BOOK EXCERPT: Every Least Sparrow by Carolyn Walker – “I Bring Forth A Rarity”
Every Least Sparrow is simultaneously heartbreaking and delightful in revealing the story of Jennifer Walker, a girl born with Rubinstein-Taybi syndrome, a rare and confounding condition that affects mental and physical development. Nearly every one of Jennifer’s body functions is adversely affected by this disorder, creating enormous challenges. Rubinstein-Taybi, however, cannot lay claim to Jennifer’s spirit, or her mother’s determination that her daughter live a full and happy life.
With the support of Jennifer’s father and siblings, and devoted pediatrician, they set forth on a quest to find the “normal” that every child deserves, and every parent hopes for. Their quest takes them from fear through desperation, to true enlightenment — a profound understanding of what it means to be human. Ultimately, all involved, and especially the mother, realize the gifts of Rubinstein-Taybi: enduring love, and even envy for the accepting and joyous life that is Jennifer’s.
Every Least Sparrow
Book: Every Least Sparrow
Author: Carolyn Walker
Garn Press (226 pp.)
$9.99 e-book. Ebook $2.99 through Kindle Matchbook Program. Available for free through Amazon Kindle Unlimited Program.
Paperback & Hardcover: Amazon | Barnes & Noble | IndieBound (local bookstore)
eBook Available: Amazon
Every Least Sparrow – Chapter One: “I Bring Forth A Rarity”
I’m embarrassed to say I no longer remember the time of day, or even the day of the week it was when Jennifer was born. It seems to me it was late in the afternoon, but my sense of time surrounding her birth has less to do with the hour than with the colors that accompanied her arrival. These I remember – the dulled creams, the ambers and crimsons and browns that evoked the slow but inevitable passing of a day into night.
I remember, in fact I can still feel, how the colors blanketed the activities in the delivery room, how they warmed and nurtured me as the saddle block anesthesia drained from my spine, freeing my legs so that I could roll onto my belly in the recovery bed. I made myself comfortable after six hours of hard pushing, entering into a sweet postpartum repose.
During the last three months of this pregnancy, Jennifer had taxed my capacity to expand. Though she would weigh in at a mere five pounds and six ounces, a tiny seventeen inches long, she and the amniotic waters that cradled her had stretched my belly far beyond the limits to which my son Matthew and daughter Holly had taken it.
With Jennifer, I became an undulating summer landscape, my stomach its central mountain, my swollen nose and cheeks and knees and ankles the nearby hills.
Overdue to give birth in the heat of late July, I counted the passing days and became increasingly expectant. I wanted this baby out where I could enjoy her. I therefore appreciated my obstetrician when he finally probed deep inside me, deliberately rupturing the membranes that kept her safe, hidden.
Later, as I settled into my room alone, I gave an audible sigh, a contented ah as comfort and satisfaction claimed me. Like me, Don was not aware that something was amiss, and, tired from the long day, but full of joy, he had gone home to help his mother tend to Holly, whom he would bring to visit on day three.
The soft mattress welcomed my engorged breasts, my exhausted belly, my legs and toes, my face. Lying there, waiting to hold my baby for the first time, I closed my eyes and drifted in and out of my own awe – I have another daughter. I played with possible names for her, cognizant of the way names carry connotations for a lifetime. Prudence. Ginger. Rose. Faith. Belle. Fanny. Candy.
Carolyn. I heard my name come tentatively through the curtains that separated my cubicle from those of two other women. I ignored it the first time, certain that the call must be meant for someone else. The name came again, raced off a man’s tongue, insistent. Carolyn. Carolyn. I turned to see our pediatrician parting the curtains and pushing his way toward me.
Even in the semi-darkness I could see that Dr. O’Neill’s eyes were working to take me in – searching to determine how I felt, how I was thinking, what I was thinking. The space between us was charged, as if we were two electrical forces exchanging a current of expectation. I leaned toward him, curiosity riding on my face, but Dr. O’Neill spoke before I could form even the simplest How’s my baby? He steadied his body, braced it, and summoned his resolve.
“I’ve been in the library researching for hours,” he started, and I was caught off guard, briefly mystified. I had no idea what a library had, at that very moment, to do with me.
“I think your baby has a syndrome.” Dr. O’Neill paused, allowing his words to reach me. They sparked and snapped, and I felt my heart lurch against them. My shoulders seized and the new-mother happiness drained from my face.
“What do you mean?” I was upright now.
Dr. O’Neill began to spout gibberish – “Spatula thumbs … webbed neck … cathedral palate … beak nose …”
I recoiled, blinked, gaped. From out of an inescapable fear that already perceived the truth, I conjured the question I most dreaded to ask, not really understanding why I felt compelled to ask it, only knowing that I must. The question was reflexive, primal, under pressure. It surfaced like a wad of hot gastric juice, and I spat it at Dr. O’Neill – “Will she be retarded?” I didn’t think to ask if the baby might die. I instinctively knew she wouldn’t. Although I had not yet seen her up close, I knew just as surely as Dr. O’Neill stood before me that I had given birth to a child who would live, but never lead a normal life.
Dr. O’Neill attempted to both inform and comfort me with his answer. He chose his words quickly, but carefully, veiling them in a modified truth that was meant to shore up hope and protect us both.
“No, she’ll be slow to walk, slow to talk, but she’ll learn to read.” He emphasized these skills, their possibilities, as if they contained the key to human happiness. His voice drifted off and he came to give me a hug, the kind he reserved for congratulating new mothers. As he did so, I felt the cage of irrevocable, unalterable change close around me.
Dr. O’Neill’s hug betrayed his uncertainty, but because I felt sorry that he had been made this unfortunate messenger, I met his compassion with a measure of my own. I hugged him back, and I let him escape with his lie.
The night passed, close and oppressive like a stalker, but no one dared to remove the baby from the intensive care nursery where she was being monitored and bring her to me.
In the same way, no one came to escort me down the hall to her. I had all the urges and longings of a healthy mother, but I had a complicated birthing history and no personal reference point from which to measure a normal experience. Our first child Matthew, who was delivered prematurely, had died from under-developed lungs when he was one day old. Holly, also premature, had been hustled to the specialized preemie nursery as a precaution before I could so much as get a good look at her. Not knowing what else to do, I waited this morning for someone with authority to take action.
Just after dawn, a nurse came to awaken me. Poised with my breakfast and a blood pressure cuff, she shoved aside the curtain and found me, a quivering mass, sitting up in bed. “What’s the matter?” she asked, although she most surely knew.
“I want to see my baby,” I said. “I haven’t seen my baby. Dr. O’Neill said there’s something wrong with her.”
Neither my heart nor my mind could envision what I had given birth to. Was my baby a modern day incarnation of the Brenda of my childhood – a composite of overlaid circles? I remembered how Brenda, a gargantuan among splashing toddlers, gently placed her inflated black inner tube onto the waves of Sylvan Lake, and how she mounted that inner tube and cork bobbed, a fat round adult with a fat round head that housed a fat round face with wide round eyes and an expressionless O mouth.
Was she another Linda Lou, her form a series of contorted, junior high angles? I shuddered, ashamed at the way I once shrank down into my skin, made myself invisible, and let those two eighth-grade boys goad the clueless Linda Lou – “Hey, wanna go on a date?”
All that I assumed to be true about mental retardation I had gleaned while observing these two young women as they passed through my adolescence and into my nightmares – Nature’s cruelest joke.
“I’ll go get her,” the nurse said, surprising me. She turned and left and, my heart quickening, I called after her, wondering if it was safe, but my words fell short. Within moments she returned with a pink baby, squirming in an equally pink blanket in her arms. She handed the baby to me and said, “Go ahead, peel back the blanket and count her fingers and toes.” The nurse smiled, knowing I needed to run my hands over the chest, feel the heart beat beneath it, bend the arms and legs, caress the forehead with my lips.
The nurse knew I would fall in love with this baby, that all it would take to make things right would be for me to hold her in my arms. She handed her to me, then sat on the edge of my bed and watched while I tentatively turned the blanket back from the baby’s head. Its hemmed corner unfolded like the flap of an envelope, revealing first a spray of thick dark hair, and then a narrow face, crinkled as if to cry. Surprised by the light and perhaps the sound of my familiar heartbeat, the baby abandoned her cry, blinked her eyes, and attempted to study me.
I noticed that a large red birthmark patched her forehead, a stark contrast in color to those eyes. The soft spot at her crown yawned down into a cleft beneath the birthmark, almost touching her eyebrows. Its skin pulsed in rhythm with her heartbeat, as if a gentle drummer drummed beneath it. She raised her eyebrows then squinted. She puckered her lips, wanting to suck. She pushed her tongue out, groping for a nipple.
“Look at all that hair,” I said to the nurse, delight emerging in my voice. I didn’t know the baby’s hair shouldn’t creep so far across the hairline. I brushed my thumb under it, across the birthmark, and began imagining baby hairdos with pink bows.
“The birthmark will fade with time,” the nurse offered.
Then came, “Look at that nose!” I marveled, as it seemed so self-assured. It was an honest to goodness nose, a nose that was confident in its task.
The nurse urged me to proceed, to check everything, to reassure myself that here in this tenuous package lived a whole human being. And so I explored my daughter, observing and touching cautiously. I slid the blanket fully away, exposing her torso and tiny diaper then delicately pinched her thumbs, first one and then the other, between the tips of my forefinger and thumb.
They were a mystery to me. Jointless in their centers, they resisted bending, except at the base. When I released them, the baby tucked them to her palms and folded her fingers over them, instinctively protecting them. Her fists seemed only a little larger than a pair of marbles.
I moved my gaze to the big toes. The left one, thick and rounded, looked like a Lilliputian baseball bat. The right was doubled, shaped like a heart, and contained two square toenails, side-by-side windows overlooking a simple view of fresh baby flesh.
I turned her over in my hands and ran my fingers the length of her back, feeling a fine layer of invisible, downy hair. She was as warm and fuzzy as an African violet that had spent an afternoon in the sun. She drooped her head with trust over my palm. She allowed this touching, the way a drowsy lap cat allows petting. I stroked her and found another birthmark at the nape of her neck, and then down, a deep, furry dot at the base of her spine.
“The doctor says she has a syndrome,” I said. My voice was a whisper. My eyes met the nurse’s. She gestured at the dot, and meant well when she called it a “little tail”.
“That’s one of the syndrome traits,” the nurse said.
“I don’t want a child with a tail. I don’t understand what all this means,” I said.
The nurse stood and scurried from my room a second time, returning promptly with a large, navy blue medical book, nearly the size of a dictionary. “There’s information in here about the syndrome.” She urged the book towards me. Across its cover, in big block letters of tarnished gold, the book read, “MENTAL RETARDATION SYNDROMES.”
I grew flushed, more confused, but the nurse didn’t notice as she opened the book and skimmed the table of contents, then thumbed through the pages. I began to rock, a helpless child myself, but the nurse didn’t notice as she displayed an old, black-and-white photograph of a nameless adolescent girl.
The girl, who had Rubinstein-Taybi Syndrome, had a careless pageboy haircut with greasy bangs that were too short. She had a caricature face, and like the unfortunate Quasimodo was contorted, twisted, misaligned. Her thick eyebrows attempted to merge on her forehead, her nose reached off the page, her grin clawed its way up to her cheekbones, her teeth protruded and crossed each other, her chin receded into her neck, and her eyes, set in down-sloped sockets, refused to release mine.
Don made his first visit alone, just after the nurse’s presentation, arriving expectantly and with a blissful jaunt in his step. As he skipped into my hospital room, I greeted him with my newly long face and tried to paraphrase Dr. O’Neill’s words in a forceful blast, which up until that moment had been every bit as under pressure as water simmering in a closed hydrant on a blistering summer’s day.
“Dr. O’Neill thinks the baby has a syndrome.” The word syndrome came out of me surrounded by tears and a jettison of spit, like this – S-S-SIN-drome, as if I were some backwoods, snake-handling preacher spewing hell and damnation. Don stopped listening when he heard the word. His body went still, and his gaze, betraying alarm, looked to the floor.
Many long minutes passed. They hung in the air between us like icicles. I finally broke the silence with a tirade of her symptoms, gleaned from the haze of post-delivery, but they made no more sense to him than they did to me. I watched while Don winced against cathedral palate and spatula thumbs and beak nose. Then I bespoke the trickle down fear that had welled up inside me during the night. “Do you think you’ll be able to love her?”
I pressed the weight of this question into my eyes. Felt the swell of my face around them. I understood the way my eyes and face swung on the front of me, the way they were laden with anticipation and the importance of what would be his response. I needed him to love this inscrutable baby and I needed him to do it now. I contemplated the marital rift that I feared would accompany the word no.
Don shrugged his shoulders, stuffed his hands into his pockets and pivoted away. “We’ll see,” he said, I think not so much doubting his capacity to love as gathering himself from what must have felt like a lashing.
Don looked like Rodin’s The Thinker on day three, sitting there next to my bed in the metal and pea-green plastic chair, his fist propping up his chin, his elbow on his knee. His hair was combed neatly away from his face in the same style he had worn since high school. His cotton shirt clung to his form, the sleeves rolled, like always, up his forearms. We were slinging names around the room, wishing that one would boomerang back to us, a perfect fit for our baby.
“How about Stephanie,” he said, peering at me, but I didn’t like the name any more. I had liked it once, but now it didn’t seem right. It was too long, longer than our new daughter’s body. I suggested Tina, knowing that it wouldn’t fit either. Its spelling implied the unfortunate and obvious tiny. Don swung his head no.
I then suggested Jennifer for its beauty. Oh I know, it’s only one letter shorter than Stephanie, but it doesn’t have all those loops and hurdles, doesn’t flail around on the tongue quite so much. “We could call her Jenny, or Jen,” I suggested, urging. I harbored affection for the romance that surrounded the name, the way it’s derived from Guinevere.
Don and I batted the name back and forth sounding out its variations, finding ourselves in agreement, and then we pondered some companion names to go in the middle, between Jennifer and Walker. We struck a bargain with Jennifer Laurie. Jennifer after my Guinevere fancy, and Laurie in honor of my sister, Jennifer Laurie Walker Rubinstein Taybi, born July 30, 1977.
That evening we introduced Holly – she swinging her way on Don’s arm up the hospital corridor, throwing herself and a gift of M & Ms into my embrace, then stopping with an abrupt awareness of her surroundings, her eyes rounded and her belly pooched forward, toddler style.
She turned quietly and toed her way up the floorboards to make herself taller, her auburn hair sweeping her shoulders, an index finger slinking its way up to her nose, where it rubbed an itch as she considered the newborns. Studious even at age four, she peered through the nursery window without speaking before looking to Don and me for confirmation. We stooped in, flanked her cheeks with our own, singled Jennifer out from the others. Speaking one of us into each of her ears, we held Holly in the stereo of our whispers, soft but nevertheless energized. “There’s your sister.”
In the presenting of our daughters, Don and I felt happiness, at once assertive and inevitable, sidle its way into our little throng. Holly pressed her lips to the glass as if she were going to make a blow fish face by way of welcoming Jennifer into the world. Beyond it, Jennifer wriggled like a beetle on its back, the glow of the nursery lights blanketing us all.
The following morning, just before he discharged Jennifer and me by proxy, Dr. O’Neill faced down some more of my questions. One of them was a nagging question born of my emerging denial, which would swell and last for Jennifer’s first five years, until she was old enough for kindergarten and I could do no more pretending.
“Is there a chance she could be normal?” I clung to that word normal like it was a lifeline. A mother’s dreams can shape-shift with surprising speed. In less than a week, mine had shrunk, flip-flopped, all but disappeared. I no longer cared that Jennifer might not run for the United States presidency, or place in an Olympic decathlon, or be an honor student. Everyday normal would be good enough for me.
Dr. O’Neill nodded his head in a slow acquiescence. He allowed that it was possible she might grow to be a normal girl with no more strikes against her than those strange thumbs and even stranger toes. Granting me permission to take Jennifer home, he tried to make the leaving easy. “Take her home and love her,” he said – six simple syllables to inform the duration of our lives. In an earlier generation, he would one day admit, he might have suggested that Jennifer be institutionalized.
Early Book Reviews
$27.95 hardcover, $17.95 paperback, $9.99 e-book. Ebook $2.99 through Kindle Matchbook Program. Available for free through Amazon Kindle Unlimited Program.
Paperback & Hardcover: Amazon | Barnes & Noble | IndieBound (local bookstore)
eBook Available: Amazon
The word syndrome? Please just forget it. Read this marvelous book, cry and laugh, and enjoy. – Raoul Hennekam MD PhD, Professor of Pediatrics and Translational Genetics, University of Amsterdam, Medical Advisor of Rubinstein-Taybi support groups
“This is a wonderful and touching book that takes us into the world of disability –a world most of us know little about. The experience of actually entering this world is unforgettable. Jennifer Walker, born with RT Syndrome, teaches us all the importance of experiencing life with an attitude of “yes, I can.” Her spirit is amazing. You cannot help but admire her zest for life and fall a bit in love with this determined girl. Kudos to Carolyn Walker, Jennifer’s mother, for writing a book that is both heartwarming and heartbreaking. As a mother, myself, I walked with Carolyn through her confusing, frustrating and dark hours. I found myself shedding tears as well as feeling victory. I was so impressed with her ability to write with such honesty and love. This is such a beautiful story of Faith, Hope, and Love — “Faith to keep believing without seeing; hope to carry on when life seems dark; and Love that hangs around though problems do abound.” What an amazing family. What an amazing book. I definitely recommend Every Least Sparrow.” – Amazon Customer, AMAZON
“Every Least Sparrow is heartbreaking, funny, and up-lifting. Carolyn Walker tells her story with unflinching honesty and a notable absence of self-pity or melodrama. Beginning with the unusual birth of her unusual daughter, Jennifer, this well-crafted story pulls you in and doesn’t let you go until Jennifer grows up. The entire journey, fraught with frustration, despair and determination, is also saturated with love, not a thin, saccharine love but rather a robust, hard won, fierce and eternal kind of love. Beautifully written, a compelling read.” – Amazon Customer, AMAZON
“This book is so honest and raw and beautiful. It gives you an intimate, real-life view of a family riding the waves of raising and living with a special needs child. It is both joyful and heartbreaking. Carolyn weaves such detail into her writing that you feel like you are there, in the moments she spent raising her daughter, Jennifer. This book is an inspiring read for parents and families with special needs children and, truly, a wonderfully shared journey that will capture and uplift any reader.” – Amazon Customer, AMAZON
“Grace, courage and steadfast love is what you’ll find in Carolyn Walker’s new book. Unflinchingly truthful and at times emotionally wrenching, Walker describes growing up her daughter Jennifer, with RT syndrome, to independent living. This is a beautifully written many-layered book of family survival.” – Amazon Customer, AMAZON
“This is a very touching and heart-felt story that reveals both the anguish and the deep love and joy of caring for a sweet disabled child. It is surprisingly uplifting and is amazingly honest and very readable. I highly recommend this great book.” – Amazon Customer, AMAZON
“Great read you will find yourself inspired by Jennifer and her family. This book would make a wonderful addition to any medical or nursing school experience.” – Amazon Customer, AMAZON