They called girls like her butterflies. At least the moms on Instagram did. Posting pictures of toddlers with low-set ears and thick necks and little girls with strangely puffed hands and feet. They used hashtags like #butterflygirl or #turnersyndrome. More often than not it was photos of blankets or baby toys bought for daughters who would never be, their presence heaviest in absence.
They called girls like her butterflies because Turner Syndrome meant just one X chromosome instead of two like normal girls. Just X. The shape of butterfly wings.
My little butterfly, the captions always said.
Liz thought the endearment was kind of cruel, though it was meant with nothing but tenderness. She didn’t feel like any kind of butterfly. It had taken all her fifteen years to figure out that an A-line bob could hide her thick neck, and that well-placed belts could force an hourglass shape onto her barrel ribs.
She didn’t see many fifteen-year-old Turners girls calling themselves butterflies on Instagram.
Not that there were terribly many of them in the first place. Only one in every twenty-five hundred girls had Turner Syndrome. Only one percent of fetuses with Turner Syndrome were carried to term, avoiding miscarriage.
Hence the photos of unused baby blankets.
Liz’s dad said it meant she was special. Here for a reason, he said. Liz just wished she could wear a ponytail like every other girl.
She tugged hangers in her closet, going through each of her shirts for the fourth time. Cinched waist only worked in so many circumstances. For the party that night, jeans would be expected. And trying to figure out what to wear with jeans was basically the bane of her existence.
She hadn’t been to a sleepover since third grade. She remembered it vividly, too, because at the time she’d recently started taking the daily growth hormone shots that would help get her to her current almost-average five-foot-three instead of the Turner Syndrome four-foot-something. She’d started panicking and had to sneak out and call her mom who told her missing one night of shots would be okay.
She’d stopped taking the shots last year, now that she was tall enough. Her doctor said they’d put her on birth control next year so she could start her period.
Yeah, she’d be a junior before having her period. She didn’t know whether that was good or embarrassing. Girls in her class had been complaining about periods for years already, and she never knew what to say when they did. Her mom asked the doctor if she even had to have a period at all. Wouldn’t it be nice to skip it all together? she’d said. But the doctor said that wasn’t possible. That periods were an unfortunate necessity. Something to do with hormone regulation and bone density.
Turner Syndrome meant she’d never be able to have kids, but she wasn’t really worried about that quite yet. She’d never even been kissed. She figured she needed to worry about that part first, anyway.
She finally picked out a light blue blousy top and stuffed it into her backpack along with her toothbrush and pajamas. The pajama part didn’t worry her as much. Hoodies and sweatpants were the great democratizers.
She and her dad didn’t talk much as they drove to Jhanvi’s house. The January chill bit through Liz’s sweater as she walked to the door. Her dad wanted to walk her to the door, but Liz said no.
The door opened before she even rang the doorbell.
“Hey Liz!” Jhanvi said. “You’re here!”
Liz allowed herself one small wave goodbye to her dad, who gave her a thumbs-up before pulling away from the curb. She didn’t feel any different seeing him drive away than she had in third grade.
Jhanvi led her inside, and Liz removed her Converse and set them by the door. “Okay, can I just tell you something?” said Jhanvi. “Every day your eyeliner is completely gorgeous and perfect and I always mean to ask you how you do it. I try to do cat eyes like you but I can’t ever get it to work.”
Along with belt cinches and blousy shirts, make-up had taken Liz a long time to figure out. She had wide eyes she’d spent hours in front of her bathroom mirror learning to accentuate. Turner Syndrome meant fine motor dexterity was a slight issue, but she’d worked on her eyes over and over, with pencil, crayon, and liquid eyeliners of pretty much every brand, until she’d figured it out. She’d watched hours of tutorials on YouTube, though she’d never found anyone in those videos who seemed to be working as hard at it as she had to. She gave Jhanvi the only honest answer.
“Practice,” she said. “Probably an embarrassing amount.”
She didn’t mention how long it had taken her to figure out how to do those funky, beachy waves with her straightener.
Jhanvi headed down the plush-carpeted stairs, and Liz followed her. The house wasn’t big, but the yellow light from the chandelier, the family pictures, and intricate tapestries on the walls, made it all feel like a home. Liz wasn’t surprised Jhanvi came from a place like this. A welcoming place. Jhanvi was the kind of girl who could be friends with the Dungeons and Dragons kids and the cheerleader group at the same time, without anyone thinking she was dorky or unkind. She was the kind of girl who could get some ignorant comment about her brown skin on Monday and by Friday she and the conformed racist would be shopping at the mall together.
Liz had the opposite situation. For her, the whole world seemed like ill-fitting jeans. Wherever she went it wasn’t quite right.
The basement was one large room featuring a large couch, a maroon rug, and several large bean bags all surrounding a wall-mounted TV. Four girls were already draped over the couch and bean bags. Liz felt her stomach ice up a little bit when she saw who else was there. The girls on the couch were Angela and Candice, two blonde girls who were captains of the cheer team, whom everybody knew. They’d never said anything mean to her, but somehow they made Liz feel like a blithering idiot every time they walked past her in the hall.
On one of the bean bags was Blaire, the third member of the ABC popular trio, who was on the cheer team but not a captain, redheaded instead of blonde, who always seemed to be trying to catch up to the other two as they walked to classes. If Liz had known the ABC’s were going to be here, she might not have come.
The last girl was someone Liz had seen but whose name she didn’t know. She had long black hair with a red streak and perfect straight-cropped bangs. She was in a black band T-shirt Liz wished she could pull off, and her eyeliner was YouTube tutorial perfect.
Liz swallowed. What was she thinking? There was no place for her in this crowd. Who was she going to talk to? What was she supposed to talk about? She was going to embarrass herself over and over all night long, she just knew it. Liz, the sow in a room full of tigresses.
“So,” Candace said, after Liz and Jhanvi had found seats on the floor, leaning against the couch or the wall. “Liz is short for Elizabeth, right? So, why’d you end up with Liz instead of like, Ellie or Beth or any of those nicknames?”
Liz looked down at her bare feet. She should have painted her toenails. Why didn’t she think to paint her toenails? “Not sure,” she shrugged. “I guess it just ended up that way.”
“It’s cute,” Candace said, and Liz couldn’t remotely tell whether or not the statement was genuine.
The strategy of simple answers when questions were addressed to her worked well for the first few hours of the evening. She didn’t say much until someone asked her something, at which point she tried her best to seem nonchalant and unfazed. Or if she found herself in a more one-on-one situation for a moment—passing one of the girls on the way to the bathroom, getting a drink with someone in the kitchen—she kept a running list of questions to ask them. She felt ridiculous about needing a mental list of questions, but got minor palpitations if she forgot one for a second.
Did everybody need social masks and mental lists like this? Probably not. She was some kind of socially inept soul in a bizarrely messed-up body.
Still, things seemed to be going okay. She even managed to get a couple laughs as the conversation went on. Then the subject of the Winter Formal dance came up.
“I’m going with Jax, of course,” said Candice. “I’ve already found this periwinkle gown that’s completely gorgeous.”
“God, you always find the best stuff,” Angela said. “I can never find anything.”
Liz wanted to roll her eyes. Angela had dainty boobs and Barbie-doll legs. She could wear tinfoil and look runway ready. She had no clue the torture that dress shopping could be when your legs were too short for your torso and your ribs were shaped like a beer keg. She couldn’t even get the vast majority of the dresses she tried on to zip up. Even dresses that went past her toes.
“I’m going to wear a sari,” Jhanvi said. “Actually, it’s one of my grandmother’s. I’m super excited.”
“That’s so cool!” Candice said. This time Liz could tell it was genuine. In fact, there was the tiniest hint of approval-seeking in Candace’s voice. Because Jhanvi somehow existed above the normal social groups, it was as if Candice was frustrated at not being able to reach her. “What about you, Morgan?”
The black-haired girl flicked her red streak glamorously over her shoulder. This girl’s confidence came from a different place than the ABCs’. Those girls were queen because everybody wanted them to be. Morgan was queen of her own domain because she demanded it. “Red,” she said. “Dark red.”
The girls ooohed. Jhanvi started singing “Roxanne” from Moulin Rouge and everyone laughed.
“Your turn, Liz,” Angela said.
Liz swallowed. “Still figuring that one out,” she said. She didn’t say she was planning on skipping the dance all together.
“Ooh, let’s see,” said Candice. She looked Liz over closely and Liz willed her hot cheeks to cool. “I think you’d look super great in like, an emerald green. Or maybe more like a muted dark green. That would match your eyes.”
All the other girls looked her over and gave their consent. Liz already knew green was her color. It was the fit of formal wear that never worked. She just shrugged, and was relieved when Jhanvi’s mom brought down the fourth large pizza and the topic turned to what Netflix show to turn on.
But Liz’s relief flickered when they picked Law and Order: SVU. There was one episode of that show where the plot revolved around a girl with Turner Syndrome getting kidnapped. It was the only show she’d ever found that had a character with Turner Syndrome, and the episode made her sick. The detectives said the character was trapped in the body of a child. They said the kidnapper had to be a pedophile to be attracted to her.
When they landed on that exact episode, Liz couldn’t even muster surprise. It just felt inevitable. Of course, at the one real party she’d been invited to in years, they’d end up watching the one episode of television that was basically a forty-three-minute personal insult. Classic cosmic cruelty.
She watched as the detectives learned the girl was teased for looking really young. That wasn’t right at all. Liz had never been teased, not really. Well, except once, in fifth grade, about hearing aids, which she’d stopped wearing. She managed just fine without them. And yeah, she looked a little younger than her age, she supposed, but so did tons of people. Looking young was the good part of Turner Syndrome. The actress who played the TS girl was cute as a button. She didn’t have webbing on the side of her neck she couldn’t truly hide. She didn’t have barrel-shaped ribs and stubby legs.
All the other girls laid back and watched, and Liz just hoped she didn’t look as agitated as she felt. Everybody else was so casual. Everybody else wasn’t thinking twice about it. Everybody else had two sex chromosomes. She said a silent prayer that nobody would be curious enough to look up Turner Syndrome on their phones. Liz had done it plenty of times, but she could only look at photos of Butterflies for so long before she had to look away. She looked just enough like them—too much like them. She didn’t want to look like a syndrome. She didn’t want one of these girls scrolling through their phone, glancing up at her with a look of recognition and curiosity, looking back down again.
When they got to the “trapped in the body of a child” line, Liz stood up, mumbling something about finding a bathroom, and walked out of the room. She was pissed, but not even at the TV show. She got pissed whenever Turner Syndrome became a central theme of her thoughts, like it had that night. The vast majority of the time it was totally a non-issue, and that’s what people didn’t get. The vast majority of the time life was about her sketchbook, and her homework, and Vogue, and her parents, and her closet. Like any other fifteen-year-old. It’s not like a diabetic went around thinking I’m a diabetic all day long.
Liz made it down the hall and found the bathroom, turned on the light, and shut the door behind her before realizing she wasn’t the first one there.
Blaire was on the floor, sitting against the wall between the toilet and the shower, knees pulled to her chest.
“Oh gosh, sorry…” Liz started. Then she registered the look on Blaire’s face, the red swelling of her eyes.
“You okay?” Liz asked.
Blaire rolled her eyes and sniffed.
Liz looked at the eggshell-colored tile, feeling stupid. But she couldn’t just leave Blaire sitting here. “I mean, what’s wrong?”
“It’s nothing,” Blaire said, but in a way that even Liz, who wasn’t great at reading between the lines, could tell she meant something more like, Please ask me again so I can vent and cry.
“It’s not nothing,” Liz said, sighing. This is not what she expected or wanted from her weekend. She already knew she and Blaire didn’t have much in common, so this wasn’t one of those times when being a shoulder to cry on would make them sudden friends. But she couldn’t just leave Blaire just sitting there. “Seriously, you can talk to me. I won’t tell anyone anything you don’t want me to.”
Blaire’s shoulders bounced with a restrained sob. “It’s… I mean this just keeps happening. I’m running out of excuses why they haven’t been to my house. Angela and Candice, I mean. And when we go shopping I pretend nothing works when really, I’m even hotter than they are if I could just… but now this stupid, stupid dance… They’re going to expect… They’ve already talked about coordinating dresses. But Angela spent almost four hundred dollars on her dress. FOUR HUNDRED. I don’t know what I’m going to do.”
Liz stared at the whimpering girl for a moment, then sat on the toilet seat. “This is about dance dresses?”
“Well it’s going to be the… the last strike, I just know it,” Blaire said, throwing a hand up in the air. “I can only pretend that cheap clothes are a fashion statement for so long. I know they notice. I know they’re already talking about me.”
“Wait,” Liz said. “I’m trying to understand. You’re worried about Winter Formal because it will make Angela and Candace notice that you can’t afford a four-hundred-dollar dress?”
Blaire threw both hands up this time. “That I’m poor. Okay? I said it. Poor. If they ever saw my house they… They’d laugh at me.”
Blaire hugged her knees tighter, and Liz could see fear in her widened pupils. But the thing was, the fear looked very familiar. Blaire looked the way Liz felt when she imagined someone noticing her wide neck, or heaven forbid, commenting on it. The way she felt whenever the coach said they were doing laps in P.E. When her fingers looked chubby no matter what color polish she put on her nails. Hell, Liz herself was so freaked out about the idea of formal dresses she wasn’t even planning on going to the dance.
“I’m sorry,” Liz said. Her mind swirled, trying to think of something else to say, words that would help or at least comfort Blaire. But she wasn’t very good at that kind of thing. Finally, she just said sorry again.
“Not like it’s your fault,” Blaire said.
That was true, Liz supposed. Blaire’s financial situation was not really her problem. But she had spent the night feeling alone, alien, and out of place, when someone sitting next to her was feeling the exact same way. Even if it was for different reasons. Even Jhanvi, who never seemed to feel out of place, was the only brown-skinned girl at this party, and maybe it had taken her a while to figure out how to be okay with that.
Blaire tugged at a loose thread in the hem of her jeans, and Liz watched her. She could see Winter Formal in her head. Whatever Blaire managed to work out dress-wise, she was going to be paranoid the entire night. She could be gifted a four-hundred-dollar dress and there would still be a panicked glow of worry behind her eyes. On the other hand, Jhanvi would be the only girl in school wearing a sari, and she would be the envy of everybody else. Because she knew who she was, and was honest about it.
It was about hiding or not hiding.
It was about doing vulnerable you things, or spending the night curled up in a dark bathroom.
Liz stood up. “Well, good luck,” she said. “You… you’ll look great, whatever you wear. I’ll keep a seat for you out there.”
She left the bathroom, keeping the light on, but still feeling awkward about leaving someone sitting alone on the bathroom floor. But she didn’t really know what else to do.
It was about hiding, she thought again.
She stood alone in the hallway for a moment, trying to let this sense of realization seep into her brain, trying to figure out what it meant.
It would take a few more days to figure that out, Liz thought. She didn’t want to hide, but she wasn’t sure what not hiding would look like. There was still no way in hell she was walking back into that room and saying, Hey, this is what Turner Syndrome is REALLY like. No way.
But she could at least go back in the room. They were on to old episodes of The Office. This time it was one of her favorite episodes ever, the one at the company picnic.
“Jim and Pam are seriously relationship goals. Nobody is better than him,” Candice said.
“Right?” Angela said.
“Ok, honestly,” Liz said, sitting down. “I mean Jam is amazing of course, but Michael and Holly just make me feel better about the whole world.” Liz swallowed, hardly daring to glance around in case someone was giving her the Judgy Brow. But the other girls laughed, and Liz did her best to believe the laughter was friendly.
Maybe admitting strange celebrity crushes was a dumb way of not hiding, but it was a start. She really did think Steve Carrell was ridiculously attractive, even though he was old enough to be her father.
That’s the other thing the CSI episode got wrong about Turner Syndrome. Turner’s girls could have crushes and a sex drive like anybody else.
It was getting late, and as the episodes kept playing, the other girls changed into PJs and curled up under blankets, trying to keep their eyes open. Blaire was back, snug against the arm of the couch, not sleeping.
Liz wasn’t sleeping either. Her brain refused to relax. Like usual, when that happened, she pulled out her sketchbook.
Those stupid fine-motor skill issues hadn’t been great when she was learning to sketch either, and she’d spent many of her early drawing years seeped in frustration at herself, ready to chuck the stupid notebook across the room. It’s one reason she continually went back to clothes and designs, actually. In those drawings, her sketches could be sloppy and childish, because if she could get the pattern right and follow that correctly, then the end result would turn out the way she wanted. Often enough, anyway.
She’d never been brave enough to wear one of her own things to school, though.
She spread her notebook out across her lap and took out a pen. (Her teachers always told her to sketch in ink). A prom dress would actually be easier than some of the other things she’d made. (Pants were the hardest, by far.) She could do some kind of collar to shape her neck, a cute ruffle or tie collar maybe. Who cared if they were cheesy. She liked them. And an empire waist with lacing would give her body the structure she wanted…
“What are you drawing?”
Morgan looked over her shoulder at the page. Liz’s first instinct was to slam the book closed, but she took a breath in and kept the notebook open. “Um… it’s… well, I’m toying with the idea of making my own dress. Like for the dance. I don’t know, it’s stupid.”
These last words slipped naturally out of her mouth, without her even trying. But it wasn’t stupid. She would work at this not-hiding thing. She’d get better.
“That’s cool,” Morgan said, and sat back down.
It was cool, Liz thought. Not many girls could sew their own clothes, and Liz knew she was good at it.
She took a photo of her rough sketch and posted it to her Snapchat stories. She almost never posted her drawings on Snapchat or Instagram or anything. But she was proud of this sketch. Excited about it. She didn’t need to hide it.
She would post a picture of herself in her dress too, once it was done. She very rarely posted selfies. (Most of her Instagram was of pretty fabrics, patterns, and vintage sewing machines. And her cat Dmitri.) She could talk about the process of making the dress, maybe, or where to buy the best material and patterns. She would be brave.
She didn’t have to tag it #butterflygirl or #turnersyndrome if she didn’t want to. She didn’t even have to tag it #selfie or #seamstress. She didn’t have to tag it anything.
It would just be her. With all the things that entailed.
There wasn’t really a hashtag for that.