* * *
II. A British geneticist was given permission to use the editing tool on human embryos in 2016 as part of her research to determine which genes were active in the earliest stages of development. But she destroyed the embryos after seven days—a move that was controversial in its own right.
Fifteen
Eli Turns Thirteen
The night before his thirteenth birthday, Eli was too excited to sleep.
“What’s going to happen to me when I wake up?” he asked Gayle while she helped him wash his face and brush his teeth at the bathroom sink. “Am I going to talk like a man?”
She reminded him that his voice was already as deep as a man’s. He eyed her incredulously. He had learned in health class that boys’ voices got deeper when they became teenagers. He believed his would drop automatically the second he turned thirteen.
He tested this theory as soon as he woke up the next morning, but his voice was the same slightly nasal baritone it had been the night before. It broke into a falsetto squeal when he opened the gift Gayle gave him at breakfast: a small plastic monster called a Scary Screecher, a red-eyed, mummy-like creature that screeched when you squeezed it. Eli had been begging for it since he saw it at Walgreens weeks earlier. Now he screeched gleefully along with his new toy. Gayle endured the noise, although she silently cursed the mummy for its seemingly eternal battery life, and denied Eli’s entreaties to bring it with him to school.
For months, Gayle had been using Eli’s impending birthday as an incentive to encourage good behavior. Thirteen-year-olds don’t throw tantrums, she had often reminded him as the day approached. They don’t whine while their mother is on the phone. They don’t beg for a second dessert when they’ve already had ice cream. They don’t hug strangers or ask to go home with them and see their vacuum cleaners.
Eager to earn the title of teenager, Eli had used all his willpower to fight his impulses. But his willpower still came up short most of the time, to Gayle’s frustration. Still, Eli was starting to see himself as an adult, even if Gayle wasn’t. The numerical fact of being thirteen resonated with him more deeply than the daily evidence of his immaturity.
“I can go out with the girls now,” he declared proudly when he got home from school that afternoon.
“What do you mean?” Gayle asked, turning from the microwave, where she was reheating leftover macaroni and cheese for his snack.
“Boys and girls, going to the movies!” he explained.
“You mean a date?” Gayle asked. She paused. Then, choosing her words carefully, she said, “That’s for older teenagers. Eighteen-year-olds.” She picked the number arbitrarily, high enough to seem far in the future, low enough not to dash his hopes.
She paused again as she set the bowl of pasta down in front of him. “Why, who do you want to go on a date with?”
“With you, Mom!”
She couldn’t help laughing, but composed herself enough to say seriously, “You can’t go on a date with someone you’re related to.” She hoped he wouldn’t tell the kids at school he wanted to go on a date with his mom. Then he’d really never get a date.
Gayle had spent more time than usual over the previous few weeks ruminating on Eli’s prospects in adulthood. This was partly because of his upcoming birthday and partly because, earlier that month, she had found a lump in her breast. She’d had it biopsied and spent several worried days waiting for the results. It turned out to be a cyst, not cancer. But because one of her aunts had been diagnosed with breast cancer in her forties, the doctor told Gayle she should get tested for the gene that would predispose her to develop it herself. He drew some blood and sent it to a lab.
Now, while Eli was upstairs trying to find his shoes so they could go to Mimi’s house for dinner, a nurse called from the lab. Gayle fumbled with the living room phone, nearly dropping it before she picked it up on the second ring. “Hello?” she said breathlessly.
Eli’s coloring book was open on the coffee table. Gayle grabbed the blue crayon that Eli had been using on Cookie Monster and scribbled a few notes next to the picture. The nurse explained that she wasn’t calling with test results. She said that the genetic test the doctor had ordered was often inconclusive, and she wanted permission to do a second, more sophisticated test. It would cost Gayle $700, even after her insurance paid its share. Gayle wrote “700” in thick blue crayon, then circled the number. She told the nurse she’d think about it.
Gayle hung up and frowned at the number. From upstairs, the trail of Eli’s shoe search was made audible by his constant singing and occasional thuds as he knocked over toys and bumped into walls.
Money was tight, as always, so Gayle wasn’t enthusiastic about paying $700 to learn that there was a chance she might someday get cancer. That was an abstraction; $700 was concrete. She pondered the blue number, mentally adding it to her existing medical debt. Then she looked up again, toward the sound of singing.
I have to do this, she thought. I need to do whatever I can to make sure I’m around as long as possible for him.
* * *
TAKING CARE OF HERSELF WAS part of Gayle’s plan for the future, but she expected to do it the way she’d been doing it for years: on her own. Getting remarried wasn’t anywhere on her radar. She hadn’t even gone on a date since her divorce. As she saw it, the right person hadn’t materialized, and she didn’t have the time to go looking for him. By now she’d been alone for so long that she felt entrenched in her aloneness, too set in her ways to make room for someone else.
She knew there were drawbacks to this way of thinking. When she considered the long-term implications, though, she thought less about her own potential loneliness than about what it would mean for Eli. For one thing, it meant there was zero chance that Eli would ever have a brother or sister, step- or otherwise.
She was keenly aware that Eli would likely outlive her. She’d planned for that, too, as well as she could. She had begun drafting a will years earlier, but had never been able to finish it. There wasn’t much to leave behind—that wasn’t the problem. Everything she had would go to Eli, of course. She’d even opened a special-needs trust for him when he was a toddler (and made one deposit of $2,000, but hadn’t been able to afford another one since). What was stumping her was the question of who to name as Eli’s guardian when she was gone.
With no other children and no siblings of her own, she didn’t have an obvious candidate. Her youngest cousins, Jake and his sister Emily, were the most logical choices, both because they adored Eli and because they were in their twenties, so presumably they’d be around longer than Gayle. Both were named as trustees of Eli’s trust fund, after Mimi.
Gayle considered Jake and Emily the closest thing she had to siblings, even though they were so much younger. She knew they’d agree if she asked them to take guardianship of Eli. But she didn’t want them to enter into the obligation blindly. She wasn’t sure either of them fully understood how much work guardianship would be. Once, when she mentioned her fear that Eli would end up in a group home someday, Emily scoffed at the idea.
“Oh, he’ll never be in a group home,” she said. “We’ll take care of him.”
But Gayle wondered where their lives would lead them between that moment and the day Eli might actually appear on their doorstep. She used to tell each of them, “Just make sure you marry someone who would welcome Eli. I don’t want you to pick someone who’d stick him in the basement and only let him out for Thanksgiving and Christmas.” It was meant as a joke, but her concerns were real. Would their careers and relationships leave enough time and space in their lives for Eli? Would their spouses balk at the responsibility of caring for him? Would their jobs take them to the other side of the world? They were still too young to know what the blueprints of their lives would look like. They couldn’t know for certain where, or whether, Eli would fit in.
Gayle’s cousin Marcia was another obvious choice to care for Eli. She was older than Jake and Emily, more mature and in a more s
table phase of her life. Growing up, she and Gayle had always been close—practically sisters. They’d thought their kids would grow up like siblings, too. But the differences between Eli and Marcia’s daughter Kylie were too stark. Williams syndrome was always the elephant in the room. Marcia seemed never to want to talk about the disorder, even when Gayle tried to bring it up. Gayle got the sense that Marcia felt so bad for Eli, and for Gayle, that the topic overwhelmed her.
So Gayle wasn’t sure how to even begin the conversation about guardianship with Marcia. And since they were roughly the same age, the odds weren’t great that she’d be able to care for Eli after Gayle was gone. That left Kylie and her little sister, Morgan. Kylie, an ambitious straight-A student, said she wanted to be a lawyer when she grew up. Gayle didn’t doubt that she could be. No matter what she became, she would make a great ally for Eli as an adult. Gayle wondered whether it was too soon to ask her to include Eli in her plans for the future. Not that she’d have to move him in with her, but just to check up on him when I’m gone? Gayle thought. Just to make sure he’s OK?
She concluded that it was probably not appropriate to have that conversation with a thirteen-year-old. But maybe in five or so years, when Kylie was in college, she could fully appreciate the depth of Eli’s vulnerability and the scope of his needs.
In moments like these, Gayle wished she had a sibling, or that Eli did. She’d always planned to have more than one child, but Eli was so high-maintenance in the early years that she had been in no rush to have another baby. Then her marriage dissolved, and with it her hope of giving Eli a brother or sister. It would have been nice to have a lifelong companion for him, she thought—someone who wouldn’t think of him as a burden.
Her cousins would never call him a burden, she knew. They had always been there for him. But Gayle didn’t want a quick yes-or-no answer when she asked for help in the future. She wanted a frank discussion of all the challenges that caring for Eli would entail. She had been surprised once when her uncle Chris, meaning well—perhaps even tacitly volunteering—suggested, “It would probably be a good idea to leave him to someone who’s retired, who has the time to watch him.”
“I don’t know about that,” Gayle had said. “It would have to be somebody with the energy to keep up with him, to run after him when he wanders away at the store, take him to all his appointments, and do all the errands to get him what he needs.”
No matter how much his relatives loved him, there was no question in Gayle’s mind that Eli would be a burden to whoever took over his guardianship. It’s a big deal, she thought. It will change their lives. In an ideal world she’d be able to care for him herself for as long as he lived.
In Gayle’s most anxious moments, she found herself wishing Eli would die before she did. Then she felt an instant pang of guilt for even imagining such a thing: I want him to live a long, happy life. I just want to be there for him, so he doesn’t get shuffled off to some state-run group home with disgruntled caregivers. If I could live just five minutes longer than he does, I’d be happy.
* * *
WHILE SHE AND ELI WERE at Mimi’s house that evening, Gayle got a phone call from her cousin Shawn, who was in his thirties and had Down syndrome. Gayle wasn’t quite as close to Shawn and his parents as she was to the relatives who lived with Mimi, but Shawn had a keen memory for dates and never missed a birthday. He’d called to wish Eli a happy thirteenth.
Shawn, who was active in a local advocacy group for people with disabilities, also wanted to let Eli know about a dance at a local church just for teens and young adults with special needs, ages thirteen to twenty-one. Eli was too busy watching YouTube videos of people vacuuming to talk, so Gayle thanked Shawn for thinking of him and scratched his cell phone number on a pad of paper, next to a tiki head she had drawn earlier for Eli. She told Shawn she’d call him if Eli wanted to go to the dance. When she hung up, she eyed the phone number as warily as she had her crayon-colored “700” earlier that afternoon.
“Do you think Eli would like something like that?” Gayle’s aunt Suzanne asked brightly. “Dancing? Music?” Before Gayle could respond, Suzanne answered her own question. “Oh, he’ll be wanting to shake hands and hug everyone.”
“He’d be all about dancing,” Gayle said. “But thirteen to twenty-one? I don’t know if that’s appropriate for him. Maybe he’d be better with something more preteen. Movie night or something. Maybe not a dance.”
As if to answer the question himself, Eli skipped back into the kitchen and stopped to admire the paper spiral that Gayle had hung from the doorframe at his insistence. He’d asked to turn the ceiling fan on earlier in the evening, to make the spiral twirl, but was denied permission on the grounds that, in February, it was too cold in the house already.
“I like this twirly,” he cooed now, reaching up to spin it.
Gayle gave Suzanne a meaningful look. Eli wasn’t ready for a dance. He wasn’t ready for dating. Gayle knew this better than anyone, consumed as she was with the fear that he’d never be ready for a normal adolescence, or a normal adulthood—one that didn’t center on vacuuming videos and depend entirely on his mother’s care. Still, he seemed so happy here, surrounded by his family and the twirlies and tiki heads he adored. Gayle wondered: If this was the best it got for him, would it be good enough? He was loved, and he was happy. He didn’t seem to feel deprived. Maybe he’d never change, and that would be OK. Maybe he could be a sweet little boy forever, and she could always be his protector and provider. Maybe that would be fine for both of them.
* * *
ONLY A WEEK OR SO later, Gayle and Mimi took Eli out to dinner. As soon as they walked into the restaurant he violated the no-hugging rule by running up to a waitress and throwing his arms around her. In response, Gayle drew an unusually hard line: she and Mimi turned on their heels and walked out, leading Eli back to the car and ending the meal before it began.
Eli’s response was also different from his usual toddler’s tantrum. He fumed in the backseat all the way home—not wailing petulantly but genuinely pissed.
“This is the worst day of my life!” he complained angrily.
Mimi lectured him about his behavior and its repercussions. Where he would normally have hung his head and apologized, this time he argued back. At the peak of his frustration with his grandmother, he muttered, “Stupid ass.”
Mimi and Gayle were stunned. They had never heard him talk back that way before. His normal meltdowns were tearful and short, and they ended with heartfelt declarations of remorse. This time Eli refused to take back what he’d said. He folded his arms across his chest defiantly when Gayle chastised him for hurting Mimi’s feelings.
As much as Gayle had discounted Eli’s conviction that he would suddenly become a different person now that he was a teenager, she wondered if turning thirteen had in fact been the sea change he believed it was. He seemed to be transforming before her eyes from an earnest, amiable child to a smart-mouthed, headstrong adolescent. Gayle told him she was very disappointed in him. “You need to show your grandmother more respect,” she said sternly. “That kind of language is totally inappropriate.”
Inside, though, she felt a secret thrill of pride. This was behavior truly typical of a teenager—a developmental milestone she hadn’t expected him to reach. She herself had been rude and rebellious when she was his age, albeit in very different ways. And while she couldn’t encourage his behavior, she was grateful to see that Eli, too, could pull off a little impertinence. As much as most parents dreaded it, adolescent rebellion was a natural stage of maturing, and an important one. The ability to stand up for oneself was a valuable life skill, after all, especially for a boy who trusted everyone.
Sixteen
What the Future Holds
Gayle knew there were some adults with Williams who lived independently, but she knew it the same way scientists knew the giant squid existed: from anecdotal evidence, not real-life encounters. So she was thrilled, the month after Eli’s thirte
enth birthday, to meet a mostly independent thirty-one-year-old named Emily at a Williams gathering in Queens. Their acquaintance was brief: Emily and her father were dropping off Emily’s mother, Claire, before going to lunch on their own, since the meet-up was meant for moms only. But just catching a glimpse of the self-possessed young woman gave Gayle hope for Eli’s future prospects.
When the group of mothers assembled in the host’s living room to chat over sandwiches and pasta salad, Gayle sat next to Claire. The lunch guests introduced themselves and discussed some of the joys and struggles of life with their children. Gayle described her endless war against hugging and the way it had escalated since Eli hit puberty. “He’s very sensory. He’s always wanted to touch people,” she explained. “But now it’s just different, because of all the hormones mixed in with it.”
She detailed the disciplinary measures that had proved no match for the strength of Eli’s impulses. She explained how helpless she had begun to feel and how unsure she was that Eli would ever improve.
Claire reached over and patted Gayle’s arm. “All of these things that you’re talking about eventually get better,” she said. “It levels off. At least, with Emily it did.”
Gayle stared at her incredulously.
“I think at his age, that’s when they do all their learning,” Claire continued. “You could stand on your head, trying to get them to do certain things, and you think they’re never going to do it, and then all of a sudden, out of the clear blue sky, one day they do what you want them to do. It’s almost like it was a process for them. They have to go through that process to get to the other side. But it does get easier.”
Claire’s tone was matter-of-fact, but her words were a salve for Gayle’s anxieties. They were confirmation that Gayle wasn’t a terrible mother for not being able to find just the right balance of punishment and rewards to make Eli respect social boundaries. They meant that a miracle cure for his behavior might not exist—that this might simply be a developmental stage Eli would eventually outgrow. If so, Gayle could busy herself trying to ease the hardships of this stage, but ultimately the solution was a matter of time, and all she could really do was wait for him to grow up.
The Boy Who Loved Too Much Page 19