by Janis Thomas
I regret our appointment the moment we reach the waiting area.
Mimi’s is well lit and bustling on this Saturday morning, filled with mothers whose weekdays are brimming with PTA activities and after-school sports and culinary and housekeeping duties that necessitate that they fulfill their grooming obligations on the weekends.
Lola’s daughter is here, skipping between the salon chairs and the reception area with unknowing impertinence, white daisies looped into the strands of her mousy-brown hair. The girl has Down’s Syndrome, as Katie referred to this morning. But there is a vast difference between a girl with pretty pug features and beguiling fortitude and a man-child chained to a wheelchair who cannot form intelligible sentences and whose every movement is a trial.
When Josh glides into Mimi’s, accompanied by the low hum of his motorized chair, the women avert their eyes. The children, held hostage to their mothers’ beauty demands, gape openly at him. Katie pretends to be oblivious. My son, so seduced by the power of normalcy, doesn’t notice the aversive scrutiny.
From her station, Lola marks our arrival and greets us with effervescent grace. She is Amazonian masquerading as Polish, tall and wide with a moon-shaped face, bleached-blonde hair, and a vampire brow, well plucked but dark as night.
“Ah, Kate. Welcome.” Her accent has been smoothed by her years in this country, but the way she clips the ends of her words betrays her heritage. She looks down at Josh and smiles. “And you must be Josh.”
Josh nods.
“Well, I understand why you come to see Lola. Look at that mop. When was the last time you had a proper haircut?” Josh grins but doesn’t answer. Probably he doesn’t want to offend me, since I am the one who last took a pair of sewing shears to his head. “Come over to my station and let us discuss what kind of look you want.”
Lola treats my son with such casualness, I know that Katie must have prepped her about his condition. She gestures toward a chair in the back half of the salon, and Josh slowly rolls in that direction while Katie and I follow. I force myself to keep my eyes on my son, but I feel the stares of the women in the other stations, tracking our pilgrimage to Lola’s chair as their stylists snip and blow-dry and foil their tresses. I feel their pity, heavy and thick, and it creates a green haze above my head, but I try to ignore it.
“Here we are, then,” Lola says. “You just pull yourself around to the other side of my chair. There is much room over here.”
Josh does as he’s told, steering the wheelchair into an open space between Lola’s chair and the wash sink. As he comes to a stop, he peers at his reflection in the mirrored wall. A sorrowful look crosses his face. No one else would notice because his features are perpetually twisted and strange. But I gave birth to this boy, have watched him grow, have memorized his every minute expression. My heart breaks at the inner turmoil he experiences from gazing upon himself. In another life, he is handsome. In this life, he is handicapped.
Katie and I stand behind him, side by side. She glances at me and gives me a heartening smile. This is good, she tells me with her smile. But she didn’t see the look on Josh’s face, would not have recognized it if she had.
Lola moves in front of Josh and bends at the waist so that her face is only a foot or so from his.
“Okay, so? What are we going for, Josh? You want glamorous? Like that movie star in all those pictures that has his shirt off all the time? Or you want short all over, like military man? Or maybe like Beatles cut, but me personally, I don’t like giving the bowl cut because it is so 1967.”
“Th’ Beeus se’uh ahbu wa’ elea’ ah th’ sae dae J’Ewf’Kuh wa’ sh’.”
Lola tries a smile, but it doesn’t take. She looks at me with subtle desperation.
“The Beatles’ second album was released on the same day JFK was shot,” I translate.
Lola raises her black brows, her eyes going wide. “Really? Well, that is very interesting. I did not know that.”
“Josh knows everything about everything,” Kate says proudly.
“Aye doe.” I don’t.
A staccato shriek across the room draws Lola’s attention. I follow her gaze to the reception area. Lola’s daughter has removed a flower from her hair and is batting it at another younger child while the mother waves her arms frantically.
“Hey! Devi!” Lola calls. “Co ty robisz? Tu teraz!”
The girl drops her arm then trots over to Lola. Lola smiles down at her.
“That’s my girl, dziekuje. Devi, say hello to Josh. Josh, this is my daughter, Devi.”
The girl turns her large, lazy eyes to Josh. Her tongue protrudes slightly between her teeth and lips. She does a half curtsy.
“Plee’ to meet you,” Devi says.
Josh stares at her. “Plee’ t’ mee y’.”
“Why aw you in a wheewchair?” she asks, an innocent question from a cherub, asked without prejudice or judgment.
“Aye af sirbil pauzie.” I have cerebral palsy. Another fracture to my heart.
Devi nods, then surprises me by translating his words. “Oh. Cerebraw pawsy. I have Downs.”
Josh tries to nod. “Dow sydruh uhke we a’ idividuah ha a xtruh cahee a kroahzoe twahee-wah.” Down syndrome occurs when an individual has an extra copy of chromosome twenty-one.
Devi shrugs. “I guess. I don’t know about chrozones.”
The girl takes a tentative step toward my son, then reaches out and hands him the daisy, the same flower she was using as a weapon only moments ago. I want to grab it for him, knowing what it will cost Josh to take it from her without my help. But I bury the impulse because I can see that he wants to do it himself. He groans slightly as he shoves his gnarled, clawed hand in her direction. His fingers spasm, his wrist jerks, but he pushes on, frantically trying to receive the gift that is being offered to him.
Katie inhales sharply, and I turn to see her wearing an expression that mimics my own. Frustrated agony.
Finally, Josh’s fingers meet Devi’s. But just as she relinquishes the daisy’s stem, Josh’s hand spasms, and his fingers inadvertently clutch Devi’s. His grip becomes viselike. Confused and afraid, Devi starts to scream. And scream. And scream.
And suddenly, Josh’s body twitches, his head jerks left and right, his eyes roll over and over. His shoulders tighten, his right arm flails, and his breathing hitches in his throat. Gulp, wheeze, hitch, until no air is passing through his trachea and into his lungs. Josh is choking.
Lola grabs Devi and covers her mouth with a manicured hand to silence the girl’s screams, but Josh continues to writhe.
“Mom!” Kate’s face is white, her eyes saucers.
I am calm. “Kate,” I say quietly, below the muffled screams of Devi and the roar of murmuring soccer moms. “Call nine-one-one. Now.”
I move around the wheelchair to face my son. I place my hands on his and bend toward him so that our faces are inches apart. His eyes are wild, roving, scanning, searching for ground zero, something to focus on, but they can’t because, for him, the room is spinning like a tornado.
“Josh. It’s Mom. Josh, breathe.”
He gasps for air. His cheeks are turning purple, his lips a frightening shade of powder blue.
I have successfully guided Josh through seizures before now, but this seems different. If only I could look down his throat, but that isn’t possible because his head is still snapping to and fro, his alien neck stretching, stretching as he struggles to draw in oxygen. I don’t dare attempt to peel his lips and teeth apart—the force of his jaw during a seizure is like a guillotine and could sever my digits in an instant.
“I called them,” Katie tells me, gripping her cell phone and staring at her brother helplessly.
“Good, honey, that’s good.”
By now, Lola has ushered her daughter to the back of the salon, and the ladies in the neighboring stations have vacated their seats to get away from the spectacle. But they watch, those ladies, oh, how they watch, still as statues, false sympathy painted on th
eir faces, which doesn’t conceal the smugness of self-congratulation they exude. It seeps from their pores and I can smell it, can hear each of their thoughts in stereo. My life is so much easier than hers. My children are shits, but they’re normal shits.
I’m doing all I can for Josh, but it is so little, and for a moment, I fear I’m going to lose him. I stand and throw my arms about his neck and hold his face against my chest and tell him over and over how much I love him, how he is my guy and the light of my life and my pride and joy. And these things that I say aloud are lies, because I’ve resented him and hated him for that thing that happened to him that was not his fault, that was no one’s fault, not even mine, that thing that created his disability, and I have despised all the ways I have felt like a failure because of him and that thing and his condition. But the love is true, so I repeat it, just in case. Just in case . . .
Sirens erupt in the background. They are familiar. They are the recurring soundtrack of my life.
A banana. An unblended piece of frozen banana, sucked into his mouth through the wide Smoothie Palace straw. There it was caught and cradled by his tongue and lay in wait for that moment, that instant, when a sudden inhalation drew it into the back of his throat, partially obstructing his airway. This is what the ER doctor tells me.
Colin arrives just as the medical staff stabilizes our son. He clutches my hand tightly as the doctor delivers the news that Josh will be okay.
“We’re going to keep him overnight, just to be sure,” he says, tossing his latex gloves into a nearby receptacle. I’ve been to the ER countless times over the course of Josh’s life, but this fair-haired, gleaming-toothed doctor is a stranger to me. He looks about twelve but is probably in his thirties.
“Thank you, Doctor,” Colin says, pumping the man’s naked hand enthusiastically.
“We’ll get him to a room in the next twenty minutes or so. Just have a seat in the waiting area and a nurse will let you know when that happens.”
I nod as Colin repeats his appreciation. Katie stands sentinel by the reception desk. Colin updates her, and she crumples with relief. She wants to stay, wants to be here when Josh wakes up, but I urge her to leave, to go home, or to Simone’s, or to go anywhere as long as she’s not here in this place that smells of antiseptic and death and manufactures despair and grief and only the occasional victory.
Colin offers to drive her, and although he assures me he will return shortly, I know how this will play out. We’ve performed this scene with Josh a thousand times before today, and the series of events is always the same. Colin will leave, under the pretense of returning, but then he will call to check in and ask how Josh is doing and whether it makes sense for him to come back, and I, as I always do, will tell him that it doesn’t make sense for him to come. His time is better served elsewhere, with Katie, with his fucking manuscript, with his whatever it is he does when he’s not here.
Colin is a good father and he loves Josh deeply. But he was not prepared for the curveball that life threw at him. He was never fully invested in having a child. But I wanted another baby, a sibling for my daughter, another opportunity to feel that connection with the universe, the stirring in the womb, the creation of a human being. So Colin acquiesced, and as Josh grew within me, his father’s excitement grew exponentially. A son, he’d say as he caressed my expanding belly. A mini me. A reflection of myself that I can nurture and guide and tell stories to and play catch with and buy condoms for and share firsts, like driving a stick shift and drinking a beer.
The disappointment Colin felt, and continues to feel, at Josh’s actuality is a shameful secret he thinks he keeps. But there are moments of quiet contemplation, when his guard is down, when he thinks no one is looking and his frustration and dashed expectation are written on his face and read by his wife.
He cares well for Josh. He gets him up in the morning without complaint and goes to him in the middle of the night when it’s his turn. He engages Josh in conversations about politics and history and science fiction and literature. But beneath my husband’s ministrations there is always a barely perceptible sense of distractedness and skepticism, as though he is still waiting for his real son to show up.
I don’t resent Colin for his detachment. I envy him for it.
My blessing and my curse is that mine is the one face for which my son searches when he regains consciousness. Always my face. So I will stay. I don’t consider asking Colin to stay in my stead. I will be here when Josh awakens. This is my duty. This is my life.
I sit in a standard hospital guest chair in the corner of room 408. Josh lies in the bed next to me, his chest rising and falling in perfect rhythm thanks to the breathing tube pushing air in and out of his lungs. He is asleep, but his vitals are strong. The steady beep of the heart monitor reassuringly disturbs the silence.
Josh stirs, and I lean over to see whether his movement is a sign of consciousness regained or a shift in his REM. When I’m certain it’s the latter, I lean back in my chair and gaze at his face. In the emergency room, the medical staff administered sedatives and muscle relaxants, and the combination has loosened his limbs and rendered his face into a mask of complete serenity. For a moment, I allow myself to look upon him as though he were any other teenage boy, a boy who will wake tomorrow morning with a slight sore throat from the breathing tube, a boy who will rise from the bed without assistance and dress himself and trot down to the car, ready for a Sunday afternoon of touch football at the park with his friends followed by an Xbox marathon.
I press my hands to my eyes, then swipe away my tears before they fall.
I wonder if the drugs in Josh’s system, which make him appear normal, also help him to dream his “normal” dreams. I wonder if he, too, is imagining my Sunday scenario. I hope not, for his sake.
One morning, a few years ago, I awoke to a horrific screech blaring from the monitor. I ran to Josh’s room to find him halfway out of the bed, his arms and legs flapping uselessly, his joints white with strain, his face contorted with agony. His keening wails felt like jagged shards of glass digging, scraping, stabbing through my eardrums into my brain. I rushed to him and used all my strength to push him back onto his mattress.
The bed rail that prevents such an occurrence had been detached from its upright position and hung impotently along the bottom half of the bed. I remember wondering, as I whispered calming words to my son and tucked the pillows beneath his knees and under his lower back and arms, how this had happened. When you have a child with severe cerebral palsy, there are certain things you do without thought that are as essential and automatic as breathing. The guardrail on the bed is one of those things. Had I not locked it into position? Had Colin forgotten? No and no, I thought. Not securing the guardrail would be like accidentally pouring gasoline into your child’s juice glass. You would never do it.
“Aye wa’ riee a bi’, Maah,” Josh wheezed. I was riding a bike, Mom. “Aye wa’ rayee w’ Kaee.” I was racing with Katie. “Aye bee huh, t’.” I beat her, too.
I caressed his cheek and told him to go back to sleep.
The tide of slumber pulled at him, his words soft and slow. “Aye cu d’ aeethee, Maah. Aye cu ru a’ ju’ a’ das. Aye cu ge’ uh ow a thi’ be.” I could do anything, Mom. I could run and jump and dance. I could get up out of this bed.
I glanced at the guardrail, then at the small lever that controls the mechanism. Was it possible that Josh lowered the rail himself? Was his dream so powerful, so real, was his imagining of himself as normal so trenchant that it enabled him to perform a task he could never perform in his real life?
I didn’t ask him. Perhaps I didn’t want to know the truth. Perhaps I wanted to believe that Josh did it, because if he was able to lower that guardrail with the sheer power of his mind, then what was to stop him from one day feeding himself or brushing his own hair or walking on his own two feet or riding a bike?
Tears were leaking out of the corners of his eyes and his keening had changed to low moans. His
voice was a strangled whisper. “Aye wah t’ d’ tho’ thee, Maah.” I want to do those things, Mom.
“I know, honey,” I told him, drying his cheeks with the sleeve of my nightshirt. “I do, too. I’m so sorry, Josh.”
“Aye soee, t’.” I’m sorry, too.
I didn’t tell him to have sweet dreams. I never do. Sweet dreams are anathema when every day you awaken to a nightmare.
Hours pass. The sun moves through the sky. Colin calls, as expected and we go through our usual lines. Katie calls and asks if she can bring me anything to eat or fresh clothes. I thank her for her consideration but decline, telling her that I’ll get something at the cafeteria downstairs. I never leave Josh’s room. The TV remains a blank screen. The nurses come and go, asking after me. One young Asian woman brings me stale coffee and an uneaten patient meal. I thank her and set it aside.
As the moments tick by and my son sleeps peacefully, my mind sifts through the events of the past few days. I drift into a kind of twilight trance, allowing thoughts and memories to take shape and comingle. I don’t fight them or push on them or analyze them in any way. But at some point, they twist and turn and fill my head with noise so deafening, I worry that irreversible damage might occur.
I straighten in my chair and reach for my purse. I withdraw a small notepad and a pen from the side pocket, then begin to take notes. The words come slowly at first, then faster and faster until my hand aches. When I’m finished, I read what I’ve written.
Wednesday: Charlemagne barks furiously.
Wednesday night: I wish him away.