The Boy Who Loved Too Much

by Jennifer Latson

  “It’s been OK so far, luckily. But it’s progressive; it could change at any time,” Gayle said. “And he has stomach problems that are almost always an issue. You have to remember that sometimes he might not feel that good.”

  Gayle moved on to the pragmatic questions. Some focused on Eli’s daily routine: Could he shower by himself? Brush his teeth? Get ready for bed?

  “He does need a little help,” Gayle said. “His dexterity isn’t as good as yours. But he can manage for the most part.”

  A few of the boys in the class had asked whether Eli could play sports. Gayle winced; she had assumed they already knew how active he was in special-needs sports leagues. He had been playing soccer since he started grade school and baseball for the last few years. She explained that sports were an important part of his life. Lately he’d even expressed an interest in basketball, she said, although he’d never actually played it.

  One boy raised his hand and announced that Eli had, in fact, played basketball. At the school’s recent field day, he said, a group of boys had been shooting hoops when Eli saw them and asked if he could play, too. He seemed disappointed about being left out. So the boys paused their game and created a new team that Eli could join.

  “He did good throwing the ball,” the boy said. He seemed eager to show Gayle that he and his friends accepted Eli and tried to make him feel welcome. He added that a girl from Eli’s class had helped him join the egg race later that day when she saw him on the sidelines and realized that he didn’t have the coordination to carry an egg on a spoon. She took it upon herself to bend the rules, calling him over and telling the team, “When it’s Eli’s turn, he’s gonna hold the egg in his hands.”

  Several other students spoke up, recalling Eli’s delight at being included. One boy said he’d never seen Eli without a smile. Another complimented Eli’s singing voice, telling Gayle about a particularly operatic rendition of Lady Gaga’s “Poker Face,” which Eli had performed in the lunchroom one day.

  “How would you describe Eli in one word?” Kathy prompted the class.

  “Happy,” said one boy. “Enthusiastic,” said another. “Never in a bad mood.”

  Gayle was touched.

  Some of their questions were probing, but they all seemed to reflect an earnest interest in why Eli was the way he was.

  One boy asked, “Why does he rock so much?”

  “I’m not really sure,” Gayle said. “I think it’s just to keep himself busy.”

  “Like when he chops the desk all the time?”

  “Oh, you guys remember his chopping phase! Yeah, we’ve moved on to other things. Lately it’s been flicking paper. It’s always something: tapping, rocking, singing. His body is always busy.”

  Another student asked: “What will he be like as an adult? Is he going to need help all the time?”

  Gayle was prepared for this one. Welcome to what keeps me up at night, she’d thought when she first read it on the list of questions. But she found that answering it wasn’t as hard as she had feared. She responded more as an educator than as a mother.

  “Yes, he’ll need someone living with him all the time,” she said. The students were quiet now, their faces somber. They’re genuinely concerned, Gayle realized. They’re worried about his future, too.

  “You guys are probably already thinking about learning to drive, or where you’re going to go to college, but he’s not going to have those things in his life,” she explained. “He’s going to have a very good, rewarding life, but it’s just going to be different.”

  Because the focus of their textbook was on genetic engineering and the possibility that in the future, disorders like Williams would be eradicated, a number of students had asked the same ethical question: “If you could have made Eli different, would you have?”

  Gayle answered honestly. “No one wants to have a child who’s going to have difficulties. If I could change it to make his life easier, I would.”

  One girl, a relatively recent transfer into the school district and one of its few black students, raised her hand high.

  “I wouldn’t change anything about him,” she said emphatically. “He’s so friendly. He’s the first person who ever said hi to me when I came to this school.”

  * * *

  GAYLE WAS IMPRESSED BY HOW Direct and thoughtful the questions were. Some focused on her own experience. One student asked, “Is it hard if he does something inappropriate in public? Do you get frustrated?”

  “I do,” she said. “Just like your parents get frustrated with you sometimes. He doesn’t always listen to me.”

  “Are people nice to you and Eli?” someone else asked.

  “I very rarely run into someone who’s directly rude to us, but I’ve gotten some stares,” she said. “Almost everyone has been receptive of us.”

  Other questioners expected her to have done some soul-searching and to bare the results. For example, “How has this experience changed you as a parent?”

  “I had to change my idea about what it would be to be a parent,” she said. “It was an adjustment.” She left it at that, without elaborating. After all, she had no idea what kind of parent she would have been to a different child. Her idea of parenting would probably have adjusted in any case. Before Eli was born, she’d never imagined the terrifying risks her child would face or the sacrifices she’d have to make. She hadn’t foreseen the daily struggles and frustrations and heartbreak. But neither had the parents of any child, with or without special needs. She didn’t mention that she’d had to let go of hopes for her son that parents of normal children could take for granted. She wanted to be honest with the students, but she didn’t want to overwhelm them. And while she didn’t want them to make fun of Eli, she didn’t want them to pity him, either.

  Above all, though, Gayle was amazed by the students’ compassion. Several kids hung around after the end of each class to talk to her privately, telling her how much they cared about Eli and how moved they were by her presentation. One girl told her, “If I found out I had a kid with Williams, I would be really happy, because Eli is the best kid in the world.”

  Gayle recognized one of the girls who lingered after her presentation: Julia, who had been in Eli’s class since kindergarten. When Eli was younger, Julia had been a great help to him. She’d stayed by his side at the birthday parties he’d been invited to up until third or fourth grade. At bowling parties, she helped him bowl; at a laser-tag party, she helped him shoot, although he found the experience so overstimulating, he didn’t go back for a second round. Eventually he stopped going to parties, and Julia no longer played a supporting role in his social activities. But she never forgot him: in fifth grade, he came home with a Yankees cap Julia had given him. Their teacher told Gayle that Julia had gone to a game at Yankee Stadium and asked her grandmother to buy it for Eli, knowing that he was a fan. Gayle had been so moved by the gesture, and the affection behind it, that she’d written Julia a note.

  “Thank you for always looking out for Eli and being such a good friend to him. Your parents should be very proud of you,” she wrote. “There should be more kids like you in the world.”

  Now Julia approached Gayle and said, with unexpected seriousness for a thirteen-year-old, “I know it must be hard for you, but I just think Eli is a gift.”

  Gayle started to tear up, but Julia looked at her stoically.

  “I’m not sure if you remember me . . .” she began.

  “You gave him that hat,” Gayle said. “I still remember that.”

  “Yes!” Julia said. “I still have your thank-you card.”

  When the bell rang, Gayle watched Julia disappear into the throng of students pushing their way through the halls and thought about how she’d once seen her: as a rarity among the mean girls and bullying boys who must have surrounded Eli at school. Now she realized that there were others like Julia, who cared about Eli and wanted to help him.

  Gayle had been convinced that she needed to protect Eli from his peers,
and all the while they had been nurturing him in their own ways. She had worried that, without the sophistication required to climb the middle school social ladder, he’d be trampled underfoot by the popular crowd. But his sincere warmth, antithetical as it was to coolness, had upended the normal rules of popularity, making him a nearly universally beloved figure in his class. The power dynamics Gayle had envisioned had been inverted: instead of seeing his openness as a weakness to be exploited, his classmates had been drawn to him and driven to defend him from the same threats Gayle herself feared. She’d underestimated the power of his compassion to bring out the compassion in others.

  Here I am thinking these are rotten kids, and they’re so supportive—so kind, she thought when her long day of lecturing had ended. She’d been afraid that Eli would never make a friend. But he’d had friends all along.

  Twenty-Three

  Graduation

  In the darkened middle school auditorium, Gayle sat waiting for the principal to say Eli’s name and clapping politely as the eighth graders at the beginning of the alphabet marched across the stage to accept their diplomas. She clutched her cell phone, poised to record a video as soon as Eli appeared. She could already feel the tears forming in her eyes and wasn’t quite sure whether they were tears of joy, sorrow, or relief. She’d known she would feel emotional at Eli’s eighth-grade graduation—proud, mostly—but she didn’t know it would be so overwhelming.

  A memory drifted back from the early days after Eli’s diagnosis, when tears had formed perpetually. A friend of Gayle’s, a metaphysics enthusiast, had returned from a retreat in the Himalayas and given her a book called Journey of Souls: Case Studies of Life Between Lives, by Michael Newton. The book describes a theory of reincarnation in which recycled souls wait in a sort of celestial depository until they can be reborn to the right parents to guide them through their next life. Although skeptical of New Agey nonsense, Gayle was nonetheless intrigued and strangely comforted by the idea. The image of Eli’s soul floating in the soul bank until she came along stuck with her, although at the time she couldn’t fathom why the cosmos would have entrusted a “bigmouthed bitch” like her with such a delicate soul—or such an enormous responsibility.

  The last fourteen years—Eli’s life so far—flashed through her mind, and she came to a realization that shocked her: she had done pretty well. Eli hadn’t been abused, taken advantage of, or seriously bullied. She’d kept him safe. He was happy.

  Maybe, she thought, I was chosen because I’m a bigmouthed bitch He can’t protect himself, but I can. I’m not afraid to fight to get him what he needs. If he had gone to someone else, someone who couldn’t speak her mind, who knows what would have happened to him? Someone out there knew I could handle the responsibility.

  For the first time in years, she felt a palpable sense of relief: We’ve come this far. Who knows what high school will be like? But I think we can do it.

  * * *

  IT HAD BEEN A RELIEF, too, to finish writing the will that had stymied her for so long. Not long before Eli’s graduation, Gayle had finally worked up the nerve to ask her cousins Emily and Jake whether they’d consider being Eli’s guardians. The conversation she had dreaded was, in the end, surprisingly easy. Emily even seemed indignant that it had taken Gayle so long to ask.

  “Well, I’m asking you to take a big step out of your lives. It’s a big burden,” Gayle replied.

  “But I always expected to take care of him someday,” Emily said. “He’s like a brother to me.”

  “I just don’t want you to think it’ll be easy.”

  “I don’t know why you get like this,” Emily said, shaking her head. “Of course it’s not going to be easy. It’ll have to be arranged. But, between Jake and me, we’ll work it out. Don’t even think about it anymore.”

  Of course, Gayle couldn’t stop thinking about it. But Emily’s assurances eased her mind greatly. And signing her name on a will that, at least in writing, guaranteed Eli a safe and happy future brought her a feeling of closure. She’d finally gotten the results of her own DNA test back; luckily, she did not have the genetic predisposition for breast cancer. Still, she knew she wouldn’t live forever.

  Every time Gayle replayed the conversation in her mind, her heart swelled with gratitude. Emily’s words were sincere. She would look after Eli when the time came, no matter what new challenges were in store.

  * * *

  GAYLE COULD NEVER BE SURE how much Eli picked up on her fears, but he clearly realized that he was on the verge of an important transition: from middle school to high school, from childhood to adolescence and, eventually, to adulthood. As the focus of his schoolwork shifted from academics to life skills, he’d grown more preoccupied with the notion of independence and began distancing himself more from his mother.

  On Mother’s Day, at a restaurant where the family had gathered to celebrate, Eli had had a meltdown when he was forbidden to play with the electric tea light on the table. When he grabbed it anyway, Gayle told him he had lost the privilege of playing with sticky notes, his latest obsession (he liked to cut them into strips and flick them, pretending they were flames).

  Eli fumed in the backseat of the car on the way home. Finding a stray sticky note stuck to his seat belt, he ripped it to shreds.

  “You’re ruining my life!” he yelled, then mumbled, “We can’t be together anymore.”

  “What did you say?” asked Gayle, who genuinely hadn’t heard him.

  A panicked look flashed across his face, as if he suddenly feared his wish might come true. His tone became conciliatory as he revised his statement.

  “I said I want to be together,” he said, nodding earnestly.

  “We are together,” Gayle said. “We always will be.”

  “I want that.”

  “Just because I’m mad right now doesn’t mean we’ll be separated. I’ll always want you with me.”

  “OK,” he said. He let the shreds of sticky note drift from his hand and settled back into his seat.

  * * *

  ALPHABETICALLY, ELI FOLLOWED A GIRL who stood out among the eighth-grade class. Her hair had changed color several times during the school year. The last time Gayle had seen her it was hot pink. Today it was teal.

  Before the ceremony, Eli’s teacher had forewarned Gayle, so she could be ready with her camera, “When you see the teal hair, he’s next.”

  Now the blue-green blur from the edge of her vision snapped Gayle out of her daydream. The girl with the teal hair appeared onstage. Gayle didn’t know the girl or anything about her, but in some ways she resembled who Gayle had been at her age: nonconforming, rebellious, different.

  Gayle’s thoughts turned to Mimi, sitting next to her in the dark. Gayle could remember a time when she and her mother had seemed like polar opposites. These days they had more in common than she ever would have imagined in her youth; for one thing, they were both highly protective of their only child. But Mimi had never tried to force Gayle into the mold of what she imagined the perfect child to be. She had tolerated the teased hair and the punk-rock attitude. She’d never stopped Gayle from being her own person.

  There were still lessons to be learned from her mom, Gayle realized.

  The girl with the teal hair disappeared from the stage. Then Eli appeared.

  He wore a button-down shirt and tie that Gayle had picked out, along with tailored pants Mimi had bought him for the occasion. It was so different from his customary outfit—he hardly ever even tucked in his shirt—that when he looked in the mirror before the ceremony, he was startled by his own reflection.

  “I look like a businessman!” he said. He had lost weight over the past year, partly thanks to a change in medications and partly to Gayle’s efforts to improve his diet and make him more active. His thinner face was more angular, more adult. In his formal wear, he looked handsome and self-possessed.

  As soon as he stepped onto the stage, the crowd burst into applause. It was more than the polite smattering of cl
aps they’d given everyone else: this was a roar. Then they were on their feet. Gayle heard Eli’s name shouted from everywhere around her. She was so stunned that she forgot to cheer for him herself. He couldn’t have heard her over the din anyway.

  But he heard the crowd. His smile widened. He threw both hands in the air, the way he’d seen Pavarotti do for standing ovations, except that he kept walking toward the principal, hands raised all the way. He dropped them to accept his diploma, then yelped and threw his arms up again as he walked down from the stage. The applause took a while to subside. When it did, Gayle realized she had been so overcome by the moment that she had forgotten to record it.

  Epilogue

  High School

  The lunch tables had been cleared away. The cafeteria was empty except for the school janitor, Mike, and a piece of industrial cleaning equipment Eli had coveted for years: the Tennant 5400. Eli hustled past Mike and said a hasty hello, but never took his eyes off the floor scrubber. It was already on and waiting for him in the middle of the room.

  Given a choice of vocational training as part of his ninth-grade curriculum, Eli had begged for the chance to do janitorial work. Mike said he’d be happy for the help. So every Friday for the past few months, Eli had gotten to scrub the floor after lunch.

  Now, on a Friday afternoon in November, he ran his fingers over the Tennant 5400’s dials and knobs. He savored the hum of the machine for a moment. Then he wrapped his hands around the handles, the way he’d always pretended to do while watching YouTube videos of the scrubber in action, and pushed forward.

  It was harder in real life than it had looked in the videos. He flung his upper body forward, bending nearly in half with the effort of pushing, even though the motor did much of the work. This was more strenuous than any exercise he had done in gym class, and required much more concentration. His brow creased from the exertion, but he was smiling. He maneuvered in roughly straight lines; Mike put a hand on the scrubber to help him turn when he got to the end of a row.