Hope: A Novel

By Victoria Ferrante

As a nurse hands Christina Borysowski her newborn daughter, joy ?lls the new mothers heart. With wonder, she lovingly admires the baby she has named Hope. Her body tingles with excitement and fear. Hours later, Hopes eyes open to reveal spectacular turquoise irises. Christina has no idea that months later, the sparkle and life will abandon those beautiful eyes, the gaze will turn inward, and Hope will lose all interest in the world.

Years later, life cannot get any worse for Christina Borysowski and her profoundly autistic daughter. With Hope destined for a future that promises nothing but bleakness, isolation, and likely institutionalization, Christina is paddling alone against the strong tides of prejudice, misunderstanding, and fear. To compound matters, there is much more at stake than just Hopes wellbeing. Christina is barely hanging on. In a desperate quest to ?nd peace for both Hope and herself, Christina is left with an agonizing choice that will determine the future for both of them.

In this eye-opening and poignant story about autism and its tragic human cost, one woman takes an unimaginable journey through hopelessness to discover an intense love that drives her to make the unthinkable a reality.

• Language: English
• Publisher: iUniverse
• Release date: Dec 1, 2011
• ISBN: 9781462062386

Victoria Ferrante

Victoria Ferrante is the mother of a profoundly autistic daughter and a son with Asperger’s syndrome. She has been writing poetry, plays, and stories since she was seven years old. She lives with her children, husband, and beagle in Howland, Ohio.

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Contents

NO END IN SIGHT

Present Day: April 5, 2004

ROCKING THE CRADLE

February 7, 1993

October 30, 1993

August 22, 1994

December 23, 1994

December 24, 1994

FROM HOPE TO DESPAIR

February 15, 1995

March 1, 1995

April 14, 1995

HELP

May 15, 1995

June 13, 1995

August 29, 1995

September 7, 1995

September 8, 1995

GOING NOWHERE

May 3, 1996

May 31, 1996

January 23, 1997

September 25, 1999

MODERN MEDICINE

December 20, 1999

January 23, 2000

January 6, 2001

April 12, 2001

NO EASY ANSWERS

June 5, 2001

July 6, 2001

August 10, 2001

August 13, 2001

August 20, 2001

August 31, 2001

September 5, 2001

FROM HOPE TO TERROR

April 27, 2002

August 10, 2002

January 17, 2003

June 12, 2003

BACK WHERE WE STARTED

November 7, 2003

February 7, 2004

INTO THE ABYSS

March 3, 2004

April 2, 2004

HOPELESSNESS

Present Day: April 5, 2004

AFTERWORD

For my daughter, Adrianna, whose presence in my life taught me the peace and beauty of acceptance.

Thanks to Ian Gurd, Lisa Robinson, Krista Ferrante, Amy Hulan, and Maria Ronzitti for encouraging me to write Hope. Many thanks to Tim Orcutt for sharing the first chapter of my early manuscript with Jody Kordana, editor extraordinaire. My overflowing gratitude to my editors at iUniverse, Elizabeth Day and Dana Kasowitz. Your guidance has made this book the best it could be. Much appreciation to the following people who have assisted me at iUniverse: Sierra Saul, Nicole Bilby, and Krista Hill.

I want to thank Teri at Julia’s Bed & Breakfast in Hubbard, Ohio, where I stayed for several days in July 2011 to finish revisions on my manuscript. She made certain I had everything I needed to write comfortably. What a beautiful place, and so perfectly quiet for a writer!

Big kisses to my dear friend and fabulous artist, Daniel J. Work—Painter for the People—who designed my cover, and hugs to my brother, Basil Ronzitti, who spent a great deal of time cropping and adjusting it. I love you both!

Most of all, thank you, Tim, my loving husband, for supporting the writing of this novel. I’ll kiss your wedding ring, dear, if we ever find either of them.

A human being can survive almost anything, as long as she sees the end in sight.

—Elizabeth Wurtzel

NO END IN SIGHT

Present Day: April 5, 2004

Inside the garage of the split-level house, Hope shrieked and screamed in endless succession. She rocked back and forth in the backseat of Christina’s green Alero. Christina watched Hope from the doorway to the house. She could see the sticker plastered on one of the car’s back windows that warned in stark white letters, Emergency Personnel! Person with Autism! Below this, in permanent marker, Christina had scratched in nonverbal female child. She had not bothered with Hope’s name. That would have been a waste of time and ink, because Hope never responded to her name. Underneath this, Christina had listed each of Hope’s medications and crossed them out when she discontinued them.

Christina ran up the double flight of stairs from the garage to stand in front of the bay window in her living room, but remained well within earshot of her daughter’s cries. The window reflected a transparent image of her. Wisps of black hair, struck here and there with bolts of lightning white, escaped the hood of her plum-colored parka. At five foot one and down to a skeletal ninety-seven pounds, she looked like a child-sized, flamboyant figure of death.

She cradled her right fist in her left hand and contemplated the thin, bleeding gashes on her fingers and in the soft spot between her thumb and index finger. Hope had peeled back the skin, exposing the raw, capillary-dotted flesh underneath. Christina knew better than to put her hand near her daughter when she was in the middle of a meltdown, but she had had no choice. She could not drive home without Hope safely belted in the car. Christina gazed at the wounds in the discerning manner another woman might consider a ring at the jewelry store. The scratches would fade from angry red to indifferent pink, tattooed where she would always see and always hate them, just as she already hated the beaded scars crisscrossing the top of both hands and her forearms. Her wounded hand burned, but the physical pain left her unmoved. She was long past crying about physical pain.

Christina glanced at the cat clock on the living room wall. It pictured a different cat at every hour where numbers should have appeared. Hope’s younger brother, Daniel, gave it to Hope for her tenth birthday last year. Hope’s room overflowed with cat books, cat posters, and toy cats. She had a tear-away cat calendar on her vanity. Hope followed Christina around day and night saying, This is a… to which Christina would add, …cat. Meow! They would repeat this until Hope bored of it, which was long past the same point for Christina, who would be at the pulling out her hair if Hope makes me say this one more time point. But, better for Christina to be at the end of her rope than Hope. The hour hand of the cat clock pointed at the Sphynx, and the minute hand crept upon the Persian—almost nine o’clock to the rest of the world. In a few moments, the ridiculous clock would meow the hour, not that Christina would be able to hear it over Hope’s meltdown.

Outside, the full moon refused to give up its roost in the morning sky. It seemed to regard Christina with the same indifference as the woman and her child walking by her house. The wind whipped their carrot-colored hair back from their ears, all the better to hear Hope’s screams. They stopped for a moment to ascertain the direction and significance of the screams before they continued past her driveway. Christina felt certain the woman would not call the police on the cell phone she held glued to her ear. She would not pound on Christina’s front door and yell, Is everything okay in there? None of the neighbors ever did. It was not their problem.

Christina took a step closer to the window, a step closer to them. A bit of emotion stirred life back into her pale face. Desperation lit her golden-brown eyes. She watched this duo stroll past her house each morning from the shadows of her living room. They lived in the house behind hers. Just last night, Christina wished on a star to switch places with them. She knew it was crazy, but her whole life was crazy. So maybe it could happen. Why not?

Christina turned her eyes back to the cat clock. She focused on the Maine coon that reigned at seven o’clock. He looked like her cat, Meow—white fur and blue eyes, dead almost six months now. Christina addressed the seven-o’clock cat. She’s letting her daughter skip on ahead of her. Christina looked back out at the little girl. She guessed her to be around four or five years old. She turned back to the Maine coon. If I did that, Hope would run out into the street. She would try to dive into the drains.

Christina walked with Hope too. She forced Hope to go because the exercise calmed her and helped ease her chronic constipation. Hope sped along on a mission to get back to her toys, television, and computer. Christina chased after her, her heart pounding more with anxiety than exertion. She kept a death grip on Hope’s coat or shirt the entire time.

Christina moved forward until her face pressed against the window. It would leave a smudge behind. She chastised Daniel for this sort of thing, but at that moment, all she cared about were the objects of her envy. The woman took her eyes off her daughter. This would be instant death for Hope if Christina did the same. The woman gazed up at the sky, said something into her cell phone, and laughed.

Christina could not remember the last time she laughed. Christina could not remember the last time she chitchatted on the phone with anyone. Hope hated when Christina talked on the phone. She expressed her distaste by attempting to pull the receiver away from Christina’s ear. Christina would resist, squashing the phone against the side of her head and sprinting through the house away from Hope. Christina locked herself behind a door once, but Hope screamed and beat her fists bloody on the other side.

The woman and her daughter had passed the house now. Christina saw her neighbor walking away from her with the cell phone still glued to her ear. Christina turned to the cat clock again. I wonder who she’s talking to, Meow. Christina raised her eyebrows. A sister? A friend? A lover? Is she making plans for the weekend? The last time Christina went out to dinner, she was pregnant with Hope. She struggled to remember the last movie she saw in the theater. It was Bram Stoker’s Dracula. When was that? 1992? 1991? The white cat on the clock just stared at her, the way Meow might have. Who would want to watch Hope, Meow? Who would be capable? She raised her bleeding hand to eye level. I can barely manage and I’m her mother.

Christina dropped her hand and glanced up through the window at the morning sky. Piles of cottony gray clouds gathered in the northwest. This time of year, they might bring rain or snow. The full moon hovered with autistic stubbornness in the cloudless South. Christina had heard somewhere that staring at a full moon through a window brought bad luck. A sarcastic grin stretched her lips. Things could not get any worse than they already were. Hope screamed down in the garage while Christina stood in her living room with blood dripping from her hand to form perfect, crimson circles on the hardwood floor below it. The fading moon reflected in both her pupils. She allowed its pale light to carry her mind back in time through the memories of her undoing.

Hope is the denial of reality.

—Margaret Weis

ROCKING THE CRADLE

February 7, 1993

A blizzard shrouded the full moon in the predawn hours of the morning. It was exactly four weeks before the baby’s due date when Christina pushed Hope Audra Borysowski into the world. The wind from the lake-effect snowstorm bemoaned the baby’s premature arrival with a howling dirge. In a fit, it banged on the windows with knuckles of swirling snow. No one inside the warm delivery room paid it any attention. The nurses gathered around the foot of the birthing bed, not to admire the newborn but, rather, the rare true knot in her umbilical cord. Pulled tight, this knot may have cut off the baby’s supply of oxygen during the birth. Christina thought the child certainly chose to have quite a chaotic entrance, but it would be something they would laugh about together someday.

A nurse handed Hope to Christina. Joy filled the new mother’s heart as her infant filled her arms. Her body tingled with excitement and fear. Christina looked with wonder at Hope. She leaned inches from her baby’s face and inhaled. A sweet scent, almost like apricot, filled her nostrils. Long lashes shaded the open slits of Hope’s sleeping eyes. Hours later, they would open to reveal irises a tropical shade of turquoise. Those eyes, dark for a newborn, would elicit oohs and aahs from upon whomever they settled. Months later—about the time the sparkle and life abandoned them, about the time their gaze turned inward and they lost interest in the world and the other people who populated it—they faded into the cool shade of silver that ran on Pete’s side of the family.

Christina brushed aside the baby’s copious amount of fine, black hair, a gift from the Greek ancestors on Christina’s mother’s side of the family, to expose a strawberry-colored birthmark in the rough shape of a horseshoe on her temple. Christina smiled at it. A good luck charm. Christina believed it had protected Hope from the dangers of her premature birth and her true knot. Christina counted the fingers curled into Hope’s fists and the toes topping each tiny foot. All were there. On the day of Hope’s birth, unsuspecting Christina breathed with relief at her daughter’s physical perfection.

Christina’s husband, Pete, pressed his lips to Christina’s forehead. His kiss clung cold and wet to her hot, sweat-soaked skin. He whispered in her ear, She’s beautiful, hon. Christina thought it was the best thing he ever said to her. A smile bloomed on her face.

After allowing the new family to become acquainted, the nurse returned to take the baby to the nursery while the doctor stitched Mom back together. Pete used the phone next to Christina’s bed to share the news with his family; they couldn’t stop baby from coming this time but everyone was doing well. Christina hated being separated from Hope so soon. She worried the nurse might confuse her with another baby and bring the wrong child back to her later. While the doctor worked, she reviewed Hope’s features in her mind. She recalled her smell.

When the doctor finished, another nurse maneuvered Christina into a wheelchair with Pete’s help. The nurse settled Christina in her room. Then she wheeled Hope’s bassinet next to the bed. Hope slept through the jostling. Christina lifted her from the bassinet and cradled her in her arms. She positioned Hope over her heart. Hope’s warm breath caressed the side of Christina’s neck. A love like Christina never felt before ignited, not just in her heart, but in every cell of her being.

Pete kissed them both good night before going home to prepare the cradle passed down from Christina’s family. She was the last baby to sleep in it. For some reason, her father had dismantled it before he stored it in his attic. They had yet to reassemble it. Their first pregnancy had been busier than expected. Pete darkened the room before he disappeared through the door. His echoing footsteps faded down the hallway.

Christina held Hope until sleepiness made it too dangerous to continue. She laid the baby in the bassinet. Then she pulled it toward her until it touched the side of her bed. She slipped into sleep with her arm draped over it and a smile on her face. Pleasant dreams of the future filled her night, but she let them slip away from her memory.

October 30, 1993

Baby giggles floated like feathers in the air until they reached the upstairs bathroom of Christina’s mother-in-law’s house. Christina, squeezed into an uncomfortable bridesmaid’s dress and in the act of brushing mauve powder to her cheeks, paused to listen to the sound. The laughter tickled her ears and lifted her spirits despite the awful gown. She thought she had left hoop dresses behind after her senior prom ten years ago. Somehow, Christina’s sister-in-law managed to dig up the last remaining Victorian-style frocks. The tinkling titter came again. She set the makeup down on the sink and followed the musical sound down to the kitchen.

Christina’s begowned, beflowered, and bejeweled mother-in-law, Linda, stood against the mural-covered wall of her breakfast nook. Christina’s preparation for this big day did not compare with her mother-in-law’s. Linda’s professionally coiffed black hair shimmered with purple accents. Diamonds winked on her earlobes and sparkled around her neck. The gloomy, pastoral mural on the wall behind Linda contrasted with the vibrant colors of her makeup and dress. The cloudy fall scene, painted in browns and dusky orange, appeared more dismal than usual compared to the joy on Linda’s face as she watched her fraternal twin sister, Lucy, play with Hope.

Aunt Lucy, whose personality was the antithesis of Linda’s, sat at the table. Her salt-and-pepper hair hung in a simple bob cut around her unmade-up face. No jewelry adorned her ears, wrist, or neck. She sported a pale-blue polyester pantsuit and a simple, white blouse. Eight-month-old Hope was plopped on the table in front of her. Aunt Lucy clapped her thick, housework-chafed hands and sang the Itsy Bitsy Spider song. Hope giggled. Christina thought if she could bottle the sound, she would be able to sell it as an antidepressant. Aunt Lucy turned to see who entered the kitchen and smiled at Christina. Her eyes glittered with excitement. Watch this.

She turned back to Hope and began to sing again. Hope gurgled. A smile further fattened her chubby cheeks. Aunt Lucy’s fingers and thumbs climbed an imaginary waterspout. Hope’s eyes locked onto Aunt Lucy’s hands. Hope raised her arms one over the other in an attempt to mimic the movements. Aunt Lucy tickled her. What a smart girl. Laughter tinkled from Hope’s glistening lips. The three women laughed with her.

The following day, Hope developed the first of several chronic ear infections. The infections lasted through five months of increasingly potent antibiotic treatments and ended in bilateral tympanostomy tubes. Hope woke up screaming from her surgery. Then, she woke up screaming in the middle of the night—night after night. She screamed away most of her days after that, except when napping while being held by a moving body or swaying swing.

During Hope’s increasingly rare calm times, Christina tried to play the Itsy Bitsy Spider game with her. Hope frowned and tilted her head to the left. Within a few months, she would not look at Christina at all.

August 22, 1994

Hope struggled on Christina’s lap like a worm squirming on the end of a fishing hook. They had waited in the examination room for at least thirty minutes. Christina had counted the colored tiles placed randomly among the white tiles on the floor at least one hundred times. There were fourteen of them: three yellow, six blue, and five red. They reminded her of rotten teeth. She wanted to pull them out. Christina wondered why they bothered scheduling appointments at the doctor’s office. They should just say, You will be seen sometime in the morning on August 22. Plan to be here for several boring hours. It would be more honest.

Christina preferred to keep Hope on her lap or on the bench provided in the room, but Christina knew from experience that Hope would sit on neither. She too was fascinated with the colored tiles on the floor. Though most of the room met Christina’s high standards of cleanliness, many people had trampled through here with the dirt-covered soles of their shoes, but Christina’s arms ached and so did her back. So, she set Hope’s diapered bottom down on the cool, dusty floor.

Hope flapped at the colored tile immediately below her gaze. She leaned forward with the easy flexibility granted only to the very young and licked the floor. Christina grimaced. The humidity of the day, the long wait, and her second pregnancy had sapped her energy. She resisted the urge to whip Hope off the ground and sanitize her tongue. Besides, that would result in nothing but a tantrum and a miserable exam.

The thought of saying no never occurred to Christina. When Hope was absorbed with something, especially when her back was toward a person, words floated over her like clouds on a spring day, unnoticed on their way from one end of the world to the other. In fact, Christina was certain spoken words meant nothing to Hope at all. This worried Christina very little. It was a temporary annoyance, like a fly buzzing around a picnic. With Hope’s premature birth and the chronic ear infections, she was bound to be behind in language. Christina was certain Hope would catch up.

She heard a scratching sound on the other side of the wall just outside the room. She guessed it was Dr. Pasternak pulling Hope’s chart out of the slot next to the door, but the sound made Christina think of the Nightmare on Elm Street movies. As the door creaked slowly ajar, she half-expected to see Freddy Krueger’s brown fedora and scarred face slip through the opening. Dr. Pasternak’s was only slightly less disturbing to her. He had reddish cheeks, an upturned nose, and small squinty eyes of an indeterminate color. He smiled unappealingly as he looked down at Hope’s back. Good morning, Hope!

Hope flapped at her beloved red tile. She leaned forward to give it another sloppy kiss as Dr. Pasternak’s greeting drifted overhead. The doctor shifted his beady eyes to Christina. And how are you, Mom?

Christina smiled tiredly. Hanging in there.

Dr. Pasternak smiled back. Good. And how’s my little patient here?

Christina was about to answer when he picked Hope off the floor. Hope stiffened against his touch. Christina’s response congealed in her mouth like drying cement. The hair on the back of her neck stood at attention. She anticipated the ear-piercing screams that would come from her daughter in the next second. Christina never—never—just picked Hope up like that out of the blue, unless she wanted to lose all of the cilia in her ears and unless she liked watching her daughter have what appeared to be a seizure.

Christina had found a way to avoid that disaster by using pictures. At bath time, she showed Hope a picture of a tub before she took her away from her toys. At dinnertime, she showed her a picture of food before she moved her away from the television. Hope was always so wrapped up in whatever she was doing, she needed ample warning of any change. Christina had a picture of an examination table she cut from a magazine in the diaper bag. She planned to give it to Hope before she lifted her to the table. Now it was too late to avoid disaster.

Dr. Pasternak appeared unaware he had pulled the safety pin out of the grenade he was now placing on the table. Hope’s mouth opened. Christina’s heart skipped a beat. Then a light reflected off the doctor’s stethoscope into Hope’s eyes. Her scream-to-be melted. She grabbed for the device hanging in front of the doctor’s coat. Dr. Pasternak turned his attention to Hope. Hey, you. You like that? Can I put it on your chest? Christina shook with relief. She coughed away

Reviews for Hope

[amandakerr · Rating: 5 out of 5 stars]

Intriguing and Poignant book about families that are dealing with autism and the struggles they endure on a daily basis. Written by an educator and a mother of an autistic child, this touching novel will leave you in tears.