” I replied, convivially, moving over on the couch. “Tattoo is up next. A Fantasy Island rerun.” 

“I could hear the TV from half way down the driveway. Where’s Benjy?” 

“Upstairs. Went out like a light.” 

A crash overhead made me a liar. Hugo looked at me accusingly then, ever the Boy Scout, rushed upstairs. A few seconds later, he yelled, “Get a Valium, Jules, quick, he’s seizing.” I ran into the kitchen and found the medicine, under the butter-flap in the fridge, then three-stepped the stairs to find Hugo hauling Benjy my parents’ room. He laid Benjy down on their bed. 

“Help me turn him, first. Quick, grab his legs.” 

A different kind of bed game now. We struggled to roll Benjy’s rigid, thrashing body over; then, Hugo firmly placed his knee on the small of Benjy’s back. Hugo was all authority now. 

"Pull off the diaper. Open his legs. Hold that leg still – there -- wider. Now get out of the way." He inserted the tube into Benjy's rectum, squeezed it empty. In an afterthought of modesty, he draped a blanket over Benjy. 

Now we waited; waited for the Valium. How long? One Mississippi, two . . . Benjy’s body jerked furiously. I covered my eyes and peeked through my first two fingers . . . Eleven Mississippi, Twelve . . .. Hugo sat on the bed, took Benjy’s head in his lap and stroked his shoulders and neck, “It’s okay, buddy, it’s gonna be okay.” 

Two minutes later – maybe it was five -- Benjy was still convulsing, but slower perhaps? His lips were Crayola cornflower-blue. His left arm jerking to an accusatory rhythm I was just beginning to decipher: Jules' fault, Jules' fault. Why had I left him alone? This was a reprobate’s punishment: To watch Benjy suffer. To play the God-awful Guessing Game. Would he come out of this one at home, or should we go to the hospital for IV drugs? How long would we wait? How long had he been seizing while I sat in front of the TV? My fault. I should leave right now, leave. Run away, back to summer school, off to college, to reform school, to a life on the street. 

Stay, Jules, stay, I told myself, It is the very least you can do. Stay, even if it is an act of will. Of love. Just an act? Sometimes, just when we were ready to give up and pack Benjy into the car, he would come out of it on his own. But this time, the seizure would not let go. I pinched his inner thigh and slapped his cheek, as I had seen Mom do. I slapped it again, harder, but still he did not respond. 

"Don’t hit him,” Hugo said calmly. “That doesn’t help.” He was still rubbing at the base of Benjy’s neck, “Get another Valium. Please." 

If only I were more like Hugo, taking this all on, making my life out of Benjy, forcing my parents to need me. Hugo -- always close by, calm, steady, ready to massage Benjy's scalp, talk him out of another seizure. "It's all right, little man, Hugo’s right here with you." Caressing, cajoling, "What do you say? You come out of this, and we'll go swim. I'll do a reverse one and a half. You want to push me in?" 

"Hospital?" I said louder, as Benjy still jerked on arhythmically. 

"No. You know how the hospital treats him. They haven’t got a clue. Just please, go get another Valium." 

I ran downstairs, opened the fridge and plucked a second vial from behind the flap. By the time I willed myself back upstairs, Hugo had dragged Benjy into the bathroom and closed the door behind them. 

"What are you doing?" There was no authority left in me. “Open the door, Hugo.” But we both knew I didn’t really want him to include me. I retreated to my parents' bed and lay down. Hugo could handle this better anyway. In the background, the bath water ran. A bath could relax the muscles – water, soft, forgiving water -- maybe it would bring Benjy out of the seizing. I sank heavily onto the mattress. So easy to let go, to give up. I only wanted out of these situations. But Hugo, Hugo was fully submerged. The water shut off. Quiet for a minute. Then back on – just a little, dripping slowly over my brothers. 

Dad the builder built a backyard pool for the boys. Added jets in the shallow end to soothe Benjy’s tight musculature, massage the palsy. Dad built a pool, added a board at the deep end and made a diver out of Hugo. What had Benjy made of all of us? I strained to hear another drop of water, rippling the bath's surface. On my parents’ night-stand, a picture of the boys standing arms around each other, waist-deep in the shallow end. My sun-softened brothers smiled up at me, out of focus, fuzzy, merging. When I raised my hand, held it like a stop sign in front of my face, it seemed so easy to delete the image. 

The same snapshot, framed on my mantel now: The boys I loved and then left behind. 

facebook icontwitter icongoodreads icon