27

A LOT OF BOTH

by Elena Krause

I was five when I found out my brother was different. A friend told me. Different from what? I didn’t know. Different from my friend, for sure. Different from me? I didn’t know that either. Was I different, also? Were we both different?

The friend was at my house, and we were in the backyard, carving an extravagant castle from a mound of muddy sand.

“Somebody should teach TJ how to speak English,” she said as she used a neon pink shovel to dig out a moat for the perimeter. She said it like it was nothing, like she was casually dropping a piano on my head from a ten-story building.

What a weird thing to say, I thought as the heavy sentence landed. My brother did speak English. We had the same parents, and they both spoke English too. Two years my elder, he’d been there for every minute of my life thus far. He was my best friend. If he couldn’t speak English, I’d know that.

Still, something about this comment felt valid even in its absurdity. People often asked me what TJ wanted, what he’d just said, how he felt, what he was doing. From the time I learned to form sentences, I’d talked for both of us. I’d been his interpreter, and I’d never questioned it until now. But really: why would anyone need me to translate English to English?

My friend went into our house to find my mom and let her know about the oversight, and I followed, reeling. I think I expected my mom to set the record straight. Maybe I thought she’d get mad and tell the kid, “No, you’re the one who needs to learn to speak English.”

But my mom wasn’t surprised or angry. She thought it was funny. “Oh, he speaks English,” she laughed. She was probably baking bread or mopping the floor at the time, brushing her bangs away from her face with the back of her hand. I can’t remember exactly what she told the kid, but it had something to do with the fact that my brother had Down syndrome, and that the Down syndrome made it hard for him to speak clearly. Yes, it maybe even sounded like he was speaking a different language.

I was shocked.

I mean, the first part didn’t surprise me at all; I knew what he had. I could’ve told anyone that. It was this thing that people said about him, like it summed him up. But it meant virtually nothing to me at that age. It was just part of his introduction. This is TJ. He wears glasses and has blond hair and Down syndrome. Maybe I thought the Down syndrome had something to do with glasses. A fancy word for bad vision? I wanted glasses too, desperately, but my eyesight was perfect.

THAT WAS THE DAY I LEARNED MY BROTHER WAS different.

That second part though: difficult to speak clearly?

It had never occurred to me. We spent so much time together that communication came easy. Kids need that stuff pointed out to them, I guess.

So that was the day I learned my brother was different. That was also the day I watched my mom tell someone else he was different, watched her smile and laugh and explain without a trace of discomfort or sadness. It was soothing to me, the way she spoke about my brother, the way she named his difference in the same voice she used to say normal, easy words, like hello and good-bye. I wonder now how long it took her to get to that place.

Did she know then that I’d be taking my cues from her? That the way she spoke about my brother’s disabilities would shape the way I saw anyone with disabilities from there on in? That conversation demonstrated that TJ’s differences were not something to be ignored or belittled, but they also weren’t something to focus on and make a big deal about. They were, and that was all.

In the same way, that day was a big deal—and it wasn’t. Life carried on and nothing changed. It was TJ, my best friend and me, his interpreter.

When I was eight, a different friend asked me another heavy question. It was recess, a clear and blindingly white winter day, and my classmates and I were building igloos, chopping out chunks of frozen snow to use as bricks. As we chipped and hacked and dug and stacked, one of the girls glanced over at my brother, right in the thick of the building project with the rest of us.

“Hey,” she said suddenly. “Do you think they’ll ever invent a cure for what TJ has?”

That question, innocent enough, and maybe even meant to be hopeful, bothered me immensely. For years.

I know that for a lot of people, Down syndrome is a disorder, a diagnosis, a life sentence. I know now that my mom cried when she found out, though I didn’t understand why for a long time. But for me, his little sister, it was just a part of who he was. I had a shaky understanding of what makes a person who he or she is, but I felt sure, even at such a young age, that his so-called disorder was a building block at the very base of him, that it was woven right into him on purpose, a thread that connected everything to everything. I was sure that if someone tried to pull that string, he’d just come apart. He wouldn’t be the same person.

From that day forward, I had dreams about pills and needles and doctors, about mom taking him to the hospital and him coming home “cured.” In the dreams, I wouldn’t recognize him. He’d be taller and his face would be thinner and his eyes would be wider and his fingers would be longer and more capable. His tongue would be smaller, and he’d talk the way I did; he wouldn’t need an interpreter. He’d walk in the door, and I’d go to hug him, and he’d treat me the way my best friend’s older brother treated her. He’d say, “Elena, you’re so annoying. Go away.”

I’d wake up crying and feeling guilty. Shouldn’t that dream be a happy one? If this thing, this Down syndrome, was such an affliction, shouldn’t I want him to get better? Was it unloving of me to wish this on him just because I wanted things to stay the way they were? Did I really want him to have to live at home for the rest of his life, never marry, never have kids? Did I want that for my parents?

I struggled with that.

I’ve never really stopped struggling with it. I struggled with it when a friend announced that their baby would be born with that extra chromosome. I struggled with it when my own doctor informed me that my risk of having a child with Down syndrome was high because of its frequency in my family history. I struggle because, to me, Down syndrome isn’t a scary, foreign thing. It’s a distinct and beautiful characteristic of someone I love. And I struggle because I know how it changes the quality of living for the person affected and for his or her caregivers. It comes with other health challenges, sometimes mobility challenges, sometimes extensive hospital stays, surgeries, appointments, heart conditions, thyroid conditions, and so on. Sometimes a life is shorter for it. How could I wish for it, or wish it on anyone? And on the other hand, how could I ever wish for a world without TJ and people like him?

It’s hard, but it’s not just hard. It’s beautiful, but it’s not just beautiful. It’s a lot of both.

But I really do believe that TJ, exactly as he is, is the way he is for a purpose. I believe that about everybody, so why wouldn’t I believe that about him?

To me, everything about him is so intentional and so good. I have seen his effect on the lives of other people in our community, on the other kids at school, on my parents. And mostly, I’ve seen the effect he’s had on me. This is absolute and undeniable.

And that’s what I always wish I could communicate to women who are googling those two words for the first time after a mind-numbing, world-flipping doctor appointment. That’s what I had to remind myself when I thought about the possibility that my own son might have all of those mannerisms and characteristics my brother has. This child is going to be exactly who he is, and it’s not going to be an accident. It’s going to be hard and it’s going to be beautiful, no matter how many chromosomes he’s born with. He’s going to teach me a lot of things, and I’m going to be better for knowing him—exactly the way he is.