Being the Sibling of a Special Needs Child, Why I Love Her, and Why I Hate Being One Anyways

My family on our most recent winter break vacation in the Virgin Islands

It took maybe 40 shots to get a picture of my sister looking at the camera and smiling at the same time.

Nobody sees the other 39 shots — not my extended family, not my friends, not even my mom. I keep them in my camera, on my desktop, partly because I don’t delete files often enough and partly because one day I believe that I might get good enough at Photoshop to make her smile in all 40 of them, even if the smile might be identical in every picture.

My sister doesn’t stay focused very easily unless she’s upset about something, in which case she will never let anything go, or she’s watching television. Understandably, she has trouble keeping her eyes on a camera lens long enough for my relatives to get a good shot, especially since they have that Asian habit of counting to three before every. single. shot.

“Just take the picture,” I yell. “You’ll lose the opportunity at two!”

Despite the fact that she isn’t that great at holding eye contact, my little sister Peace loves to be in front of the camera. She was on a special needs cheerleading team, loved to dance in front of my mom, and often loudly requested for a picture of herself in the middle of restaurants, parties, and dinners.

When I’m with my family, who all know about her, it’s funny and endearing. Contrary to popular belief, in spite of her obvious mental disabilities, my sister loves people much more than I do. When she does this in public, or at school however, I feel something under my rib cage twist and coil, prompting me to watch her closely — just in case she does something too outrageous.

I hate the twist and coil. It makes me uncomfortable, and not just in the physical way in which my chest tightens and my hands can’t relax. It reminds me that I hate having a sister with special needs.

And it doesn’t mean that I don’t love her.

My mother was excited to have her second child. She wanted another bright star in her life, a boy or girl for me to play with, a family of four. It’s a trend in my family that each child has one sibling.

Peace was born with an extremely slow capability to learn. Doctors don’t have a name for it. My mom has been to places across the country, seen doctors in tiny corners of faraway states just to put a damn name on it, but to no avail. The evil villain in this story is a ghost. When people ask me what Peace “has,” I just have to shrug and say,

“Nobody knows. She was just born like that.”

I’ve said it enough that it passes through my lips as easily as one would say they had a bagel for breakfast, or that they saw the most recent movie and that it was okay, but nothing special.

The next question that they ask, is whether it’s hard to live with Peace.

What the fuck am I supposed to say to that? Yes? Get real.

The first time that I mentioned that I found it difficult to have Peace as a sister, I was sitting in a McDonald’s booth with two of my friends and my mom, and they all looked at me, horrified. I can remember the immediate cold drape over my back when I realized that I said something so wrong.

How could I complain, the selfish, spoiled child that I was, when my sister was living with this disability every day?

The first thing my father shouted to me when I got home was that I should be ashamed of myself.

You love your family no matter what, is what he said.

I looked into his hard, black eyes with downturned lips and said, “Okay.” I continued walking up the stairs at the same pace.

Oh, it’s not that bad, really. I don’t actually get embarrassed that often — I’m used to it. Yes, it gets easier. She’s actually fun to play with most of the time. It’s not that bad.

A few times, when I was younger, my mom offered to take me to special groups for siblings of special needs kids. Moms aren’t stupid. She knew that it wasn’t exactly easy to live with Peace.

I always rejected those offers. Why would I want to go to a place to stew in my own jealousy, my own shame, my own selfishness about being the normal one?

I didn’t want to think about Peace’s disability more than I had to.

“No thanks, mom. I’m fine. I don’t need do it. Don’t worry about me, I’m okay.”

Regardless of my repeated insistence that I was fine, I fought with my sister and parents a lot. It was usually about regular sibling stuff, like who gets to control the remote, who gets to play with the Nintendo DS, who gets more candy. Over time, I developed a mantra, well rehearsed and predictable.

“When I ask for the remote, and Peace has it, she gets it. When I have it, and she asks for it, she gets it. When will I get it?” I angrily shout at my parents, irritated that, yet again, my parents sided with her in order to avoid her, frankly, more annoying and therefore more convincing tantrums.

You know that Peace doesn’t understand. Let her have the TV. You get so much stuff that she doesn’t. Can’t you be a good older sister and let her have what she wants?

“Fine,” I say. I hide my DS from her sight whenever I play with it. I hoard all of my toys under the bed, where she won’t see them and want them.

Sometimes, Peace has to have intensive physical therapy, or another surgery to fix an abnormal growth pattern, and it’s an ordeal for everybody.

It’s the hardest on her for sure. No matter how hard someone tries to explain things to her, she can’t possibly understand it. All she knows is that mom is leaving, and that scary strangers are about to do things to her. I can’t possibly imagine the fear she’s in.

My mom hears her cries for her to come back, that she left her, that the doctors were mean. She laughs about it in the car, like I can’t see the whiteness on the tops of her knuckles, bone colored against the black leather steering wheel.

Maybe I should have let her have that DS more. I’m horrible. I should work harder to be a good sister.

Peace is super fun to play with, I wasn’t lying about that. She loves to joke around, put on make-up, and dance to any song that’s playing. Coupled with the fact that she’s incredibly social, everybody loves her.

More people know my sister at school than me. When I walk her to the car at three p.m., it seems like everyone is smiling and waving goodbye to her, and she waves back with enthusiasm.

Its a good thing that Peace has friends at school. I hold hands with her and I smile at the people she smiles at. I ask Peace how her day was at school, and in the same tone she always uses, she grins at me with her lopsided teeth from her mouth surgeries and she says, “Great!”

When we play, we never stop laughing. Peace is a goofball. She pretends to fall, she laughs loudly and without reserve, and she will have fun with anyone who wants to have fun with her. At school, Peace is a flirt. She goes up to the boys, some who she’s never met, and she imitates the girls she sees on Disney shows, and they smile at her and say hi, and I feel my chest tighten and coil.

They’re strangers, Peace. You can’t just do that.

They see her do odd things and they laugh like they would as if she was just goofing around. But half of the time, they don’t realize that she thinks that she’s being dead serious. I stand there, hypersensitive, hoping and begging under my nervous laugh that she won’t do anything more. I don’t say anything out loud, because she’s enjoying herself, and my discomfort doesn’t matter.

I hate it when Peace is around our school friends, because I’m not the sister anymore. I’m the warden.

When Peace gets upset, she gets livid.

There’s no in between, there’s no scale. She’ll get just as upset about losing out on the last bag of chips as she will about having to spend a night in a hotel room, unfamiliar and frightening for her because she can’t adjust to new surroundings well. For one, she’ll scream, and for the other, she’ll cry.

The kids at school don’t see Peace when she’s livid.

The ghost only manifests itself when we’re in public in a crowded street, with family, at home. I feel the hot shame burrow into my face when she loudly scoffs at the louder lady at the next table, when she tries to drag my mom by the arm into a store that caught her eye, when she exclaims loudly that I’m dead to her because she heard someone say it on TV once and there’s no possible way she knows the real meaning of what she just said.

I love it when Peace is around our school friends. Because she’ll never be livid.

We’re lucky to live in a good community where everybody is very accepting and tolerant of disabled people. I will thank whoever I need to thank that the kids at school enjoy spending time with Peace, and don’t snicker at her behind their breath.

I know they don’t do this, because I watch everyone.

Nobody messes with my sister. One time, a music teacher from an outside place was using the room Peace usually waits for me in for a vocal lesson. Despite her time slot being over, she sharply yelled at all the kids who went into the room to leave, even though most of them just needed to get their things to go home.

Peace walked into the room to wait for me, and she didn’t understand why she was being told to leave. The woman got increasingly frustrated, and to this day, I can’t believe that she didn’t understand that Peace just didn’t understand either.

I ran into the room, grabbed my sister by the wrist, and glared at both the woman and her student who just stood there silently without doing anything, the idiot, and left. I never saw that woman at school again, and God help her if I catch her doing that ever again.

My mom didn’t know that my sister was disabled until well into her pregnancy, when there were no other options.

I can see the toll that this ghost takes on my family. I can see it in my dad’s patience, and his frightening bursts of anger when that patience often wears thin. I can see it in my habit of shutting myself in my room, bothering nobody, making as little noise as possible. I can see it in my mother’s attempts to get my sister out of bed in the morning for school while putting on her makeup for work, even though she hates getting up for school and puts up a healthy fight every time.

My sister has tea parties outside on the porch and leaves her dolls on the tables, where spiders, ants, and roaches make homes in their hair and on the cups. She takes the toilet paper, creative as she is, and hangs it off of a belt, or a pantyhose, or a shirtsleeve tied around her waist to mimic the flowing drapes of a wedding dress. She does the same in her hair, and when I pull it out, there’s small white fur from the lint of the toilet paper clinging to her short hairs. She can’t have long hair because she hates brushing it, but she loves long hair. She loves to touch my long hair, even though I hate it.

My sister always talks about a boyfriend that doesn’t exist, about a wedding that isn’t scheduled.

Will my sister ever fall in love?

My parents have spent much to raise my sister’s quality of life to just a fraction of what a normal child’s is supposed to be. They’ve shelled out for walking braces, physical therapy, vocal therapy, special doctors in Montana and Missouri and Indiana and Florida and Illinois and New York. They’ve lost sleep to soothe my sister through troubled nights, left movies and dinners early to stop my sister’s crying, dealt with my contempt for being forced to take responsibility for a sibling when none of my friends seemed to need to do the same.

I think about how my sister will live when she’s an adult. I wonder if she’ll ever be able to live alone, or whether my parents will be saddled with a child for the rest of their lives.

I think about how scared my mom and dad are when they realize that, one day, they will die, and my sister will need care.

I think about how I don’t want to take care of her as an adult. I want to live by myself — I don’t even want my own children, let alone someone else’s child.

I think about how my sister deserves to have people.

I love my sister Peace. But my love for her doesn’t change the fact that I wouldn’t wish this on any other family, or any other sibling.

I’m pro-choice. Many people expect me to be otherwise, because I have experienced first hand how having a difficult child still brings immense love into a family. I don’t wish my sister was aborted. I know that, despite the huge arsenal of resources and money my parents have poured into her, her quality of life is barely a sliver of mine.

I joke a lot that if I’m not filthy rich with a great job, I literally have no other life plans.

At some points in my childhood, I’ve wanted to be a singer, an author, a violinist. Some part of me still does.

Computer programming is enjoyable for me. It also has an ever increasing job market and huge stability. If I don’t have enough money, how am I supposed to take care of Peace if my parents die?

Follow your dreams, they say. It’s not all about the money.

I love taking selfies with my sister, especially using the Snapchat face filters that make her giggle.

Everything that I’ve gone through, every burden that I bear, is nothing compared to what my sister carries on her back. I’ve learned, with great effort, that I deserve to have burdens too.