فصل 09

9

Genetics 101

Both sides of Dad’s family were Jews from Russia and Poland. Poppa’s grandparents fled the pogroms and ended up in NYC at the turn of the century. Tata’s parents fled the Nazis and ended up in Argentina in the forties. Poppa and Tata met at a dance on the Lower East Side while she was in town visiting a cousin. They got married, moved to Bayside, and had Dad and Uncle Ben.

Mom’s side of the family is from Brazil. Except for her mother, my beautiful Grans, and her dad, Agosto, who died before I was born, the rest of Mom’s family—all her glamorous aunts, uncles, and cousins—still live in Alto Leblon, a ritzy suburb south of Rio. Grans and Agosto moved to Boston in the early sixties, and had Mom and Aunt Kate, who’s married to Uncle Porter.

Mom and Dad met at Brown University and have been together ever since. Isabel and Nate: like two peas in a pod. They moved to New York right after college, had me a few years later, then moved to a brick townhouse in North River Heights, the hippie-stroller capital of upper upper Manhattan, when I was about a year old.

Not one person in the exotic mix of my family gene pool has ever shown any obvious signs of having what August has. I’ve pored over grainy sepia pictures of long-dead relatives in babushkas; black-and-white snapshots of distant cousins in crisp white linen suits, soldiers in uniform, ladies with beehive hairdos; Polaroids of bell-bottomed teenagers and long-haired hippies, and not once have I been able to detect even the slightest trace of August’s face in their faces. Not a one. But after August was born, my parents underwent genetic counseling. They were told that August had what seemed to be a “previously unknown type of mandibulofacial dysostosis caused by an autosomal recessive mutation in the TCOF1 gene, which is located on chromosome 5, complicated by a hemifacial microsomia characteristic of OAV spectrum.” Sometimes these mutations occur during pregnancy. Sometimes they’re inherited from one parent carrying the dominant gene. Sometimes they’re caused by the interaction of many genes, possibly in combination with environmental factors. This is called multifactorial inheritance. In August’s case, the doctors were able to identify one of the “single nucleotide deletion mutations” that made war on his face. The weird thing is, though you’d never know it from looking at them: both my parents carry that mutant gene.

And I carry it, too. The Punnett Square

If I have children, there’s a one-in-two chance that I will pass on the defective gene to them. That doesn’t mean they’ll look like August, but they’ll carry the gene that got double-dosed in August and helped make him the way he is. If I marry someone who has the same defective gene, there’s a one-in-two chance that our kids will carry the gene and look totally normal, a one-in-four chance that our kids will not carry the gene at all, and a one-in-four chance that our kids will look like August.

If August has children with someone who doesn’t have a trace of the gene, there’s a 100 percent probability that their kids will inherit the gene, but a zero percent chance that their kids will have a double dose of it, like August. Which means they’ll carry the gene no matter what, but they could look totally normal. If he marries someone who has the gene, their kids will have the same odds as my kids.

This only explains the part of August that’s explainable. There’s that other part of his genetic makeup that’s not inherited but just incredibly bad luck.

Countless doctors have drawn little tic-tac-toe grids for my parents over the years to try to explain the genetic lottery to them. Geneticists use these Punnett squares to determine inheritance, recessive and dominant genes, probabilities and chance. But for all they know, there’s more they don’t know. They can try to forecast the odds, but they can’t guarantee them. They use terms like “germline mosaicism,” “chromosome rearrangement,” or “delayed mutation” to explain why their science is not an exact science. I actually like how doctors talk. I like the sound of science. I like how words you don’t understand explain things you can’t understand. There are countless people under words like “germline mosaicism,” “chromosome rearrangement,” or “delayed mutation.” Countless babies who’ll never be born, like mine. Out with the Old

Miranda and Ella blasted off. They attached themselves to a new crowd destined for high school glory. After a week of painful lunches where all they would do was talk about people that didn’t interest me, I decided to make a clean break for it. They asked no questions. I told no lies. We just went our separate ways.

I didn’t even mind after a while. I stopped going to lunch for about a week, though, to make the transition easier, to avoid the fake Oh, shoot, there’s no room for you at the table, Olivia! It was easier just to go to the library and read.

I finished War and Peace in October. It was amazing. People think it’s such a hard read, but it’s really just a soap opera with lots of characters, people falling in love, fighting for love, dying for love. I want to be in love like that someday. I want my husband to love me the way Prince Andrei loved Natasha.

I ended up hanging out with a girl named Eleanor who I’d known from my days at PS 22, though we’d gone to different middle schools. Eleanor had always been a really smart girl—a little bit of a crybaby back then, but nice. I’d never realized how funny she was (not laugh-out-loud Daddy-funny, but full of great quips), and she never knew how lighthearted I could be. Eleanor, I guess, had always been under the impression that I was very serious. And, as it turns out, she’d never liked Miranda and Ella. She thought they were stuck-up.

I gained entry through Eleanor to the smart-kids’ table at lunch. It was a larger group than I’d been accustomed to hanging out with, and a more diverse crowd. It included Eleanor’s boyfriend, Kevin, who would definitely become class president someday; a few techie guys; girls like Eleanor who were members of the yearbook committee and the debate club; and a quiet guy named Justin who had small round glasses and played the violin, and who I had an instant crush on.

When I’d see Miranda and Ella, who were now hanging out with the super-popular set, we’d say “Hey, what’s up,” and move on. Occasionally Miranda would ask me how August was doing, and then say “Tell him I say hello.” This I never did, not to spite Miranda, but because August was in his own world these days. There were times, at home, that we never crossed paths. October 31

Grans had died the night before Halloween. Since then, even though it’s been four years, this has always been a sad time of year for me. For Mom, too, though she doesn’t always say it. Instead, she immerses herself in getting August’s costume ready, since we all know Halloween is his favorite time of year.

This year was no different. August really wanted to be a Star Wars character called Boba Fett, so Mom looked for a Boba Fett costume in August’s size, which, strangely enough, was out of stock everywhere. She went to every online store, found a few on eBay that were going for an outrageous amount, and finally ended up buying a Jango Fett costume that she then converted into a Boba Fett costume by painting it green. I would say, in all, she must have spent two weeks working on the stupid costume. And no, I won’t mention the fact that Mom has never made any of my costumes, because it really has no bearing on anything at all.

The morning of Halloween I woke up thinking about Grans, which made me really sad and weepy. Dad kept telling me to hurry up and get dressed, which just stressed me out even more, and suddenly I started crying. I just wanted to stay home.

So Dad took August to school that morning and Mom said I could stay home, and the two of us cried together for a while. One thing I knew for sure: however much I missed Grans, Mom must have missed her more. All those times August was clinging to life after a surgery, all those rush trips to the ER: Grans had always been there for Mom. It felt good to cry with Mom. For both of us. At some point, Mom had the idea of our watching The Ghost and Mrs. Muir together, which was one of our all-time favorite black-and-white movies. I agreed that that was a great idea. I think I probably would have used this weeping session as an opportunity to tell Mom everything that was going on at school with Miranda and Ella, but just as we were sitting down in front of the DVD player, the phone rang. It was the nurse from August’s school calling to tell Mom that August had a stomach ache and should be picked up. So much for the old movies and the mother-daughter bonding.

Mom picked August up, and the moment he came home, he went straight to the bathroom and threw up. Then he went to his bed and pulled the covers over his head. Mom took his temperature, brought him some hot tea, and assumed the “August’s mom” role again. “Via’s mom,” who had come out for a little while, was put away. I understood, though: August was in bad shape.

Neither one of us asked him why he had worn his Bleeding Scream costume to school instead of the Boba Fett costume Mom had made for him. If it annoyed Mom to see the costume she had worked on for two weeks tossed on the floor, unused, she didn’t show it. Trick or Treat

August said he wasn’t feeling well enough to go trick-or-treating later in the afternoon, which was sad for him because I know how much he loved to trick-or-treat—especially after it got dark outside. Even though I was well beyond the trick-or-treating stage myself, I usually threw on some mask or other to accompany him up and down the blocks, watching him knocking on people’s doors, giddy with excitement. I knew it was the one night a year when he could truly be like every other kid. No one knew he was different under the mask. To August, that must have felt absolutely amazing.

At seven o’clock that night, I knocked on his door.

“Hey,” I said.

“Hey,” he said back. He wasn’t using his PlayStation or reading a comic book. He was just lying in his bed looking at the ceiling. Daisy, as always, was next to him on the bed, her head draped over his legs. The Bleeding Scream costume was crumpled up on the floor next to the Boba Fett costume.

“How’s your stomach?” I said, sitting next to him on the bed.

“I’m still nauseous.”

“You sure you’re not up for the Halloween Parade?”

“Positive.”

This surprised me. Usually August was such a trouper about his medical issues, whether it was skateboarding a few days after a surgery or sipping food through a straw when his mouth was practically bolted shut. This was a kid who’s gotten more shots, taken more medicines, put up with more procedures by the age of ten than most people would have to put up with in ten lifetimes, and he was sidelined from a little nausea?

“You want to tell me what’s up?” I said, sounding a bit like Mom.

“No.”

“Is it school?”

“Yes.”

“Teachers? Schoolwork? Friends?”

He didn’t answer.

“Did someone say something?” I asked.

“People always say something,” he answered bitterly. I could tell he was close to crying.

“Tell me what happened,” I said.

And he told me what happened. He had overheard some very mean things some boys were saying about him. He didn’t care about what the other boys had said, he expected that, but he was hurt that one of the boys was his “best friend” Jack Will. I remembered his mentioning Jack a couple of times over the past few months. I remembered Mom and Dad saying he seemed like a really nice kid, saying they were glad August had already made a friend like that.

“Sometimes kids are stupid,” I said softly, holding his hand. “I’m sure he didn’t mean it.”

“Then why would he say it? He’s been pretending to be my friend all along. Tushman probably bribed him with good grades or something. I bet you he was like, hey, Jack, if you make friends with the freak, you don’t have to take any tests this year.”

“You know that’s not true. And don’t call yourself a freak.”

“Whatever. I wish I’d never gone to school in the first place.”

“But I thought you were liking it.”

“I hate it!” He was angry all of a sudden, punching his pillow.

“I hate it! I hate it! I hate it!” He was shrieking at the top of his lungs.

I didn’t say anything. I didn’t know what to say. He was hurt. He was mad.

I let him have a few more minutes of his fury. Daisy started licking the tears off of his face.

“Come on, Auggie,” I said, patting his back gently. “Why don’t you put on your Jango Fett costume and—”

“It’s a Boba Fett costume! Why does everyone mix that up?”

“Boba Fett costume,” I said, trying to stay calm. I put my arm around his shoulders. “Let’s just go to the parade, okay?”

“If I go to the parade, Mom will think I’m feeling better and make me go to school tomorrow.”

“Mom would never make you go to school,” I answered. “Come on, Auggie. Let’s just go. It’ll be fun, I promise. And I’ll let you have all my candy.”

He didn’t argue. He got out of bed and slowly started pulling on his Boba Fett costume. I helped him adjust the straps and tighten the belt, and by the time he put his helmet on, I could tell he was feeling better.