The Boy Who Loved Too Much Read online

  Road trips were a source of great excitement for Eli, since they meant a new cast of characters and new social opportunities he wouldn’t find at home. Home was a town house in a small Connecticut apartment complex where Eli and his mother lived by themselves. Eli’s father hadn’t been around for years.

  From his kitchen window Eli often watched other boys his age playing in the parking lot. From the French doors overlooking his back patio, he caught glimpses of them shooting basketballs through the hoop behind the subdivision’s communal grass patch. But he’d never joined them. Even if he’d been invited, Gayle wouldn’t have let him go.

  Road trips, however, meant stopping at diners and hotels—places where you could meet new people and see unfamiliar vacuum cleaners and overhead fans, to Eli’s great delight. And this had been a nice, long summer road trip: two days north to Michigan and now two days back. Eli squirmed giddily in anticipation of all the adventure still in store.

  “We’ll be there soon, Eli,” Gayle said. Her voice was worried, slightly exasperated. She asked him to sing a little more quietly.

  * * *

  IT WAS NEARLY MIDNIGHT, AND Eli was dozing, when Gayle finally found a motel with a vacancy: a low white-brick building near an oil refinery in Clearfield, Pennsylvania. But as soon as she pulled into the parking lot, she was tempted to turn around and keep driving. The warm air drifting through her open window carried the acrid smell of diesel fuel on a cloud of cigarette smoke. The parking lot was filled with work trucks around which men stood in groups dimly lit by streetlights. Tractor-trailers lined the edges of the parking lot, bordering the motel like a menacing metal hedgerow.

  Gayle considered getting back on the highway. If she drove all night, they could be home by morning. But she knew she was too tired. They were stuck here at the Clearfield Budget Inn.

  Eli woke up when the car rolled to a stop. He surveyed the landscape enthusiastically, oblivious to the seediness of the place.

  “I’ve never been here in a long time!” he exclaimed, clapping his hands together.

  Gayle stepped out of the car and into the July heat, and opened the back door to let him out. She could feel the eyes of the men on her, the only woman in their midst, and on Eli, who was now rocking back and forth on his heels with excitement. Both Gayle and Eli were rumpled from hours in the car. Gayle, a youthful forty-one-year-old, wore a purple camisole and capri-length cargo pants that revealed some of her tattoos. On her back, feathery wings spread outward from her spine. Her left shin was covered with a series of colorful images: on the back, a dragonfly; on the left, flaming dice; on the right, a serpent coiled around a sword; and on the front, a red heart with a banner that said “Eli.”

  Her long black hair, usually wavy, had gone limp in the muggy heat. She had pulled it up into a clip, revealing the discs that had stretched dime-size holes in her earlobes.

  Eli wore a black T-shirt and the baggy denim shorts that Gayle had bought at Kohl’s just before the road trip, hoping these wouldn’t split at the seams like his last pair. She described her son as “husky,” but it was his pear shape that made him hard to shop for. Boys’ clothes weren’t designed with this shape in mind.

  She ran a protective hand through Eli’s dark curls. His features were those of a much younger child: chubby cheeks, an upturned nose, and a smile so wide it made his eyes crinkle. They were crinkling now. His face was bright with joy, and he tugged at Gayle’s arm, pulling her toward the light, the trucks, the men. She jerked him forcefully in the other direction.

  In the sweltering front office, the motel’s owner, an Indian man with thinning white hair, slid open a thick glass window—Bulletproof, Gayle thought. He looked as tired as Gayle felt. She rummaged through her purse to find her wallet and handed him her credit card. Eli, meanwhile, bounced up from behind her, smiling broadly.

  “I’m Eli! What’s your name?” he said, extending a hand to the motel owner. The counter was higher than Eli’s head, but he stood on his tiptoes and strained to reach. The man gave him a quizzical look. Without answering, he reached through the window and shook Eli’s hand.

  Turning to Gayle, the motel owner nodded toward the parking lot. “Don’t worry about those guys,” he said. “They’re here for the summer, working construction. They just like to relax out there after work.”

  Only slightly reassured, Gayle took the room key.

  “He likes me,” Eli declared as they left the office, pointing his thumb toward his own chest.

  “I’m sure he does,” Gayle agreed blankly. She was already scanning the row of doors for the number on her key. She slung Eli’s backpack over her shoulder, rolling her suitcase across the uneven pavement with one hand and holding Eli’s hand with the other.

  Eli peered at the faces of the men in the parking lot, hopeful that someone would return his gaze, but they looked away when he caught their eyes. One man lit a cigarette; another stubbed one out on the pavement. One man mumbled something too quietly for Gayle to hear. The others laughed.

  Apart from the rest of the group, one man sat alone on the sidewalk, his elbows propped on bent knees, his head drooping heavily in his hands. His eyes were closed. Gayle noticed his sinewy arms, his muddy work boots. Maybe he was just tired from a long day, but Gayle’s instincts told her he was more likely drunk or high. She looked for a way around him, but he was on the walkway just in front of her room. There was no other way to go.

  She whispered to Eli through clenched teeth, “Do. Not. Say. Anything. To. Him.”

  “Why?” Eli replied in an ordinary voice. They were ten feet from the man, and closing in.

  Gayle raised a finger to her lips. “Because. He’s sleeping.”

  Eli’s eyes never left the stranger. When they were less than an arm’s length from the man, Eli shouted, “Are you sleeping?”

  The man raised his head and gave him a dark, bleary look but didn’t speak. Eli grinned at him. The man dropped his head again. Gayle pulled Eli past, fumbled to unlock the door to their room, and dragged Eli inside. She shut the door hard behind her.

  The motel room was outdated—forest-green carpeting, purple-and-green-swirled curtains and a pink bedspread—but it looked clean, at least. Gayle checked the mattress ticking for bedbug shells but found none. There was still a faint smell of smoke inside, which grew stronger when she turned on the air conditioner. She could hear the men’s voices outside, even over the rattling of the AC, and wondered if she’d be able to fall asleep here. Eli, meanwhile, pulled off his Velcro shoes and his shorts, dove under the polyester bedspread, and was snoring before the lights went out.

  The next morning Gayle spent close to an hour looking for the room key, which she had somehow lost. She dumped out the contents of her suitcase, her purse, and Eli’s backpack. Eli chattered happily while she searched, asking questions she only half answered.

  “What are we going to have for breakfast, Mom?”

  “I don’t know. We’ll see.”

  “We can go to a diner?”

  “Maybe. I don’t know what’s around here.”

  “I think there’s a diner!”

  “Oh, you do?” She couldn’t help but smile at his optimism. He stood at her shoulder, looking up at her expectantly. She set down the backpack she had been rifling through and gave him a hug before continuing her search.

  When she kneeled to search under the bed, Eli sprawled atop the shiny pink bedspread and watched her. When she moved into the bathroom, he jumped up and followed her. Gayle crouched to look behind the toilet.

  “You can draw a picture of a truck?” Eli asked from the doorway, tilting his head sideways to see her face.

  “Not now, Eli. But maybe later.” She opened the cupboard below the sink and looked beneath the extra rolls of toilet paper. She couldn’t really imagine how the key could have gotten under a roll of toilet paper, but she was out of ideas.

  “But you can draw it for me?”

  “Yes, OK. But later.”

  She sque
ezed past him, back into the bedroom. She pulled the dresser away from the wall in case the key had slipped behind it. It hadn’t. Eli flopped back down on the bed. He cupped his chin in his hand and sighed, growing bored. Gayle rechecked every place she had already looked. The key was nowhere.

  Finally she instructed Eli to wait in the room while she flagged down the motel owner. He was also apparently the motel’s one-man housekeeping crew: she saw him a few doors down with a cart full of cleaning supplies. She sheepishly confessed to losing the key.

  “I have it,” he said. “You left it in the door last night.”

  Gayle’s mind raced with retroactive terror. As if they weren’t vulnerable enough already, she’d made it even easier for danger to creep in. She pictured a lineup of the men who must have passed their door while they slept, and the key turn that would have brought them inside. Not only had the door been unlocked, it had been advertised as such. The dangling key chain might as well have been a neon welcome sign.

  Gayle shuddered. This was, after all, the central struggle of her life: trying to shelter her son from the world. Eli himself was perpetually unlocked, open, and vulnerable. He carried a welcome sign wherever he went. Gayle was the only barrier between him and everything that lurked outside the door.

  She dashed back to the motel room, which she had left unlocked this time by necessity. Eli’s face was pressed to the window. It lit up when he saw her and, behind her, the motel owner. He waved at both of them ecstatically, as if he were being rescued from a desert island and it had been years since he’d seen another human being.

  Two

  Diagnosis

  On a brisk mid-March morning in 2000, Gayle hurried to her cubicle at work. She was in a rush to boot up her computer, to search the internet for a medical term she had just heard for the first time.

  “Williams syndrome” meant nothing to her—nothing specific—and yet something about it filled her with dread. In the short drive from Eli’s day care center to the office building where she’d worked an administrative job since she was just out of high school, the dread had risen to a level of near panic. Her hands shook as she typed the words into a search engine. She clicked on the first website she saw, an online medical dictionary, and scanned the screen quickly. She read as much as she could before her eyes filled with tears and blurred the words. Then she ducked her head over her trash can and threw up.

  * * *

  SHE KNEW SOMETHING WAS WRONG with her baby. She’d known that for a while. Eli cried often, as if in pain. He didn’t sleep. He wasn’t gaining weight.

  Gayle knew this wasn’t just normal baby stuff because her cousin and her best friend had both had babies around the same time she had Eli, and theirs were different. They ate more, slept more, and moved more. They were already taking their first steps and saying their first words. At thirteen months, Eli wasn’t walking or speaking. He wasn’t even crawling.

  Eli’s pediatrician, Dr. Hanover, agreed that there was cause for concern. He’d recently given Eli one of the bleakest labels in the medical book: “failure to thrive.” Eli was only in the fifth percentile on growth charts. Tiny.

  Eli’s health problems, seemingly unrelated to each other, were piling up. Dr. Hanover had referred him to a gastroenterologist, who diagnosed Eli with reflux and prescribed him a baby dose of Pepcid. The pediatrician also diagnosed a slight heart murmur. He noted that one of Eli’s pupils dilated much more than the other in light—something called Horner’s syndrome. He sent Eli to an ear, nose, and throat specialist to see about his frequent ear infections and hypersensitivity to sound.

  By Eli’s one-year checkup, it was also obvious that his motor skills were not developing as they should. Dr. Hanover put in another call, and on March 1 two women visited Gayle’s home to evaluate her son.

  The pair worked for Connecticut’s Birth to Three program, which provides services for children with developmental delays. They played with Eli for an hour in the living room of the family’s split-level ranch while Gayle and her husband, Alan, watched nervously. During their visit, the women recorded the following assessments:

  “In back lying, Eli easily brings his feet to his hands. He rolls to his tummy and returns with ease. He is not yet able to transition into sitting by himself. . . . Eli’s gross motor skills appear to be at approximately an eight-month level. . . .

  “Eli is an alert baby; he enjoyed interacting with the evaluators during the session. He can alternate his gaze between two objects and enjoys staring at his hands. . . . Eli looked for a ring that was partially hidden under a washcloth, indicating the emerging understanding of object permanence. Eli’s skills appear to be at approximately an eight-month level in the cognitive domain.”

  It was in the “personal-social domain” that the evaluators felt Eli performed best. They judged his social skills to be roughly on par with his age, and wrote: “Eli was cheerful for most of the evaluation. He smiled readily at the unfamiliar evaluators and enjoyed engagement and physical handling for nearly a full hour. . . . Mom reports that Eli is a ‘cuddly’ baby who especially enjoys singing.”

  The evaluators left the session feeling perplexed. They agreed that the baby was engaging, alert, and attentive in a way that seemed to belie an intellectual disability.

  But they also agreed that something was very wrong with him. They had no idea what it was. They deemed him eligible for state-funded early-intervention services and left it at that.

  In their final report, they wrote: “Eli is a delightful young boy who is very sociable. It is difficult to suggest an explanation to account for the overall delays exhibited during this evaluation. Eli’s interest in his environment is an asset that will assist him in acquiring further advances in developmental skills.”

  They called Gayle a few days later to tell her that a physical therapist would begin visiting Eli at his day care center to help him learn to walk. Gayle was grateful. She hoped her son just needed a little extra help to catch up. Maybe once his reflux is under control and he puts on some weight, she thought, he can bring those motor skills up to speed. Then everything will be back on track.

  * * *

  BEFORE CHRISTMAS, GAYLE HAD TAKEN a group photo of Eli and his day care classmates. She’d put a print of the beaming baby faces in each child’s cubby as a gift for their parents. She thought of the photo again one morning, a week or so after the Birth to Three evaluation, when she told an aide at Eli’s day care to expect visits from a physical therapist.

  “She’ll be coming in to help Eli with walking,” Gayle said when she dropped Eli off before work. “Eli’s motor skills aren’t where they should be, so they hope this will help him catch up.”

  “Oh, good,” the aide said. “Has he been having health problems?”

  “Well, he has a heart murmur, but it’s mild,” Gayle said, unsure exactly how to answer. “He has pretty severe reflux. He also has a condition that makes one of his pupils dilate more than the other; it’s called Horner’s syndrome. Do you know anything about Horner’s? I think it has something to do with them using forceps when he was born, but I’m not sure.”

  “No, I don’t,” the teacher said, “but you should ask Jonathan’s mom. She’s a pediatrician.”

  The teacher nodded toward a tall woman who was squeezing her son’s puffy coat into his cubby. Gayle recognized Jonathan’s mom from the day care center’s holiday party but hadn’t known she was a doctor. She was a quiet woman who didn’t socialize much with the other mothers.

  “Oh, you’re a pediatrician?” Gayle said, and Jonathan’s mother looked up from the row of wooden cubbies. Gayle smiled at her. “Do you know anything about Horner’s syndrome?”

  The woman deliberated for a second without returning her smile. It occurred to Gayle later that she’d been contemplating whether to reveal what she had been holding back. Then she decided to let it out.

  “No,” she said slowly. “But . . . have you ever seen a geneticist?”

  “No,” Gayl
e said, taken aback. “Why would I see a geneticist?”

  The pediatrician responded slowly, as if choosing her words carefully.

  “Well, Eli has some characteristics that could be part of a certain syndrome.”

  “What do you mean?” Gayle said, trying not to sound defensive. “Characteristics? Like what?”

  “The heart murmur, the developmental delay, the wide smile,” the woman said, lifting her hand to her face and squeezing her cheeks when she said “wide smile,” although she wasn’t smiling. “They’re all signs of a certain syndrome.”

  “What syndrome?”

  “It’s called Williams syndrome.”

  The woman shifted her weight from one foot to the other, as if keeping her muscles limber for a quick retreat. From her strained tone and awkward manner, Gayle could tell that, whatever else Williams entailed, it was supremely bad news.

  “Oh,” Gayle said, feigning nonchalance. The dread was forming already, a hard knot deep in her stomach. “I guess I’ll have to ask Eli’s pediatrician about that.”

  “There’s a doctor at Yale who specializes in Williams,” Jonathan’s mom offered helpfully, giving Gayle an unfamiliar name. “You might want to contact her.”

  Gayle nodded, hoping her face didn’t betray how much she was unraveling inside. It was all she could do not to bolt from the room in search of an internet connection. She mustered all her willpower to keep herself composed.

  “Well, thanks for the information,” she said in just a slightly higher voice than normal, clutching her purse close. “I’ll check into it.”

  * * *

  ALONE IN HER CUBICLE, SHE composed herself and forced her eyes back to the screen, to the description of Williams syndrome. Caused by the deletion of twenty-six genes from one strand of chromosome 7, it manifested itself in young children as a heart murmur, sleeplessness, fussiness, sensitivity to sound, and “a highly social personality from birth.” People with Williams, the website said, tend to be extremely outgoing, friendly, and affectionate—even as babies—to relatives and strangers alike.