Words for Water
On a Sunday in late September I spent the day as I often do, moving shore to shore with Jonah, my seven-year-old son. Days are long, years are short, or so the adage goes, though both can stretch the bounds of the tolerable to me. Parenting is relentless, and mothering, I hope, is working myself out of a job. I see the fruits of that labor in my fifteen-year-old, who that weekend was in Florida with his travel baseball team, without me, just fine. With Jonah, it’s more complicated. He has Down syndrome and Autism and is deaf in one ear, and while my charge is the same — to steward his self-actualization — the how is less clear. He does not slot neatly into the world we’ve written, and this, when I have perspective, is a rare gift that parenting Jonah offers — to see the flimsy fictions we lean on to write ourselves into the world. I am an oral historian, a professor, a lapsed writer, defined by what I do or want to do. What might Jonah do or want? It’s difficult to imagine that question forward, but for now it’s sometimes simple: he wants the water. And so, on weekends, we go. It works. So what is the work of the water, or waters?
For one thing, the water summons. I have hundreds of shots of Jonah bounding down to the lapping edge at Jacob Riis, Pebble Beach, Valentino Pier, limbs akimbo, hurtling to the water’s touch, heedless, hair flapping. At Coney Island in September, the sand was August hot, and he kept his sneakers on right up and into the muddy lip of the Atlantic, its little brown sips lick licking at the muck of Coney gunk, a Coke cap, a hunk of plywood, a Nathan’s wrapper floating like a ray, Jonah’s blue shoes. He runs fast and then stands, stilling once across the threshold, once he’s in. There he sways in place like a cattail, his body stiff and motionful both, planted in the water, moving to its urge. His arms are out at 5 and 7, an inverted V, his fingers splayed wide, starfished. It’s this for a bit and then he sits and moves his arms to 4 and 8, leans back and lifts his legs, rocking on his bum. It’s this sitting, and that standing, and his sudden bright beaming at me, then out to sea, and bursts of “oceeee,” his word for ocean. It’s this for hours, as long as I can stand, and it’s been this way as long as he’s been.
I can’t remember the first time he saw the ocean, only the rock of his body with it since. There is, I think, some kind of communing in his keening, some cellular need apart from time, which doesn’t care for the lines we draw to control it; timelines, as if a ruler will do the trick, as if we rule it and not the other way around. Words are a line I draw too, as if by naming one thing after another, I can know it. Birth. Boy. Ocean. Love.
My first look at him: drawn out of me, wet with his own beginning. Someone’s hands are in his armpits, holding him toward me like an offering or a question. Shoulders slanted. Everything a yellow. Not a sound. From his belly, that hose that holds him to me still. I line these words up around the central image, maybe to protect it or keep it just for me; it’s his, too, or only. His eyes are what I see. That first enduring look is a line stronger than the cord that bound us. I don’t want to go looking for metaphors, but what else are words for? There it is: the silent line between Jonah, inscrutable, and me, worrying at him with words. Between us, the question or answer: how knowable are we, alone together, or is mutual regard the closest we can come?
Our first touch: dried and bound in a thin, pilled blanket and handed over, warm as new bread in my crooked arm, his round face right there. I said it aloud, I remember: His eyes. Don’t they look like he has Down syndrome? I didn’t know, but I did.
His eyes are blueberry gray with galactic hazel streaks. Brushfield spots, I learned, are diagnostic swaths — a touch of brown that marbles the eyes of many with Down syndrome. His calico lashes are so long, they cast shadows. Come summer, his nub nose freckles, bridge to tip. It’s all that sun and beach. So here we are again, at the water.
I don’t remember the first time I took him to the ocean, but I remember when he first signed it. Ocean: make an O with each hand, four fingers to thumb-tip, then bounce them away from you in waves. Write the air to form. It’s November 1, 2015. Jonah is three-and-a-half. We are at Floyd Bennett Field. I drive us to a stretch of shore where we can be unbothered, Jonah rocking in his vestibular ritual at the ocean’s edge, me beside him, crying, probably, as I did for most of that year. His cirrus curls, in the clear air of November, are backlit blond — white as light on water. The sand is wet beige, cold. Dead sea oats, huddled in bunches, keep a rustling watch behind us. I say it over and over, ocean, and show it with my hands. He knows — he shows me, and the cord between us tautens; we talk. It’s enough to take our two hands and make them O, flow them forward and look to each other, knowing. We hold the vast feeling between us in the word, the silent way of saying, a new way of knowing unfolding in me through uncoupling sound from speech, and speech from saying, and saying from being, uncoupling being from meaning.
Is this what the water does, or might do?
Water can access Jonah in some way. “Wateee!” he exclaims, whenever we pass a body of water—the Gowanus or the marsh waters of New Jersey, the dramatic expanse that opens as we round the Belt Parkway, the massive sweep of harbor beneath us as we drive over the Verrazano Bridge, or any little pond catching the light. When we are at the shore and he is in and with big water, it accesses him in a way that I can’t. I cede to the water my sadness—my failure to know my own son—and it carries that weight away, bears it briefly out to sea, then returns it.
Do I want to access Jonah? No.
(Yes. Yes, terribly. How are you, I want to say, how was your day? Did you have a bad dream? Where do you hurt? What happened? How was school? How did you sleep? Where do you want to go? Do you want to hear a joke? Do you want to play Uno? Are you excited for vacation? Do you miss your brother? Did you make any new friends? Does the sun feel good on your skin? Are you too warm? Too cold? Why won’t you wear this hat? What’s your favorite color? Why don’t you like the pasta? Why do you like elevators so much? Where do you want to eat? Is there something in your shoe? Did you get a mosquito bite? Do you remember the tree we used to visit? Do you want to feed the ducks? Isn’t this song funny? Do you want to call Tata? Are you sick of baseball? Do you remember The Jonah Touch? Why do you love the Beatles so much? Is it the repetition? Is it because you can say the words, hello, goodbye, eight days a week? Is it because the melodies have a clarity that stimulates your vestibular system? Don’t you love the word vestibular? What do you feel when you rock back and forth like that? What is it about hangers that you love? What are you looking for in a stick? Why don’t you like that one? Why do you like this one? Is it because it’s the right length? This one’s bumpy, do you like the feel of the bark? Isn’t it funny that bark means tree skin and dog talk? Why do you think that is? Isn’t it funny that pant means leg clothes and dog breathing? Aren’t words funny? Why do you tap tap, is it because you’re nervous? How do you spell Jonah? How do you spell Mommy? Do you listen when I’m talking about you when you’re right there? Which book should we read? Am I right when I tell people that the tap tapping helps you know the edge of your own body? Is your seatbelt too tight? Does it make you feel sad when I cry? Where did that scratch come from, that bruise? Do you know I’m crying out of you, but not because of you? Do you know how much I love you? How can I get out of this parenthetical? Jonah, should we go see the water, the ocean? Jonah, where should we go?)
No.
I want to know that he — what? That he is alive to the world, alive in the world, that he feels alive, that pain is minimized and joy abounds, that he knows pleasure and complexity, is in some singular ongoing dialogue with the world — but those are my terms, and what I really want is for it to be possible for him to make his own, and make them known. All of this is the work that water does: it’s the site where what I want for him — that he be alive to the world in joy, in pleasure — is also where he is, on his own terms.
“We have to be careful about turning what we find into what we want,” Sallie Tisdale warns in her review of Naoki Higashida’s slim memoir, The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism. The book was published in Japan in 2007 and published in English translation in 2013 by novelist David Mitchell and illustrator Keiko Yoshida, who have a son with Autism. Tisdale, herself the parent of an adult with Autism, warns us to wonder when translation may be an act of invention that enacts a parent’s desire to access or understand our nonverbal children. The question of autonomy and authorship in this and other memoirs by nonverbal Autistic people is fraught. It’s a worry stone for me. I wonder how much of what I see in Jonah is a reflection of what I want or my incessant need for meaning-making.
On this I am drawn to “In My Language,” a video by Autistic self-advocate Amanda Baggs. I watch it again and again; I teach it whenever possible. In it, she shows us her own language and then offers a translation in “ours.” Her translation begins over imagery of her fingers toying with a stream of water in a sink:
“The previous part of this video was in my native language. Many people have assumed that when I talk about this being my language, that means that each part of the video must have a symbolic message within it designed for the human mind to interpret. But my language is not about designing words or even visual symbols for people to interpret. It is about being in a constant conversation with every aspect of my environment, reacting physically to all parts of my surroundings. In this part of the video, the water doesn’t symbolize anything. I am just interacting with the water as the water interacts with me. Far from being purposeless, the way that I move is an ongoing response to what is around me. Ironically, the way that I move when responding to everything around me is described as being ‘in a world of my own,’ whereas if I respond with a more limited set of responses and only react to a much more limited part of my surroundings, people claim that I am ‘opening up to true interaction with the world.’”
Maybe water works against symbol, metaphor, or device. Maybe this work is another invitation to release our usual meanings and to free things — objects, other species, elements — from our own attributions, to see their agency and accept with humility our own profound limits. There is a line in “Deaf and Blind” by Lara Vapnyar I keep pinned on my kitchen wall and clipped to the front of my mind. Of the love visible between the narrator’s aunt and her deaf lover, whose sign language the narrator does not know, she writes, “What I felt was pure awe, unburdened by understanding.” Waters are, Jonah is, and I am here at some edge yearning, watching the waters work, with my son.
Object
Coke Cap, Plywood, Nathan’s Wrapper, Jonah’s Blue Shoes
Body of Water
Jamaica Bay
About the Artist
Nicki Pombier is Founding Editor of Underwater New York. More about her work beyond UNY can be found here.