When my sister is at a loss for a story to tell, she always opts for the same one. We were little; Emily was still small enough that she needed a car seat. She wore tiny dresses and her baby teeth were just starting to fall out. She looked like a little doll and I could lift her if I tried hard enough. I was still small and her body weight was enough to make my knees buckle, but that never stopped me from picking her up. It was summer and we had stopped at an ice cream parlor after running errands with our mom. I remember nothing of the ice cream, and I don’t think Emily (Emmy, I call her) does either. The ice cream isn’t important. What matters in this story is the rocket ship.
In my memory it was wooden, painted blue, and tall, with a tiny, octagon-shaped window at the very top. When you went inside there was barely any light except for the few rays of sun that managed to sneak through the slats of wood, but the very top was illuminated. There were stairs you could climb, but they didn’t go all the way up. For whatever reason, the flight of steps halted, leaving us staring up at the opening that led to a platform. When Emmy tells the story, she doesn’t cover any of this. She skips over these finite details and gets straight to the point—the point being that I shoved her right up into the top of that rocket ship. I can’t remember if she asked me to or if I just decided on my own that one of us should get to see the light. Regardless of motive, I picked up her little body, hoisted her over my head, and somehow leveraged her onto the platform. She didn’t cry, she just sat there and refused to come down.
Mom got her eventually, figuring out that the only way to get her feet on the ground was to pull her down and put them there. We laughed and laughed on the drive home, joking that we were lucky our mom was thin enough to fit into a piece of playground equipment. We were lucky she wasn’t the type to get angry over a situation like this. We were lucky that Emmy was a soft, tranquil little thing who showed her resistance quietly. Never one for tantrums, this was just one instance of her effortless tranquility—her sound ability to object without objecting.
To this day, she brings up that story almost every time I see her. Remember when you shoved me up that rocket ship? I do remember it. But I’m never quite sure why she does.
I’m never quite sure why she thinks what she thinks. I don’t expect that I ever will be.
In every cell in the human body there is a nucleus. This is where genetic material is stored, and where genes can be found. Genes carry the codes responsible for all of our inherited traits. These genes are grouped along rod-like structures called chromosomes. Typically, the nucleus of each cell contains 23 pairs of these—half of which are inherited from each parent. Ninety-five percent of cases of Down syndrome occur when an individual has a full or partial extra copy of chromosome 21.
Illinois was the 21st state to join the United States of America. Every 21 minutes, a baby is stillborn. The jersey number 21 has been retired by several North American sports teams in honor of past playing greats in baseball, basketball, and hockey. 21 is the sum of the first six natural numbers (1+2+3+4+5+6=21), making it a triangular number, whatever that means. In numerology, the number 21 represents duality, communication, societal values. I’m 21 years old. Nothing I just told you really matters. I suppose I just want there to be some significance—something poetic or beautiful about the 21st chromosome. But there isn’t. Down syndrome just exists.
Tuesday, December 16, 1996
I know my mother. And I know that when her baby was born and they told her everything was fine, she believed them. Labor went smoothly; she had been through it five times already—two times were heartbreakingly fruitless, with children she lost due to complications. The other three times were us—my brother Alex, my sister Erika, and me. We were her kids, children she raised, loved, nurtured, adored, had, and now this baby was her last one, a final addition to her little tribe of love. This was Emily, another girl, the even-ing fourth of the previously born three, and the last baby that my mom, a 41-year-old woman, would ever have.
If I know my mother, I know that she had her blinders on.
Everyone told her the baby was fine, that Emily was beautiful and average. And they all believed it. The day after she was born, they even used her for a sibling’s class where the sticky hands and dopey smiles of toddlers and children would be surrounding her perfectly swaddled little body, holding her incorrectly at first, only to be reminded by a soft-spoken nurse, Watch the head, always protect the head.
December 17, 1996, evening
The nurses didn’t realize she was sick yet. She was perfect, angelic even. It wasn’t until that evening that they started to question her serenity. She didn’t cry, she didn’t seek to eat, she was soundless and still. It’s easy to be unsure of the doctors and nurses, wondering how they could possibly let her slip under the radar for over 24 hours, exposing her to the germs of little children and allowing her to lie still, wasting the time that, in reality, if they didn’t do something, she had very little of. But there is a lovely sense of consciousness in their disregard. They saw her perfection and didn’t seek to look beyond it.
It’s a shame that their optimism had to be disproven.
My mother was concerned. They weren’t bringing her the baby. She’s just resting, don’t worry, the nurses told her. She went to sleep and woke up mid-night; they still hadn’t brought her Emily. Around 5 a.m. a doctor woke her with questions about the bridges of her other daughters’ noses. My mother was confused, wondering why a detail like this was of any relevance at all. The doctor spoke again, We are starting to suspect that Emily may have Down syndrome and she is now experiencing heart failure. We’d like to get a blood sample.
I know that when my mother heard this, she immediately snapped into her elusive but effective defense mode.
She got the news when my dad was at home, taking care of the rest of us who were apparently sick with the flu at the time. She called him immediately. We have to act quickly, she said, they want to transfer her to another hospital. Dad said he’d be right in.
Mom decided to take a shower. She walked into the tiny, cramped bathroom and flicked on the switch. The ceiling fan roared and the light was dim—the bulb probably needed to be changed. She turned on the shower and stepped out of her gown. As soon as the water hit her body, she screamed at the top of her lungs. She sat on the floor of the shower and sobbed, ramming her fists against the flesh colored tile that monochromatically surrounded her like a padded room in an asylum. She cried until she was shaking, wailed until her throat ached. Then she turned off the water, got dressed, and made her way to the nursery.
I know she had her blinders on.
She had my dad and she had three kids and she had a tight family unit; by all definitions she had people.
But when she tells the story, she never says ‘we.’
Approximately 40 percent of children born with Down syndrome have congenital heart defects, but 40 percent is less than half, and by that logic, thinking that would never be me doesn’t seem like some insane plea to the universe. It actually sounds pretty plausible.
Some of the heart conditions require surgery while others only require careful monitoring. Emily would have surgery. It would be in March of 1996. Not after she got to be six months old and 15 pounds like they wanted, but much sooner than that because she was withering. There was no time to wait. It would be terrifying and my parents would watch her deteriorate and phrases like ‘she’s not gonna make it’ would be tossed around by non-immediate family members and professionals alike, a frustrating spectrum from those who knew nothing and those who supposedly knew everything. My mother would have horrible visions of her in a coffin, my brother wouldn’t talk about it until one night when he’d sob and say I know she’s gonna die, I know it. Emily would get a feeding tube put into her nose, my parents would halt visitors at the doorstep if they had the slightest hint of a cold. I would call her Garlic, considering it to be a pet name even though it wasn’t; considering her to be my healthy baby sister, even though she wasn’t. Time would pass so slowly, yet everything would happen at once.
Emily would have surgery. It would be in March of 1996. The doctor would power walk into the waiting room, beaming. My mother says she’ll never forget the look on his face, the high of his expression. She said she’ll never fail to remember the sound of his voice when he practically yelled out in ecstasy PINK! That baby is pink! She did the best she could have possibly done, and her color is pink.
In 1910, children with Down syndrome weren’t expected to live past age nine. In 1946, it upped itself to 12. The average life expectancy of individuals with Down syndrome is now 55 years, with many living into their sixties and seventies. The reasons behind this life expectancy aren’t well explained anywhere, which is evident in most of the research on Down syndrome. People with Down’s vary just as much as the rest of us when it comes to disposition, likes and dislikes, and personality characteristics. However, there is some sameness, some similar traits mandatorily inflicted by the disability. I’ve read that they share in their coping strategies, tending to seek out routine, order, consistency. Some individuals use a technique called “self-talk” as a way of directing behavior, expressing their thoughts, and making sense of confusing circumstances. People with Down syndrome can often come across as stubborn, this usually representing a form of communication, a misunderstanding, or even their means of taking control in a situation. As I write these out, I see all of them in Emily, most of them visible in instances I’ve sighted in this essay. But where I often struggle, where she causes me to take a step back and think lies in who she is. Not just who she is but what she is and how she can be both a who and a what at the same time—how much of her is her disability, and how much of her is her.
Emily was born when I was three and my mother didn’t know she had Down syndrome beforehand. At birth she was a surprise—a gravely ill, mentally challenged, frightening surprise. It’s odd to think that everyone I know probably remembers her birth more clearly than I do. When I try to think back on what I must have thought about her not as a sister, but as a disabled baby, there’s really nothing. I’d imagine I had a very acute sense of tunnel vision, some sort of mixture between childlike naivety and willful ignorance. In my memories, there’s only my teeny tiny little sister who I was instantly and irrevocably obsessed with.
As her closest in age, I’d argue that while I may not know her better than anyone, I certainly know her differently. Emily is ethereal in a way that can make me uncomfortable. In her eyes, there’s a confidence. Maybe I can recognize it because we’ve spent 18 years together. She was my real-life baby doll and I got the fiercest of joy in toting her around on my hip, taking her squishy, low-muscle-toned body and loving it to pieces. She was my most lively, often my only audience, laughing as I’d dance around the kitchen, banging a wooden spoon on Tupperware as she nurtured my childish and unyielding need to be praised, giving me the adoration an older sibling never would. She was my favorite excuse to avoid being social on a Saturday night. Babysitting her meant simply being a presence; we’d hole up in our own rooms, come together for microwavable chicken nuggets, and swiftly return to our little worlds, both of us basking in our ritual of mutual introversion. Because of this closeness, this birthright of a bond, I know her.
Her awareness was never a secret to me. To everybody else she’s a wide-eyed innocent, a naïve fawn caught in the headlights of a speeding truck on an I-96 type of highway. She’s deceptive in that way. Shrouded by the cloak of disability, she slips beneath the radar. But I know that she’s much more attentive than she’s given credit for. Many children born with Down syndrome are reported to have a better social understanding than those born without it. Tone of voice, facial expression, body posture—these are all cues that can easily go undetected when speech is overpowering them. But since children with Down’s are slower to pick up on the words themselves, these cues become critical. These cues are their means of understanding.
This has to play a role in Emily’s sense of people, a sense that is far more fine-tuned than mine. I suppose I like to think that since knowledge and facts can be so hard for her to grasp onto, her emotional intellect is heightened. While her IQ points don’t add up to much and surely falter in comparison to those around her, she senses in the major leagues. Her ability to detect vibes, to avoid bad and attract good, these are not instances of happenstance. Her emotional understanding is her brilliance. I’ve seen it in different moments, most of them unexpected bursts of complete lucidity in a situation where I expected disengagement.
I was 17, leaving the house mid-afternoon to sneak over to my boyfriend’s place. My parents didn’t know he was my boyfriend at the time. And that’s because I didn’t want them to. He was bad for me, and I knew it as well as they did. But tale as old as time, instead of letting it hinder me, I allowed it to entice me. I was leaving the house in a hurry, adjusting the tendrils of my hair in the mirror on our porch as a last-second precaution before making a quick dash to my car. It was sunny, brisk, the transitional period between winter and spring when half-melted snow and half-sprouted daffodils coexist and no one really stops to think about how strange that is. I had my right thumb on the unlock-vehicle button of my keys and my left hand on the door when she stopped me.
How’s Matt? she asked, name-dropping him, sounding genuinely curious, like she were actually concerned with the answer and not just going about it as a formality. It was as if she magically appeared behind me—if she hadn’t said a word, I’d never have known she was there at all.
Uh, he’s good, why? I remember my voice sounding strange, partially because I hadn’t mentioned him in months, partially because I was guiltily hauling ass out of the house to see him.
Just wondering, she finished, exiting just as silently as she entered.
I stood there in utter disbelief, grappling with theory after theory as to why she would possibly question me, in this specific moment, about a boy that, as far as she was concerned, no longer existed in my world. In our world. I had been so adamant about making sure my family was unaware of what went on in the crooks of my cell phone’s inbox; how did Emily know anything? I could have thought about it longer, but I didn’t have time. I shut the door behind me and sped to his house. She never asked about him again.
I can think of a lot of moments in which she’s scared me. Not by trying, not by doing anything even remotely frightening, but kind of just by existing. The moments aren’t exactly ones I can pinpoint. On the contrary, they all blur together in some sort of plethora. I often hear her talking to herself, muttering under her breath, her voice lowering and raising in tone and volume, as if she’s having an argument with someone. Sometimes when I’m home, I’ll walk by her bedroom at night and see her sleeping face down, or to be more specific, sitting upright, but placing her face against her shins like she’s doing a flexibility test in gym class, except in this instance, it’s pitch dark, she’s sound asleep, and the only source of light is the glare from the hallway lamp. My dad once told me about a time when she was sleeping in my parents’ bed and he was lying awake. He told me he was praying, talking to God or Jesus or anyone who was listening to the thoughts running through his head. He didn’t say anything out loud, but Emmy rolled over, looked him right in the face and uttered quietly, I forgive you. He instinctively asked her what she meant by it. She said she didn’t know, rolled back over, and fell asleep.
What gets to me some days is that I know she’s trapped in there. I see a body she was never supposed to have. Stubby little legs, a bit of a pudge to her stomach, wide set eyes that squint too much when she smiles and meaninglessly stare off far too often, teeth that are awkwardly spaced, the small gaps in between them serving as a distraction from her otherwise very pretty face. She’s short, no more than four feet, five inches and still can’t reach the top shelf in the pantry. She’s fair skinned, pale even, especially in comparison with the olived, even-bronzed skin tone held by the rest of my family. She can’t run very fast, or for a very long time. She has extreme obsessions with childlike movies and books. She can’t stay home alone for more than a few hours without getting upset, despite her being 18 years old, a legal adult. She needs help, she needs people, she needs us.
Sometimes when I’m talking to her, the conversation gets to be rather mundane. We can’t seem to get past what she did at school that day or when I’m coming home next or when the next season of Glee is going to be put on Netflix. We can’t breach the surface. When this happens I start to hate things. I start to hate that this world, my world, is one where she was born like this—a person I often feel she was never supposed to be. Sometimes when I ask her questions about how her life is going and her only answer is “Good,” not because she’s being concise but because her life really is just ‘good,’ no better, no worse, I get angry. Then sad. Then angry again. Because it’s not fair that she has to walk the high school halls knowing that none of the boys that she likes will ever ask her on a date, at least not a real one. She won’t make out behind the bleachers or have one of those awful but beautiful ‘how I lost my virginity’ stories. She won’t beg my mom to have sleepovers every weekend or ask for $20 for ‘something important, but I can’t tell you what it is.’ I hate that my world is one in which she won’t have any secrets. I guess she will, but they’ll all be things we already know. Because we know what she does every minute of every day. We know who she’s with, when she’s with them. She can’t drive, she can’t be around people my mother doesn’t know, she can’t lie to my parents because she has no means of doing so. I hate that when our conversations come to a lull, she’ll look at me, just for a split second and I’ll see it—the desire to be someone else. But not someone else, her.
Sometimes I fantasize about an alternate universe in which she was never born exceptional. My mother never had her baby held for testing and she never screamed in the shower and they never took Emily for surgery and she never almost died. She didn’t have heart failure or Down syndrome. I often wish that Emily had been born without her condition. But that’s dangerous ground to tread on. Because holding onto this can cause the worst kind of wondering, homesickness for something that never existed, paths and thoughts and memories that we never walked, never pondered, never experienced. It’s in this backwards, twisted kind of nostalgia that I find myself getting lost from time to time.
When I find my way out, it’s always the same. I’m still conversing with her, still staring at her almost-normal looking face, still listening to her tell me simple details about what she does, feels, thinks. I don’t think my heart hurts because of the life she has to lead. I don’t think I’m distraught or upset. Instead, I am disappointed. Disappointed that no matter what she does or feels or thinks, she can’t be distraught or upset. She can’t wish for another life she never got to have. Because despite the awareness I see in her, she doesn’t know how.
I can remember being small in the summer, sometime after the rocket ship debacle, but before we were old enough to see car rides as tedious instead of adventurous, before being taken places felt like being dragged. Mom would bring us to the classroom where she taught and let us run rampant while she worked. To Emmy and me, it was magic. The empty room felt like a rehearsal space. We could be in school without attending, pretend we were 16 and that we carried backpacks and wore lip gloss. I guess what we were really doing was dreaming.
We’d clap erasers willingly, write the same words over and over again on the board, imagining that we’d somehow misbehaved and this was our punishment. I can remember when ‘detention’ was a glamorous word, a concept I likened to storing a compact mirror in your backpack or having to wear tiny, plastic glasses with barely any prescription to read the fine print in a novel. One day we’d have lockers and cordless phones. We’d talk to boys and maybe even kiss them. We’d be just like our teenage sister or the girls we saw on TV.
Emmy and I reveled in that classroom, on those days, year after year. We planned the way little girls do, idealizing what we’d be when we grew up and knowing that we’d be beautiful and popular, but also kind and intelligent, not the least bit concerned with what people thought because we were too focused on who we wanted to be—who we would be.
I wonder if she remembers.