I’m not sure why the ability to speak is so paramount in defining our humanity. When children meet my daughter Sophie for the first time, or, for that matter, have known her all their lives, they ask, “Why can’t she talk?” When I answer that she has something in her brain that makes it difficult to learn and to talk but that she can understand you and you should just say hello and talk to her, the child who asked the question usually thinks about that for a moment, looks at Sophie, and then runs off to play.

When people ask me what she understands I like to say “everything, I think,” but I am actually not really certain. Without language her personality is blurry, and I am hard put to describe what sort of person she is. My sons, ages five and eight, have bursting personalities. Henry is full of joy and boy energy; his head sweats profusely when he plays and often when he sleeps. He is earnest and speaks sweetly, wishes for race cars and chocolate every day. He loves to win but doesn’t mind when he loses. He is unashamedly affectionate, generous in his hugs. Oliver, on the other hand, refuses to be agreeable, even when he knows it’s in his best interest. He throws around language like weaponry, unafraid to voice anything. He is only quiet with a thumb in his mouth, sucking furiously but still content.

Sophie, on the other hand, can’t be defined by her spoken language. She loves to look up at trees, their swaying movements. She loves to look up at overhead fans, but she isn’t mesmerized by them, she just enjoys them. I know this, because she looks away, back to me, to her food, to something else in the room. She loves to pick up toys that vibrate and hold them to her face, her cheek, in her mouth, seeking input, I suppose, added sensation. I’m not sure what sensation she has left, naturally, given that she has been either drugged or experienced tens of thousands of seizures. I’m not sure what pathways for sensation have managed to survive in her brain. She is insistent on going outside, almost all the time. She’ll lead you to the door wherever she is and stand in front of it, waiting, until you open it and lead her out. When I lift her out of the car and put her on her feet, she’ll turn away from the house and pull me toward the sidewalk, the grass, so that she can stay outside. But she never insists in words on any of this.

At the beach, when she sees the sand, the water, far off, she begins what seems like a magnetized pull toward the water. We laugh, we say the ocean is her home, that she’s a selkie, a mermaid, remembers some kind of freedom and better life in the sea.

When I get frustrated with Sophie, when she has so many little seizures that I snap and think, insanely, that she’s causing them herself, I might shake her too insistently and say, “Stop. Please.” But I’m the one that stops, because her eyes look at me and tell me otherwise.

When we get home from a trip, we take Sophie to her room. She walks in, straight for her bed, a box spring and mattress on the floor. She sits down and pulls her legs up, Indian-style, simultaneously swiveling her hips and scooting sideways and forwards so that she’s sitting completely on the bed. This movement is always exactly the same, a language of relief and comfort. I’ll never forget, once, when we had been away for two weeks and when she walked down the hall to her room and saw it, yellow and lavender, the carpet thick and shaggy, the three windows filtering sunlight, she smiled a real smile, wide and joyful and happy.

My extended family lives all over the east coast, and being thousands of miles away is even less familiar with Sophie than those curious children who ask after her inability to speak. Despite financial and emotional support from both my parents and sisters,   for the most part when we’re all together, Sophie seems, to me, to be an invisible child. She can sit in a room, in her handicapped stroller, for hours and no one really notices her. Her cousins might run back and forth, on their way to the pool, to the beach, to ride bikes or to throw balls outside, another small one might struggle to reach the freezer and yank it open for a popsicle. Sophie sits there as all this activity swirls around her; she might shift in her chair, cross her legs or uncross them. She murmurs her customary “MMMM,” her eyes follow the activity but she will not speak. I can’t blame those children, my sisters, my parents, anyone, for that matter, for not noticing her. They actually do notice her, sometimes, and I’m sure it’s painful. Because she is a reminder of something impossible to understand.

And it’s easy not to talk to someone who can’t talk back. I know that my family loves Sophie, on some level. In particular, my mother is filled with love for her. I know that my mother loves her face, her curls, her sweetness and grace. My father, too, accepts her, has been undyingly supportive and positive over all the years of her struggles. He rejoices in her achievements, however small. He strokes her face, leans over her and kisses her. But, on another level, I suspect that both of them don’t really think of her as a whole person. And I suspect that comes from her lack of language, her inability to reflect back onto others, to define herself in ways that others can understand.

I brought Sophie one afternoon for an appointment with the head of genetics at UCLA. She hadn’t been doing very well and I was on one of my manic rounds to try to figure out what was wrong with her. Although I knew on some level that there wasn’t anything known out there that we hadn’t already tried, I wanted to get that affirmed by Dr. K. I was thinking that maybe there might be something new that they had figured out, a new metabolic or even mitochondrial disorder that Sophie could be tested for. I liked Dr. K because he seemed so intellectual. One visit I had even discussed Kierkegaard with him. He is older, probably close to retirement, tall and thin and wears enormous black-framed spectacles. His lab coat is always buttoned and he’s clean and old-fashioned. When he walked into the examining office that afternoon, he had a group of students and interns and residents with him. About six or so young people. Everyone had clipboards and nodded politely at me. They all seemed to have glossy hair.

I explained why I was there, laughing hopefully that he might tell me something new. We exchanged some pleasantries in addition to my brief explanation of why we had come and what Sophie was recently going through.

Dr. K turned toward his students who were arranged in various casual poses around the tiny room.

“See what a disaster this kid is,” he said and gestured toward Sophie who was sitting in her stroller/wheelchair, silent. “This is what can happen when seizures are uncontrolled,” he finished and turned back toward me.

I was sitting on one of those horrible gray folding chairs that are ranged across hundreds of examining rooms in teaching hospitals. Sophie was diagnosed one day when I was sitting in one of those chairs, nursing her. I shifted in the chair, then, and I know that I shifted there, and grabbed the handle of Sophie’s stroller and placed my hand somewhere on her, where I could reach her and protect her. But the words were out.

Disaster.   He said. Her life is a disaster. And the young, glossy haired students had nodded as if they felt confident and curious, anxious to learn or maybe even scared shitless.

Disaster.

She might as well have been invisible is what I thought. Something clicked shut inside me, that moment, at least toward Dr. K, whom I had liked, even admired. I’d like to say that I protested, that I told him and his innocent posse how little he understood anything, really. That despite her tens of thousands of seizures, her inability to move properly, express herself, read or write or reason normally, she was a person and that her life was full of richness. I’d like to say that I educated those people right there by insisting that Sophie’s life was not a disaster but a feast – that many people loved her, some who barely knew her, that she had two adoring brothers and an extended family of cousins and aunts and uncles, that the babysitters that took care of her were certain that she was special, from God, they said, and I knew that they looked upon it as an honor to care for her. I’d like to say that I told them that Sophie loved the beach and walking outside and music, especially the guitar and piano and that as a good chef’s daughter, truly enjoyed good food, ate eagerly at every meal. That she went to school every day where the community around her rejoiced at her small achievements and where she was faithfully helped by an aide and dedicated teachers.

But I didn’t say any of these things and, in fact, only stormily thought of them all in an incredibly angry dialogue in my head as I left the clinic and Westwood, weeping in frustration as I drove through the traffic and home.

Ever sensitive to the part of Sophie that I knew understood what was said, down to the changed energy in the air, I did manage to reassure Sophie that everything was going to be alright and that I was sorry that I couldn’t help her more. I told her that I loved her, that so many   people loved her and that Dr. K’s   remarks about her life were really just stupid.

In retrospect, as I write, I think that it’s only through expression that we define ourselves and that when you have, for whatever reason, no way to express yourself, you are, in some ways, invisible. In the Western medical world, Sophie is defined by her symptoms which, because they are uncontrolled and largely unknowable and not understood, make her into a disaster.   It’s understandable that most children leave her alone when they find out she can’t talk. Even Sophie’s brothers need encouragement to interact with her sometimes.