This essay was recently published in Literary Mama. I’m posting it here as a precursor to my upcoming post about prenatal testing for Down syndrome.
I. In the beginning
You can tell a great deal about people by the way they react when you tell them you’re going to have a retarded child. You might want to try this on a few of your friends, as a kind of litmus test to see what the world looks like to them. Of course, a lot depends on their personal histories — whether they have ever interacted with disabled people and what that interaction was like. But when you control for that factor, a person’s reaction to the news of retardation is usually a distilled manifestation of his or her view of the universe.
â€“- Martha Beck
True, yes? And especially so for the parent herself.
I sit on my bed at home, weary and sore from giving birth three days ago, and from contemplating what lies ahead. Yesterday, Thomas’s six siblings filed two-by-two past his isolette in the NICU. They know he weighs four pounds, three ounces. They know his eyes are grey — the nurse let me turn off the bilirubin light and peel back his little blindfold for a minute or two. But they don’t know his diagnosis.
So Reed and I have planned a family council for the occasion. Tonight, we’ll sit the kids down and tell them there’s something different about their new brother. Then we’ll calmly present simple facts about his condition. As a united front, we’ll project love and acceptance, fortitude and pragmatism. We’ll absorb any tremors of anxiety or fear. They need us to show them the way.
But first I need a script. I open the thick brown envelope of reading material from the geneticist: Down Syndrome Information Packet — English. I scan the xeroxed pages, looking for clues. My son Ben, eleven years old, walks in. I set the papers down, blank side up. My attempt at nonchalance fails. Ben picks up the stack and leafs through. His dark eyebrows lift slightly, then lower. He starts asking questions that can’t wait.
I fumble with the answers.
He’s brave-faced for a few seconds, staring straight ahead with that blank look he uses when he’s getting scolded. Then his countenance falls. His nose turns pink. “There’s another name for that,” he says with a quivering voice. “For Down syndrome. It’s that he’s retarded.” Tears fall. “I love Thomas, but I would rather not have a retarded brother. I’m sorry, Mom, but I just wouldn’t.”
He wipes his nose on the back of his sleeve, then looks at me, brown eyes wide open.
“Mom, do you wish Thomas didn’t have Down syndrome?”
I sit at my desk, staring at my email inbox: a dozen or more messages from friends and family, responding to the birth announcement we sent last week.
I don’t want to read these. I don’t want their cheerful, hollow words about what a special family we are. I used to say those things about other people, about families with disabled members. They’re chosen, I’d say, all the while grateful that we were not.
I scan the list of messages. My eyes fall on the name of my high school friend, Ellen: sister to David, a grown man with DS. We haven’t seen each other much these past twenty years. But I clearly remember her brow, wrinkled with pain, the morning we sat close together, watching David play as a preschooler. “He’s so cute now,” she said, “but what will happen when he grows up?”
Her message reads, in part:
“I have no doubts that you will love and appreciate Thomas as he grows and develops on his own timetable. What a wonderful gift you have been given. I had the opportunity to have David at my house for most of the summer and fell in love with him all over again. (Crying now!) You are beginning on a journey with countless rewards and blessings. Thomas will touch so many lives and educate so many around him. Our kids are different because of David.”
IV. Two faces
The geneticist finds me at Thomas’s bedside in the NICU, nestled amongst a collection of monitors and tubes, bags and wires. I like this guy. He’s warm and pleasant, attentive, sincere. In fact, all the doctors and nurses have shown active interest in our family. They admire the children’s drawings we’ve brought in from home to hang by Thomas’s bed; they ask frequently if I have any questions or concerns. Wonderful people.
My guard is down as the geneticist inquires about Thomas’s progress. He asks about oxygen saturation, cc’s up the NG tube, bilirubin levels. Then, without warning, his face takes on the contorted look that often preceeds a loaded question.
“You seem to be handling this awfully well,” he says. “Too well, in fact. Are you sure you understand the diagnosis?” His eyes deepen with pity.
My gut burns; my cheeks burn. I get it now: They’ve been watching me. The nurses and therapists, residents and specialists. The social worker that’s checked in with me regularly — she’s in on it too. I envision them huddling together in the hallway. Have you seen her cry yet? they ask each other in hushed tones, wondering when I’ll crack.
I wonder the same thing.
V. Cause and effect
From my spot on the couch I can hear my sons’ animated voices rising up the stairwell. Ben and Andrew, the little brother by two years, are in the family room playing consecutive rounds of that “create-an-insult” game beloved by elementary-age boys. The volleys are predictable: Andrew comes up with a modern take on “You stink like rotten eggs,” then Ben counters with something like “You play with dolls.” I consider hoisting myself off the cushion and charging down there to break up the party. Or at least, hollering a few choice words down the stairs.
And then I hear Andrew’s giggling retort. “Oh yeah? Well, you have Down syndrome.”
I stay on the couch.
Minutes later my cheeks are still stinging from the slap of those words. Andrew, such a tender-hearted child. Where did this ugliness come from?
And then I remember what we told the kids in our patched-up attempt at a family council: Thomas will likely take longer than they did to learn certain things — walking, talking, reading. I remember the sober looks on their faces. Our school-age kids have all been stars in their respective classrooms. Each is well above average in academic skills; a couple are deeply gifted. And they know it. They’ve seen themselves finishing work way ahead of the other kids; they’ve heard themselves answering questions that stump the rest of the class. We haven’t pressured them to perform, at least not knowingly, but we have praised them for their talents. Voila! A simple logical inference, obvious to any eight-year-old: if learning quickly is good, learning slowly is bad.
I didn’t see this coming.
I sink deeper into the couch cushion, lightheaded. I wish, desperately, that I could rewind. That I could live a thousand afternoons over again, when the children came home with their tales of aced spelling tests and math triumphs and advanced reading groups. I picture myself holding their report cards and opening my mouth to say the right thing. But I can’t hear the words.
Thomas relaxes in the crook of my arm. Seven weeks old, finally home from the hospital. We’ve cleared a corner of my bedroom and filled it with a bassinet, a rocking chair, and a parade of oxygen tanks. I rock him slowly, taking care not to compress the oxygen tubing which trails to the floor. His eyelids flutter with approaching sleep.
I say this reluctantly, but I must say it: He doesn’t belong here.
I know full well the fight song of parents of children with disabilities: My kid’s just like yours. But I can’t deny the evidence. The presence behind his slanted eyes. The invisible light that shimmers from his lips and fingertips. He is other-worldly, foreign, a stranger to things of this earth. If he were to disappear tomorrow, I would have no right to fuss, no ground to stand on as I petitioned the Universe.
You have no right to demand that he stay, the Universe would say. You know he’s just a traveler.
His expected life span is 30 percent shorter than mine. We are, statistically speaking, destined to depart right around the same time. But I consider myself warned that he may be gone long before that, long before I’ve had my full share of tomorrows.
VII. Quality of life
I stand in the hallway that connects the basement bedrooms, where my three oldest kids sleep. They should be asleep now. Emotional talks can be treacherous at this hour. But after hearing Andrew’s prize put-down, I know the greater risk is not talking. A four-way conversation in which none of us can see the other’s faces. It’s better this way.
“Thomas might not be as talented as you are in reading or math,” I begin. “But he might. Everyone has gifts, things they’re extra good at. ”
I can hear them listening.
“As Thomas grows up we’ll find out what his gifts are. Maybe his gifts won’t have anything to do with schoolwork.” At a loss, I fall back on the stereotypes about people with Down syndrome. “Maybe he’ll be extra cheerful, or helpful, or loving.”
Silence. And then a lone voice, floating out from one of the bedrooms: “You mean, he might be good at the things that really matter?”
Am I sure I understand the diagnosis? Actually, I’m sure I don’t.
My grandmother calls one afternoon. She’s just seen Thomas’s photo, an amazing shot captured by one of the night nurses: He lounges on his side, one hand tucked behind his head, wise eyes open. Tubes and wires hidden under a white drape. Pink, wrinkled perfection.
“He’s darling,” she says. “He doesn’t look like there’s anything wrong with him!”
My mouth opens, then shuts again, dumbfounded. I’m tempted to make a snappy retort, something like, “That’s because there is nothing wrong with him.” Another fight song, one I wish I could sing. But I can’t.
I’ve heard this song pulsating behind the text of the websites and blogs I’ve been reading, written by parents of children with DS. One mother of a child with DS described his extra chromosome as a benign, matter-of-fact part of him, like his ethnicity or his hair color. I thought that was a beautiful way to convey her acceptance. But I couldn’t quite swallow it or claim it for my own. I have nurses visiting the house, support groups hoping I’ll attend. I have a stack of solemn literature on my nightstand. As far as I know there are no special programs in place, no national foundations, no monthly meetings for parents of children with brown hair, or Asian heritage.
I don’t view Thomas’s extra chromosome as an insignificant aspect of his genetic makeup. It holds consequences, some of them welcome, some of them frightening. Like realizing my grandmother is studying my baby’s face for signs of disability, and that she’s rejoicing over finding none. And realizing that I am doing the same.
I’m rocking in my chair next to Thomas’s bassinet. Elizabeth, twelve years old, walks in, just returned from a trip with her church youth group to a care center for the mentally disabled. I freeze when I see her face: pale, empty, shaken.
I immediately snap into wise-counselor mode, asking gentle questions about her experience, attempting some damage control. I can only guess at the connections she has built between what she saw there and what she sees in her future. I tell her it’s natural to feel uncomfortable around people who behave and communicate in ways we’re not used to.
“Did it get easier once you were there for awhile?” I ask, hoping for a happy ending.
She gives a fake half-smile. “Yeah, I guess.”
Then suddenly, her face brightens. She begins to recount a funny story about Ed, one of the young men in the youth group. “It was hilarious, Mom. We were sitting there making these snowmen out of paper plates . . .”
I don’t hear much after that.
After the story is told, and Ed’s wit confirmed, she leaves the room. I sit very still, hands on the curved wooden armrests on my chair, toes pushed into the worn carpet. I can’t blink or swallow. I can barely breathe.
It was a lovely image — awkward teens making crafts with a disabled adults. Lovely. Until I imagined Thomas in the chair next to Ed.
It’s bedtime. I carry Thomas with me as I make my rounds to the children’s bedrooms. Ben’s light is out; he’s curled under a fuzzy blue blanket, waiting for me. I perch on the edge of his bed and lay Thomas across his chest.
“Hi, Thomas,” he croons, rubbing his brother’s back. We sit there in the near-dark, the three of us, silent. Thomas’s little head bobs as he studies Ben’s hairline. Their eyes shine in the faint light coming through the window.
After a few minutes Ben lets out a big sigh of sleepy pleasure. “I’m just SO glad he’s here!” Another big sigh. “I mean, he has a condition, but who cares?”
XI. A Distilled Manifestation
My dear friend Jen and her four kids come for a visit. Her son Jake has autism; he’s ten years old. We’ve been friends for nearly that long. And all this time, I’ve been glad Jake is her child and not mine.
Our children, combined, now number eleven. They clatter downstairs with shouts of laughter, except for Thomas, who’s sleeping in my bedroom. Alone in the living room, Jen and I choose our spots to collapse in — she takes the armchair, I take the couch. Then she looks at me. “How’s it going?” she asks.
I’ve been asked this question dozens of times recently, but I’ve never really answered it. How could I explain the mass of contradictions pulsing in my cells? But here and now, at last, I’m ready to try. I begin slowly, tentatively, discovering my feelings as I speak them.
I don’t get far before a stony truth pushes its way up my throat, demanding air. I have a confession to make.
“When I planned birthday parties, I used to wonder if I needed to get Jake a party favor,” I said. The words, heavy with shame, roll off my tongue and onto my lap. “I’m so sorry.”
Jen is quiet.
“It’s okay,” she says, finally. “Sometimes I’ve wondered the same thing.”
My words flow now, with relief and gratitude. Jen listens while I talk about blessedness, early death, paper-plate snowmen. She understands, with an understanding that comes from treading this bittersweet territory. She nods while I anguish over labels and stereotypes and gifts, given or not. She knows a mother doesn’t love because her child reads, or runs, or smiles, or helps, or does anything at all. A mother loves because her child exists.
“I don’t have a problem sending my other kids out the door in the morning,” Jen says. “But every school day, after Jake gets on the bus, I watch it drive down the street until I can’t see it anymore.”
It’s really not a good time to cry, given the fact that there are ten kids running rampant through the house. Ten kids running and laughing, one kid sleeping. Two moms weeping. Outside, six billion of us doing the same, living and hurting and loving in spite of it all.
None of us belong here. None of us are of this world.