The Words For It
My husband and I are in bed one night when we hear it: a sound like talking, very much like it, in fact, a sound like talking that begins in our older son’s room and travels the hallway to ours. Except that it’s been years since we’ve heard him speak, and so this sound muddles the night, and I sit up, listen harder, as if by straining, I’ll be able, literally, to catch and hold the meaning. This is the way of words, you see: they’re quick.
When Gabriel is born, he arrives with Down Syndrome, his body collapsing around the hands that lift him out, a shock of white-blond hair on his small head. The slow-motion tumult in the room gathers speed when it’s apparent that he can’t breathe, and the doctors withdraw him like a magic trick, a flick of cloth and he’s gone. Nurses in the intensive care unit keep him alive, pin him to the world with their tubes and lights and tough-kind voices. After a week, he rallies, wakes to life, and my husband, Robin, and I are able to bring him home. We settle in with our new son, grateful that he has escaped some of the more onerous characteristics of Down Syndrome, like heart defects. But when he is still a baby, something else blooms, and we’re set on yet another path by a pulsing, charged spot on the diagnostic map: his seizures.
Called Infantile Spasms, they’re almost delicate and ripple out from Gabriel’s brain to his fingertips, resulting in a simple, upward arm motion that looks like wanting to be picked up. The casual gesture hides the force of the seizures, but there’s something subtle, a nuanced look of surprise perhaps, that suggests he’s not controlling it. Still, Robin and I don’t understand, and so he has the seizures in full view for a week before it happens. “It” being the moment reserved perhaps especially for mothers, when we are suddenly — without wanting to be — invested with soul-clanging, irrefutable knowledge. Gabriel is sprawled on my chest when he makes the arm gesture, and at last there are the words for it: involuntary, electric. The ripple that begins in him surges into me, cues cold panic and a call to the pediatrician.
But this story of the slipperiness of words isn’t about the words for seizures, especially, nor the ones for the sleeping baby, electrodes dotting his fine blond hair and a sheath of wires snaking up and back from his head into a quietly whirring machine. Nor the words, for that matter, for another machine that uses pens to scratch the secrets of his brain, a calamitous sketch of brittle spikes, the way you might write in a fury. Nor the words for the pacing, aching parents either; there are none. Nor the ones for an anxiety that extends its tentacles into the future where Gabriel will be not only different from typical children, but also different from children with Down Syndrome.
The words I mean are his. He speaks, and then he doesn’t.
A child’s words are rites of passage, talismans, and also a kind of developmental pact. The expectation is that you’re going to hear many more of them (collect them all! trade them with other parents!). But development in Gabriel plays a trick. At a year, he’s a round happy baby with a bigger spoken vocabulary than his little brother will have at the same age. He says mama, papa, ball, bubble, up and pop, twenty words in all. And because he has Down Syndrome and we anticipate oral-motor issues, I learn to sign. I draw and circle images in the air until he eventually imitates. We sign cookie and more and book until meaning pulses and flickers around us.
The joy of his words, spoken or signed, compounds, and masks at first that he is turning inward. I record what he says in a journal but eventually it becomes apparent that what I’m noting is a decline. The words and signs, every single one, begin over the course of two years to slip away; clutching after them and writing them down does nothing to stop the burgeoning, negating silence. The words become silvery and slippery, fast as fish, then vanish. Silence swells around us, and the sound of his voice, when it does come, reminds us how long it’s been since we’ve heard it.
The spell of special needs lures a litany of therapies, and Gabriel receives all kinds, including, of course, speech therapy. But there is no sorcery for disappearing words, no way to grab them back, no calibration for the weight of them when they do appear. The larger the temporal plain, the more legendary the words when they swagger in. When Gabriel is three and a half, he walks into the bathroom where Robin and I are getting ready for the day and, miming our peppery speech, says with perfect clarity, “fuck.” And more: at four, he sits at the kitchen table with an untouched bowl of fruit, and when rhetorically asked why he hasn’t eaten any of it, responds, “It sucks.”
The last two times that he speaks he is exact, and says “bye” and “all done.” The “bye” happens when he’s six. We’re visiting his grandparents and I’m at the door putting on my coat. Gabriel stands watching me with our relatives, who are arranged in the living room like actors in a tableau. I wave and say “Bye, Gabe — see you in a bit!” and it happens. He steps forward, locking eyes with me, and a spotlight seems to narrow to his place on the stage. “Bye,” he says and even waves, casually, with his right hand, as if he does this all the time. But it’s been close to a year since we’ve heard him speak. Everyone is silent, as though in the presence of an emperor who commands attention with a flick of his hand, his one word. Worlds collide, and a version of Gabriel — the one who speaks — has suddenly made an appearance. He’s here. And there is paralysis all around, because we’ve been through this before — the wondering what to do because we don’t want to frighten away this particular Gabriel, the one who speaks. I get on my knees so he can see that I’m really looking at him, listening, waiting to see if there’s more, but there isn’t. Through my tears, I tell him, “Bye, Gabe, see you in awhile.”
A year later he speaks again, and his father and I are not there to hear it. He’s in his kindergarten class at school. “All done,” announces the teacher, packing things up for the day. Gabriel picks his moment, repeats, “All done!” His classmates are under the impression that he’s never spoken. Jaws go slack in one enormous, synchronized hesitation before the children let out a roar of disbelief, begin jumping and hollering that Gabriel has spoken. One of the staff calls to tell me, “Oh, you won’t believe this, but . . . .”
Oh, but I will. So he says “bye” and “all done,” and it appears that his affliction is really that he’s so goddamn succinct. And the “all done,” as it turns out, is indeed the last clear utterance. He’s now twelve.
When Gabriel is four and a half, I give birth to Sam. The boy who will later speak so loquaciously that I’ll suffer the irony of wanting him to stop, will say not one word for his first two years. It’s as though, arriving in our family, he takes a look around and concludes that this is what you do: baffle everyone in near proximity with your glittering, merry silence. There’s a day when I’m in the kitchen with the two of them, the toddler Sam who says nothing and his six-year-old brother who also says nothing. They sit side by side, blinking their round innocence at me, as if we’re having a committee meeting, a consultation. “One of you,” I tell them, “one of you is going to have to say something…, and I don’t care which one it is.”
This is when I learn another aspect of words, because one day Sam does start speaking. And just when I’m getting used to the sounds, the delight, there comes a day when he slides down the stairs, looking for me. He calls “Mama?” and “Mama?” again. I’m in the kitchen when I take in the shape of the sound: a spiky, energized vibration, a zing in air. I’ve been a mother for years by this point, but it’s the first time I’ve experienced this: one of my children looking for me and calling my name. The sound comes once more through the air, curls itself around me, and I’m so taken with its sparkle, the way it has so completely shed the quotidian, that I don’t want to be found just yet. Each time he calls for me, I become more and more present, and more fragile, until I grow concerned he’ll be worried, and call out, “Sam! I’m in here!” He appears in front of me. “Oh, der you are, Mama!” he sings, and of course, it happens: I’m flung open by a sound.
So Sammy learns to speak and is able then to wonder aloud if we have any treasure chests hidden in the basement or in a closet somewhere and to roll on the ground with laughter after he’s told one of his lame knock-knock jokes. But Gabriel maintains his status quo, and, since Nature abhors a vacuum, he begins to speak in our dreams. Not just Robin’s and my dreams, but those of our friends and family. Even one of Gabriel’s friends at school dreams that a meteor lands and when Gabriel touches it, he is suddenly able to talk; and in the dream world, where the reversal of things affords a kind of sense, he is not merely verbal but eloquent. He speaks in full sentences and intricately woven paragraphs without a trace of slurring or stuttering. It’s as if, in that world, he’s spoken all along. My mind races then with all the questions I want to ask him. But there’s never an answer.
Desire, crackling with potency, becomes the conduit, the way in — because everyone wants something, and so Gabriel’s want of something basic like a toy or a drink eventually draws him out, helping him if not to speak, then to communicate. He learns to use a system called the Picture Exchange Communication System, and assemble pictures of the things he wants on plastic strips, forming “I want” statements. I want pretzels, I want a drink, I want cheese, I want a show. A child using this method learns to make requests first by using a single picture, then constructing sentences. One level involves commenting: I see a blue car; I hear music; I feel angry.
Gabriel is unable to comment. Or perhaps, in the way of astute politicians, prefers not to. But he is a master of I want, able to extend unexpected significance to a plastic strip with pictures. He’ll travel through the house to deliver his message, sometimes throwing the strip to the ground in a huff if we happen to be occupied. One day I’m in the basement when I hear something thwack on the concrete floor beside me: I want a sandwich. I look up to see him standing at the top of the stairs, expectant and shifting from foot to foot. Like any kid, he’s been too lazy to bother coming down. There are moments like these when I wonder about the minuteness of communicating, the ability of the tiniest movement or expression to convey, and how Gabriel might long to be funny or sardonic or ironic. I pick up the plastic strip, and suddenly I understand. “Gabriel!” I start to laugh, “I get it — you yelled!”
Still, his voice. Our holy grail remains his spoken words. He’ll make one of his sounds, a whole note, and vibrating within it will be the glint of meaning; we’ll think we heard papa or hi or yes. In the absence of any obvious intention, we can always imagine, deep down, what he really wanted to say.
I’m in bed one night when I hear it. My husband’s breath against my ear, and beyond that, something like talking. An electronic toy malfunctioning, maybe. I realize that I’m squinting, there in the dark, as if it will make me hear better. I sit up: “What is that? What’s that sound?”
Robin murmurs, “It’s Gabriel . . . . He’s talking. Gabriel’s talking.”
And so he is, talking in his sleep. At age eleven, the silence is broken by a torrent of sound. Not speech exactly, but speech if intention counts; the roll and rhythm of sentences, a pattern familiar but not quite, the way written words in a dream will seem comprehensible for a moment before meaning leaks out. We’re awake, but here too, we experience the confusion of dreams. Perhaps Gabriel speaks for just a few seconds, but to us, caught in the warp of furled bedcovers and the slim light of the hall, he seems to go on for minutes. We haven’t heard him speak for so many years, we gape into the dark, waiting. Perhaps there’s panic also: what could he mean? Somehow a portal has swung wide during sleep, if only for a moment, and yet. And yet, we can’t understand him.
And then it’s over, the torrent stops. The night, the dark, the cool air reassemble. But the quiet dissipates again when another sound forms and travels the hall. Robin and I begin smiling, realizing that Gabriel is laughing, long and hard — one of his belly-laughs. The sound is musical and complex and gathers around us, filling the night with another kind of significance. There is this, at last: something even better than words.
17 replies on “The Words For It”
Thank you. Thank you for writing this. It really touched me. My son has Asperger’s Syndrome, so I know the panic — and the moments of joy too. You are a gifted writer. The image of words like fish will stay with me. God bless you and your sons.
Maria has captured the joy and frustration, the reality of a non-verbal child in a verbal world and brought it to life so well.
I am also a mother of a child who does not speak in words that most would understand. Maria expresses the dreams that all of us have had so well: our child has a “typical” voice. The sentence strips and the interpretation of “yelling” a request for a sandwich are perfect!! The joy; yes-joy; of that “yell” are so well expressed in her writing.
Thank you Maria, for giving all of us parents of children who do not speak for themselves a voice in expressing the joy of a laugh. Laughing is truly a universal language!
This is so beautifully written. You bring the reader along your journey with such clarity and the touches of humor keep it interesting from beginning to its very beautiful and wise end. thank you for sharing this.
Thank you so much for sharing this! Your writing is so beautiful. I can invision it all with each word i read.
It is by no accident that God deposited Gabriel with you and your husband, so his life can be celebrated with love and respect.
Thank you for sharing, some of your precious family moments, with us.
Gail Shawn Burda
For those of us who know and love Gabe, this piece of poetic writing is a way to feel closer to him. Maria, you have real talent. Your story is powerful-sensitive, moving and witty. Laughter is a bond my son and I share that has gotten us through endless challenging times.
Fondly, Beth Morander
Your narrative of Gabriel’s preciousness- of life’s presciousness is exquisitely beautiful.
My heart cried when I read your wonderful, lilting story about Gabriel.
Keep listening for his voice and hold the dream.
Simply stunning. Gabriel is a sweet and lucky child to have a Mama with such astute, lyrical insight. Blessings on your whole family, and for god’s sake please don’t stop writing.
Gorgeous, beautifully written, heartwrenching exploration. And man did I get it, as I have an autistic son for whom words – but more so communication – are hard won.
My 5yo is deaf, and I have a 2yo hearing boy. Sometime a few months ago I was addressed as “mommy” for the first time by both of them. the older boy had signed it plenty– but to hear the word “mommy” spoken. I had to laugh a little in recognition of your waiting to be called mama.
Lovely essay, Maria. I know how cathartic getting it all down on the page can be.
What beautiful writing for such a thing. Thank you.
Thank you for sharing your lovely writing! I especially enjoyed the second half.
Sometimes we read things that we know will stick with us for a long time, re-surfacing in our thoughts for many years. Thank you for sharing one of those lasting pieces of writing.
That was fantastic. I could read a whole book about about these characters.
Yes…a book. So we can all share the beauty, the pain and the wonder that is you and your beautiful family. Thank you for not only sharing, but letting us see.