It is autumn and the leaves of October have begun to fall, but still Jennifer’s summer romance blossoms with a freshness that even the first cherry trees of April might envy. Her boyfriend David, who is trapped in his body like a mummy in its sarcophagus, calls her almost every day. The telephone rings and I jump to answer it because I am, even though moderately arthritic, swifter on my feet than she is. I hear his man’s voice gather its wind and attempt to phrase her name when I pick up. “Is Jshenny home?”
He works his tongue over the consonants as if he were scraping melted cheese from the roof of his mouth. Jennifer, at twenty-seven, is almost always home, and I fetch her while he waits.
“Jennifer! David’s on the phone!” I call as I take to the stairs, hoping my voice will penetrate her bedroom door and the music throbbing beyond it. As always, Celine Dion is crooning Jennifer’s favorite song, “My Heart Will Go On,” the love theme from Titanic, while Jennifer works the CD over the same phrase again and again, my heart will go ah, ah; and ah, ah; and ah, ah; and ah, ah; and on and on. Jennifer has been head over heels about the Titanic since the Leonardo DiCaprio/Kate Winslet movie was released, their ill-fated, but oh-so-romantic, love story igniting her desires. I detect a dip in the volume but not too much. She cranks the door’s handle hard, opens it and flaps her arms, wing-like, then step-thumps with her head held high past me and down the staircase, which takes considerable time, through the living room and into the kitchen.
She is pudgier than ever now, an enlivened dwarf on parade. Wearing enough necklaces to stock a display case, including one with a blue heart to honor the Heart of the Ocean thrown to sea in the Titanic movie, she whips them to a shoulder with a wave of her neck, picks up the receiver, smiles broadly, and places it to her ear.
David has been most patient, awaiting her presence on the phone, I’m sure, with a great deal of anticipation. I back out of the kitchen, allowing Jennifer a woman’s privacy for her conversation, but it doesn’t matter. Even if I go back upstairs or out on the lawn I can hear her shouting her high-pitched affection. “David, I love you! I love you, David!”
There is a pause, just long enough for David to say, “I love you” back. I know the duration and the speed of the three-stroke tempo these words command. Their conversation is always the same: limited to love and the memories of first meeting— limited by the constraints of their willing but impossible bodies.
“David, I met you at SCAMP,” Jennifer screeches, and I wonder what David is thinking on his end. What kind of woman he might otherwise romance if his legs could bear his weight, his lips produce a kiss, his arms effect an embrace. Though physically disabled in nearly every way, he is much brighter than Jennifer, and he knows he met her at SCAMP. I picture him receiving her comment as if he were truly astonished, for Jennifer’s sake. He seems infinitely patient; perhaps patience comes second nature to him, a necessity, bound as he is to a life without mobility.
Strapped for hours at a time in his wheelchair or in his hospital bed, David has little to occupy him besides his thoughts. I have my suspicions about his cunning: how he prods the attendant at his group home to dial the phone for him; how he urges her to hold the receiver to his ear, but to not eavesdrop; how he plots to find time and place with Jennifer.
Jennifer endures a long silence, holding the receiver close to her ear, straining to hear whatever might come next. David, perhaps distracted, has gone silent on his end. Apparently satisfied that the conversation has ended, she plops the receiver into its cradle and begins making her way back to her bedroom.
The day comes when he places a personal call to me. I hear him emit a tongue-manipulating, “Woul’ shou bring Jshenny over to shee me?”
I am seized not only by his effort but the longing in his voice, and I commit to honor his request. I hear myself say, “Sure, David, of course I will.” Some part of me wants Jennifer and David to share in the euphoria of romantic love. I remember how love energized my life when it came to me, and philosophically, I believe that they are equally entitled. But some part of me is terrified, too. Will I have to chaperone their marriage, dole out her birth control? Will I have to comfort her with words she can’t understand if love, or David, dies?
While few have given birth, it is known that women with Rubinstein/Taybi Syndrome have a high likelihood of passing this rare mental retardation onto their children—giving birth to miniatures of themselves who have beak noses, sloping eyes, jointless thumbs, and stymied IQs. And as if that weren’t frightening enough, I know that Jennifer’s peculiar little body could never carry a child, to say nothing of her inability to raise one.
I am a pro-active mother. All her life I have fought for her right to lead an independent, full, and rich life—to strive for her potential, the way the rest of us do. I’ve taken on school systems, pressured the medical establishment, transported her to her job. Now arriving at the pinnacle of that effort, I ask myself if she, I, dare make this move toward love, with all its implications.
I sent Jennifer to SCAMP, a summer day camp for the “physically and/or mentally challenged” as the administrators like to call it, for the first time when she was scarcely five years old—and then again every year for twenty-six years. In addition to the fun the camp provides its participants, it offers a bridge across the summer season, building upon whatever skills and education the SCAMPers might have mastered during the previous school year.
Jennifer’s earliest camping photographs, my favorites, show her sitting on a gymnasium floor learning to sing with her friends, their fingers, like a gathering of fairies, translating Row, Row, Row Your Boat or Sunshine On My Shoulders into the sign language of the deaf, while more recent pictures show Jennifer and David on the beach, embracing at water’s edge, frothing with desire as if they were Burt Lancaster and Deborah Kerr filming From SCAMP to Eternity.
Although I am afraid, I decide Jennifer is entitled to the human pleasures, and I drive her to David’s group home, in the next city over. I am aided and abetted by their Scamp counselors who help me find the way.
Sometimes on days like today it would be better if I were the proverbial fly on a wall—a slightly less obtrusive and annoying presence. But as it is I am antsy, situated on a cream-colored, cushy sofa, surrounded by way too many throw pillows, and I am amazed at Jennifer’s behavior, there, just across the room. I am struggling to control that amazement, keeping my voice in check, trying not to lurch and jump every time she makes a move—my maternal instinct to rein her in when she promises to get carried away.
Jennifer, her enthusiasm propelling her forward, is seated on the very front edge of an oversized footstool, and David is in his wheelchair before her. David was roused from a nap for this, Jennifer’s first visit with him outside of SCAMP. They have not seen each other in months. His attendant in this county-run group home where he lives, named Danetta, has gone to another room to fetch the carnations he has bought my daughter for Sweetest Day, although Jennifer is unaware that such a holiday even exists. The toothless Danetta, grinning and chatting affectionately, loves the idea of their love and, in cahoots with David, has planned a grand presentation for the flowers.
While she is out of the room, Jennifer clasps her hands together and shoves them between her knees, tilting her head coyly to one side and batting her eyes, as if she were a purring actress in a Rudolph Valentino film.
I can scarcely believe what I’m seeing and hearing. She appears to have absorbed every hokey gesture from every Big Screen romance she’s ever watched and made them her own. Jennifer preens, she fauns, she swoons. Her hands go before her breasts now, her voice suddenly Bette Davis-deep, airy and sensual, something more than a whisper. “I love you, David. I’ll be the best, brightest babe you ever knew.” She shakes her head gently for effect while David looks on, infatuated, bemused.
Because Danetta has not attached the foot rests to David’s chair, his legs hang awkwardly, suspended like those of an abandoned marionette when the strings are too tight. His right foot begins to shake up and down uncontrollably, like Thumper’s in the movie Bambi.
I know David is excited—just as besotted as Thumper—what I don’t want to know is how much? I engage my rational mind. His foot thrums the air because some obscure nerve lost in that tangled body has misfired. He is not, please, have mercy, sending Jennifer sexual messages that are beyond me.
Jennifer is so completely unabashed about her intentions. She reaches forward and clamps poor David’s twisted fingers in her hands. I cannot tell from my position if she is squeezing, as she is sometimes prone to do.
“Don’t hurt David,” I yell, finally overriding my restraint and going to sit beside her.
David’s head goes way back so that he looks at the ceiling. This response is part delight, part cerebral palsy asserting itself. He urges his face back down.
“Don’t worry, I will shay shomeshin if she doesh.” He directs his voice to me, but his eyes are on Jennifer.
At this, she releases his fingers (I notice the blood drain back into their tips) and she grabs the armrests on his wheelchair. With mind-boggling speed and agility—as if she had both practiced this maneuver and honed her strength on a rowing machine—she sweeps his chair, and him, between her legs. He is there in an instant, his knees brushing her inner thighs.
David is thrilled. I am mortified. At Jennifer’s audacity. At my unspoken concerns. I notice the taped corner of David’s paper diaper peek over his belt. The sight is both reassuring and heartbreaking to me, but Jennifer pays no attention. Her face is more alive than I have ever seen it. “David, I love you,” she gushes.
As if on cue, the carnations present themselves. David takes them from Danetta, gives them over with a strained reach, and Jennifer accepts them, but she is much more interested in a hug and kiss.
She rises and goes to embrace his shoulders. Stretched to full length, she stands at the same height as David when he is seated. The woman inside her knows what she wants; she plants a kiss on his cheek, presses herself against his chest, lingers there, and David attempts to wrap his all but useless arms around her.
Danetta and I utter sweet, stereophonic Aws—as if our voices were being piped in from two sides of the room.
When Jennifer’s hug becomes a little too eager, I peel her off David and insist that she sit back down, attempting, myself, to conjure up small talk. As a distraction, I help entertain their fantasy as David and Jennifer begin planning their first date. She wants to have dinner at the Red Lobster, while he would prefer a movie. My mind whirls. Yes, I would drive her to meet him if an attendant could get him to a rendezvous.
David, showing the stunning depth of not only his affection for, but his understanding of Jennifer, says he has been working on a picture of the Titanic for her but has not been able to render it perfectly because he can’t draw well. It will come eventually, he says. Jennifer goes wild at this news, hooting and clapping at the prospect that a portrait of her obsession will be given by the man of her dreams.
Suddenly she wants to see David’s bedroom. She asks boldly, “Can I see your room?” Jennifer rises once again and pivots David’s chair, begins nudging him down the hallway as Danetta and I follow, two anxious cocker spaniels.
David’s room turns out to be a sparse affair, dominated by his bed and a hoist on one side, and an empty bed that awaits a new client on the other. Things are in a bit of a clutter. I can see how he must have pored through his open drawers recently, dropped his belongings, been forced to leave them on the floor. His sheets are in disarray. On his brown dresser there is a stereo system, his prized possession, and beside that, at somewhat of a distance, a silver urn that, Danetta informs me, contains the remains of his mother.
I am at once struck by what seems a macabre addition to an already uncomfortable environment, filled with compassion for David, and reminded of my own mortality. His mother has been dead just over a year. I envision the woman she must have been, long in the limbs and dark-haired like David, her face impossibly forlorn. I notice the way my own spirit wants to step in as her surrogate. I feel her giving me a nudge from the other side.
Danetta stands behind David and mouths with her gums and lips, “His father doesn’t want anything to do with him.” David breaks the silence, speaking of his mother’s death without betraying a single emotion, while Jennifer, at his side, makes a mental connection and announces, “Your mother is in heaven.”
“I hope sho,” David says.
In what seems like short order, we lose track of David. After several visits and months of phone calls, one day I simply notice that the phone has stopped ringing. There is a not-so-conspicuous change to the overall tenor of our noisy household.
Certain that they must miss one another I think about David and Jennifer’s love. I feel optimism pull at me, a quixotic notion that I can rectify this, that I can nudge along something akin to happiness for them, if I try. On a piece of computer paper, I write Find David as if he were a misplaced screwdriver. I leave the reminder on the kitchen countertop, where for weeks I shuffle it around lunch fixings or the dinner dishes, waiting for the day when I will have time to commence a search.
When I finally call, we learn he has been swallowed up by the community mental health system, moved to a different group home without warning.
“David doesn’t live here anymore,” Danetta says bluntly into the receiver. “He’s somewhere closer to you, supposedly.”
I sigh. David must be waiting out there in the world, full of hope. I think that he’s close in the same way that a moon on an elliptical path sometimes moves in on its planet, even as the forces of nature push it away.
I am ashamed to admit that I have eaten the chocolates Jennifer bought for him for Valentine’s Day. I rationalize that they would be stale by now, early June. I say to myself, “We can buy more”—but I’m not fooling anyone. Store shelves are stocked with July Fourth fireworks and beach toys. There’s not a red box heart for miles.
David would have been thrilled with that box heart, too. He, the quintessential romantic who said to me during a visit one Christmastime, as he handed over a bottle of perfume to Jennifer, “She told me over the phone she wantsh to kish me.” He caught my gaze with his own, blushed, and followed up with a copper ring for her finger—a hand-me-down, dime store band inherited from his cousin. “Can I ashk her to marry me now, or do you want me to wait?”
David’s question hovered in the air and then dropped into the hole I reserve for questions with impossible answers. I felt it hit bottom. “Maybe you should wait,” I said.
From his wheelchair, after I locate him through our community mental health channels, a full two years into their hit-and-miss relationship, David finally orchestrates the perfect first date with Jennifer. Some three months have passed since Danetta told me of his move, and he is now, indeed, living only a mile or two from our house.
David’s and Jennifer’s meeting is the kind of date Cinderella and Prince Charming might have had, had the clock not struck midnight just when things were going well for them. David calls on a weeknight and pronounces with an empowerment that I can’t help but admire, “I’ve made plansh for ush.”
“I bought ush ticketsh to the prom. They were thirty dollarsh.”
I think about the magnitude of this expense in his government-funded life, and I hear myself agree to bring Jennifer to his special education school on the appointed night.
He wants to know what color dress she will wear, and I say pink, knowing all the while that Jennifer will show up in her good white slacks and a mauve blouse. It is impossible to fit her body into a dress, and I have long since given up trying, but how can I explain this? Why would I want to go into all the details at this very moment?
“Jennifer will be excited,” I tell him.
The night is, as David will soon observe, a perfect night for a prom. The weather is clear and tepid. The sun burns a marvelous tangerine in the evening sky, administering just the right dose of romance.
We arrive at the prom ahead of David and are greeted by a bevy of enthusiastic PTA mothers bent on making this a memory-worthy night for their children. Most of those in attendance are students of the school, young men and women in their early to mid-twenties, with all manner of complicated mental and physical disabilities. Jennifer seems to be the only outsider, but not for long. She is, as I like to call it, “fully gussied” for this affair. Accenting her silk blouse, she has on four bracelets, nine of her favorite beaded necklaces, in all colors—everything from wooden to glass to shiny metal—and four plastic rings pilfered from the dentist’s treasure box.
She quickly ingratiates herself with the PTA moms by announcing, “I’m waiting for my husband. He’s my best true love I ever met. I’ll be his lovely bride.”
Jennifer has fantasies that she is going to replicate her sister Holly’s marriage ceremony in the gazebo of our hometown’s scenic little park. Her comment is met with a series of smiles and hums, the mothers looking at me with understanding.
Jennifer squeals when she sees David’s van finally pull up. He exits it with help from an aide, dressed in his best clothes, twisted to dating perfection in his wheelchair, with a pink corsage pressed into his hands.
“Mom, it’s so romantic,” Jennifer gushes. She is feigning Valentino kitten again. “Here comes my best, true love.”
I slip the corsage, which David says he ordered only today, onto Jennifer’s wrist for him, and she surprises me when she says, “You can leave, Mom”—gripping the wheelchair’s handles and pushing it toward the action.
I am a confusion of emotions: proud of her and delighted to be sharing in her delight, afraid to leave her in a crowd of strangers, touched by her desire for adult independence even as I am aware that she’s still mostly a child. We compromise when I drift off to the far, distant end of the cafeteria, way beyond the dance floor, beyond even the disc jockey and the dining tables to a bench in no man’s land, where I set up watch, like an owl on a barn rafter.
The evening’s festivities begin with song, Prince’s Let’s Go Crazy—which strikes me as a somewhat ironic choice. From my spot as spy, I notice that Jennifer and David are totally involved already. They are oblivious to those around them: the stumpish girls who swim in their oversized evening gowns, the spastic break dancers, the ecstatic young Down Syndrome man who is on the receiving end of a bump and grind.
Jennifer and David hold hands. They hug and kiss. They pause and gaze into one another’s eyes. They arm polka, Jennifer moving David’s left arm up and down as if she were dancing with an old-fashioned water pump.
After an hour, the mothers dish up a chicken and rice dinner, but Jennifer and David scarcely seem to eat. I know from experience that excitement has claimed a victory over Jennifer’s otherwise insatiable appetite, but I’m not sure about David, who is something more than a paraplegic, something less than a quadriplegic. I amble over and, not wanting to embarrass him, ask him in a whisper if he needs help with his food, and he tells me that he does because he doesn’t want to spill on his good clothes. It would be different back at the group home, he acknowledges. There, he could wear all the food necessary to get some into his mouth. But on a date, especially this date … well, things are different.
I seat myself next to him and begin to fork rice into his mouth. Jennifer does not take this move well at all. “I want to do it,” she says, summoning a pushiness that is new to both of us. “Let me do it!”
Surprised, I hand the fork over and watch while she delicately spears a piece of chicken and moves it to David’s lips. He rolls his head back and opens his mouth to receive it, submitting to her completely.
She pushes the food at him tenderly, more tenderly than a mother bird might feed her tiniest, most favorite fledgling. Every muscle and nerve in her body is focused on his satisfaction, and I cannot help but realize that a woman I have never known now sits before me.
Art by Matt Monk
Carolyn Walker’s work has recently appeared in such publications as Crazyhorse, The Southern Review, and Columbia: A Journal of Literature and Art. Her memoir, EVERY LEAST SPARROW, was released in 2017. The book details the story of her daughter Jennifer who was born with Rubinstein-Taybi syndrome, a rare condition that affects mental and physical development. A MOTHER RUNS THROUGH IT—a collection of her creative nonfiction—was released in 2001. Her fiction, creative nonfiction and poetry were published in the anthology AT THE EDGE OF MIRROR LAKE. Her journalism has appeared in HOUR Detroit Magazine; Detroit Monthly Magazine; Michigan, the Magazine of the Detroit News; the Detroit Free Press; the Flint Journal; the Oakland Press; the Observer & Eccentric newspapers; and The Clarkston News. Carolyn’s journalism has won awards from the Suburban Newspapers of America, the Michigan Press Association, the Better Newspapers Association, and the Association for Retarded Citizens. She teaches writing at the college and university level, has taught writing workshops in local school districts, and is a member of Detroit Working Writers and Creative Writers in the Schools.