Table of Contents
Contents
Acknowledgments............................................................................9
Prelude....................................................................................15
Chapter 1 A Baby Is Born...................................................................17
Chapter 2 Mesmerizing Music................................................................31
Chapter 3 Exposition.......................................................................47
Chapter 4 Hi Hopes.........................................................................63
Chapter 5 The Veil Lifts...................................................................75
Chapter 6 An Eerie Aptitude................................................................89
Chapter 7 And Music for All................................................................109
Chapter 8 Man on a Mission.................................................................127
Chapter 9 The Music Camp Experiment........................................................145
Chapter 10 The Genes of Personality........................................................161
Chapter 11 Pitch Perfect...................................................................175
Chapter 12 Sing of Rice Krispies...........................................................197
Chapter 13 A Place for Us..................................................................215
Chapter 14 Proof...........................................................................227
Chapter 15 ProfessionalPinnacle...........................................................241
Coda.......................................................................................253
An Open Letter from Howard Lenhoff.........................................................261
Appendix A: A How-to for Parents of Musical Williams Syndrome Children.....................267
Appendix B: Resources......................................................................271
Bibliography...............................................................................273
Index......................................................................................287
Read a Sample Chapter
the {strangest} song
One Father's Quest To Help His Daughter Find Her Voice
By Teri Sforza Howard Lenhoff Sylvia Lenhoff Promentheus Books
Copyright © 2006 Teri Sforza with Howard and Sylvia Lenhoff
All right reserved. ISBN: 978-1-59102-478-1
Chapter One
A Baby Is Born
It was a fine classical guitar, blond and broad-necked, with a tone as rich and smooth and warm as melted chocolate. Howard Lenhoff was not a particularly gifted guitarist, and he knew it. Frankly, he preferred oil painting, which he had dabbled in before. Before Gloria. Before his daughter's birth had obliterated so much of what he recognized from his life. The easel, the brushes, the paints, they would be an impossibility in their claustrophobic apartment, nothing more than quarry for the baby's demolition derby. He yearned for an outlet, an escape, something to soothe his fractured, frazzled nerves; he was only twenty-six, but he was exhausted. The year since Gloria's birth had been the most interminable, agonizing year of his life.
He settled onto the sofa, turning pegs and plucking strings to bring the guitar into tune. A room away, Gloria snapped to attention, as if the sound were a bolt of electricity. She dropped her favorite toy-a jingly key chain she would shake and shake until Howard wanted to scream-and crawled as fast as she could to her father's feet, hauling herself up and standing almost ontop of him, her nose practically pressed up against the guitar strings, watching, listening, with almost comical intensity. Howard strummed Elizabethan folk songs, classical pieces, sea yarns, cowboy tunes. Gloria stared wide-eyed at the strings the entire time, hypnotized, mesmerized by their luscious sound.
Gloria was never like other children.
Their odyssey began on February 11, 1955. Howard got the phone call at the lab, where he was working his first job as a research biochemist. He rushed to the hospital's nursery and peered through a pane of glass at the squirming bundle in the bassinet marked with his name. She was as tiny and wrinkled and fragile as a newborn bird, dark hair plastered to her skull like new feathers, deep indents on either side of her head bearing testimony to the difficult delivery and the doctor's decision to wrench her from the birth canal with forceps. His daughter-to spoil, to sing with, to walk down the aisle on her wedding day. Howard stared at the impossibility of her face: so round, so pink, with a pug nose and a tiny mouth that opened wide in an insistent cry. She didn't look like Sylvia, his wife. She didn't look like him. She looked, actually, like a tiny, angry elf. So very small, he could cup her entire body in the palms of his hands. Weighing just 5.5 pounds. It made him worry. But the doctors reassured him: she came fully equipped with ten fingers, ten toes, legs that kicked and arms that waved.
His daughter. Would she be sweet and studious like Sylvia? Or curious and keen like him? Would her eyes be green, like Sylvia's, or nearly black, like his? Would she love science and history and do well in school and make her parents proud, as they had? Would she be healthy? And happy? Howard and Sylvia decided to call her Gloria, in memory of Howard's beloved grandmother Geeta, whose name means "good" in Yiddish. If only she could see this, Howard thought. Geeta had been Howard's best friend in the crowded wood-frame house where he grew up in "the Swamp" of North Adams, Massachusetts. She spoke mainly Yiddish, having fled the pogroms in Latvia, and encouraged her mischievous grandson as he transformed the attic into a laboratory, created homemade fireworks from flash powders, and set off explosions trying to hydrogenate oil to make homemade Crisco. Geeta indulged Howard's obsession with books on chemistry and natural history, and when he became the first member of the Lenhoff family to be accepted into college, she wept with pride. Geeta died two years before Howard earned his bachelor's degree in chemistry, leaving him her most meaningful piece of jewelry: her wedding ring. For years Howard couldn't bring himself to wear it, but on the day he graduated, he slipped it onto his left pinky finger and felt as if she were with him, as if she knew, as if he had made her proud. The ring never left his finger after that day, and he fiddled with it as he gazed at his new baby through the hospital nursery's window. Overwhelmed by the continuity of past, present, and future, he whispered, "Hello, my little Geeta."
Gloria was healthy in all respects, their pediatrician said, except for her small size and a slight heart murmur. Nothing to worry about. Just something to keep an eye on.
* * *
The first few weeks a baby comes home are always a jumble of heaven and hell, but this hell had a special fury. Day, night, fed, hungry, Gloria was cranky beyond all imagining, kicking her legs, flailing her arms, and turning bright red as she screamed. It was an insistent cry, a despondent cry, inconsolable and filled with misery. Eating led to violent vomiting, and tiny Gloria lost weight.
Terrible colic, the doctors said. Be patient. She'll outgrow it.
There was only one bedroom in their tiny Connecticut apartment, and the flowered curtains drawn around the bassinet in the corner did nothing to block out the noise. So in the dead of night, one of them paced the floors, bouncing Gloria, trying to quiet the bawling so the other parent could steal enough sleep to function the next day. Howard's work was one of the most important things in the world to him, and sleep deprivation certainly wasn't helping him do his best.
Howard and Sylvia were engaged in 1953, the year that James Watson and Francis Crick announced their discovery of DNA, the chemical code dictating life. Howard was the sort of person who could work himself into fits of passion over biochemistry and its infinite possibilities; he stood on the cutting edge of a revolution that would transform humanity's understanding of the living world, knowledge that would literally unlock the secrets of life, and he knew it. His excitement was infectious as he leaned forward with wide eyes, explaining his research-how tiny traces of metals allow cells to transfer electrons and create the energy that powers existence, how the tiny freshwater hydra might someday help us understand normal and abnormal embryonic development.
Now it was hydra by day, screaming by night. Sometimes, Howard would blast classical music to try to drown it out. Other times, he tied strong twine from Gloria's carriage to his rocking chair, so he could at least sit down and rock her at the same time. When that wasn't enough, he headed to the car and took long drives into the countryside to lull her to sleep. Stopping for red lights and stop signs would only awaken her; so he and Sylvia held their breath and scanned the intersections as their car breezed through.
The walls of the tiny apartment pressed in. Was it only a year ago that they were in Baltimore and Boston, attending plays and concerts? Was it only two years ago that Howard had quoted, from memory, the writings of seventeenth-century scientist and philosopher Blaise Pascal? "Man is but a reed, the most feeble thing in nature, but he is a thinking reed." All our dignity, then, consists in thought. Let us endeavor then, to think well; this is the principle of morality.
Thinking well had seemed so terribly important, but now it was hard to think at all. Yet they came from steely stock, and they tried to remember that as their eyes burned from lack of sleep. Certainly this was no harder than what their parents and grandparents had endured, fleeing pogroms and poverty in eastern Europe and journeying across the Atlantic in search of a better life in America. No sacrifice was too great for the next generation, their parents had taught them. And there was no greater nachas-happiness, reward-than the cry of a child.
How could they complain about one tiny, cranky baby?
Gloria's weight loss continued. The doctors had no idea why. Her features also became more pronounced: Her almond eyes were set in lids so puffy that she looked, from a distance, as exhausted as her parents. Her upturned nose was so pronounced she resembled a little elf. She looked nothing like Sylvia or Howard, or anyone in either family, that anyone could recall.
Gloria kept missing milestones. At two months, most babies can sleep for five or six hours at a stretch. Gloria still awoke, screaming, every two hours. At five months, most babies have doubled their birth weight. Gloria had gained only a couple of pounds. At six months, most babies can sit up by themselves. Gloria was weak, and still had to be propped up. By seven or eight months, most babies are babbling in elaborate invented languages. Gloria made just a few sounds.
Perhaps it was a result of Gloria's early eating difficulties. Now that Gloria was on soy formula and the colic wasn't so bad, maybe Gloria would sleep better, and grow.
Howard never said anything to the contrary. But every time he looked at his daughter, he knew something was wrong. And he felt it was their fault. What mistake had they made? Was it the way the doctor induced labor and broke the amniotic sac, at least one month early? Was it the forceps he used to pull Gloria from the birth canal? The nothing-to-worry-about heart murmur? What could have made their baby turn out this way? What?
The road between their apartment in Stamford and the research lab in Greenwich was wild, green, and winding, studded with small shimmering ponds that reflected the pale winter sky. This drive was one of Howard's few chances to be alone with his emotions and to be brutally honest with himself. He would pull off the road, park the 1953 Plymouth beside one of the ponds, and sob. He was a biologist, damn it. He was supposed to understand. And he understood nothing. He blamed himself and his ignorance of the human embryo for what had happened to Gloria. Somehow he could have, should have, prevented it. Now their baby would suffer, they would suffer, and nothing would ever again be the way it used to be.
Howard retreated into his research, spending more and more time at the lab with his hydras. When he was home, he'd feed Gloria, or rock her, but he couldn't bring himself to help Sylvia with the Sisyphean chores of changing diapers and washing them by hand. It made him nauseated.
Gloria did not take her first steps at age one, as most babies do, and was still sleeping only two or three hours at a stretch. But something delightful was beginning to emerge in her that made the burden easier to bear: she loved to be cuddled and was forever crawling into Howard's or Sylvia's lap, anxious for a reading of The Cat in the Hat or Mother Goose Rhymes. She could listen to The Owl and the Pussycat and "Ba Ba Black Sheep" over and over again-rhythm and rhyme delighted her. She was spellbound by anything that spun-records, tops, clothes in a dryer-and would watch them, frozen with fascination. She was also turning into a charming socialite: when the Lenhoffs had visitors-which was more and more often now-Gloria would crawl fearlessly into the strangers' laps and study the minutiae of their faces, as if the eyebrows and the lips and the chin were the most fascinating and unusual things that ever existed. In the grocery store, Gloria shouted greetings and threw her little arms out to hug the cashier and strangers in the checkout line. Her hair was growing into moppy curls, her smile was punctuated with adorable dimples, and she giggled with delight whenever people paid her any attention. She was, in short, becoming irresistible.
She was also starting to show an acute sensitivity to sound. When Howard and Sylvia played their records-classical and blues LPs, mail ordered from Macy's and Sam Goody for a dollar each-Gloria grew excited and focused all at once, pulling herself up in her crib, holding onto the railings, and bouncing up and down on her stiff little feet, keeping time to the beat. She grimaced when she heard particularly loud cracks of thunder, exploding firecrackers, or screaming police sirens; when balloons burst, she wailed. They worked with this sensitivity, buying her toys that made pretty noises-bells, rattles, little xylophones-and began to realize they could use it to help Gloria learn. With Gloria on the floor at one end of the living room, Sylvia would sit on the floor at the other end, jingle-jangling her keys. The bright metallic ringing proved irresistible to Gloria, who finally perched on her tippy-toes and propelled herself forward to get at them. Success! It was an odd walk, an awkward walk, as Gloria bounced on the balls of her feet and never used her heels; but it was a walk nonetheless. At eighteen months old, Gloria had finally taken her first steps.
They were visiting family in Baltimore when it came time for Gloria's regular checkup. Sylvia made an appointment with the longtime family physician, the one who had attended to Sylvia's own colds and cuts as a child. She watched as the doctor listened to Gloria's heart, peered into her ears and eyes, manipulated her stiff little limbs. In addition to the heart murmur and funny gait, it turned out that Gloria had a partially "frozen" joint in the elbow of her right arm. The doctor measured her, weighed her, considered her quietly. Finally, he said: "She'll never go to Goucher."
Goucher College was Sylvia's alma mater, before she pursued graduate studies at Harvard. The doctor didn't know exactly what was wrong with Gloria. But something was clearly wrong. Sylvia quickly thanked him, bundled Gloria up, and never went back to him again.
The problem was, no one knew exactly what was wrong with Gloria. There was a long list of symptoms-heart murmur, frozen elbow, failure to grow and thrive, delays walking and talking-but never a definitive cause. Howard and Sylvia wanted more children, but they worried. What if it was genetic? What if they had another handicapped baby? Could they live with themselves? Was it selfish to want to try? They confessed their fears to Gloria's regular pediatrician, and he comforted them with statistics: The chances of having two handicapped children in the same family are exceedingly slim, he said. It might actually help Gloria to have a little brother or sister who was developing at a regular pace, and it would do Howard and Sylvia a world of good. He urged them to have another child soon.
The family moved to Washington, DC, in the summer of 1956. Howard, now an officer in the air force, became chief of the biochemistry section of the new Armed Forces Institute of Pathology. There, he delved deeper into his studies on the tentacle-headed hydra, a microscopic organism with a fascinating ability to repair injuries by regeneration. Slice a hydra's body into pieces, and each piece will grow into a new, complete hydra. How did they do that? And what could Howard learn about their behavior and biochemistry that might be applied to understanding humans?
The Institute of Pathology was on the Walter Reed Army Hospital base, and one of the perks was access to some of the best doctors in the nation's capital. A team of thirteen physicians examined Gloria and tried to determine, once and for all, what was wrong. A dizzying number of tests stretched over four days-karyotype chromosomal analysis, blood tests examining major ions and proteins, motor tests, body measurements, psychological tests, x-rays. After nearly a week of conferences and cross-checking, the doctors reached a sobering conclusion: Gloria had suffered brain damage due to a temporary lack of oxygen during the birth process. Take her home and love her, they said. There's nothing you can do differently now.
Brain damage. Lack of oxygen. During birth.
Friends tried to console them. "At least you didn't have a boy," one said, as if having a disabled daughter was somehow more merciful than having a disabled son. Howard choked on bitterness for doctors in general and for the doctor who delivered Gloria in particular; but Sylvia was pregnant again, and her deepest concern at the moment was for the baby she carried. So far, it seemed incomprehensibly easy: no nausea, no bleeding gums, no edema, none of the suffering she endured carrying Gloria. Statistically speaking, this should be a perfectly healthy baby. But was it?
(Continues...)
Excerpted from the {strangest} song by Teri Sforza Howard Lenhoff Sylvia Lenhoff Copyright © 2006 by Teri Sforza with Howard and Sylvia Lenhoff. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
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