A deeply personal essay about ‘a boy it would be an honour to have, and to love’ and his mother, by young writer Chessie Henry.
Every so often, I try to imagine it; skin taut with expectation, a languid vibration in the bottom of your stomach, like a heavy bass-line of baby. From nowhere came the bones; tiny, tenuous – like birds, or walnut shells. Crushable. When did a collection of cells become so real they were fingertips?
I imagine you young: 1990s, padded headband and dungarees. An oversized jumper and inky sea, your dark slash of hair and bare feet. I’m just making memories from old photos – you, in your swimsuit, legs tucked under your chin. At a party, laughing, crumpled over with your hand snapped in a blur on its way to cover your mouth. You, lying in a hammock, only your face and the tops of your knees visible, neck craning around to smile at him, your soon-to-be husband.
He loves you, this boyish father of mine. I have the photo to prove it. You’re on your honeymoon, a year to drive through Africa (Africa, honeymoon: words you can taste; smoky meat, the acrid sting of charcoal and warm cask wine). You’re in the Sahara, a strange orange sea in the early evening light. It ripples away from you, bleak and infinite against a purple sky; you think of the curve of the earth. You’re looking downward, absorbed – shawl wrapped around your head and draped over your shoulder. The vanishing sun carves you cheekbones, casts spiky shadows from your eyelashes. He loves you: how could he not? You are a force, a burning beauty in this vast, brutal landscape of sand.
I imagine you sleeping: three of you. A closeness forming, even before the bump begins to show: Mother, Father, Child. Three in the bed and the little one hovers, imaginary, a ghost of someone who has not yet been born. You swill the names around your mouth: maybe Rufus, a strapping young rugby player with broad shoulders. Or maybe… Freddy, sweet and gentle, playing the guitar on summer evenings, still young enough to hang out with his parents on a Saturday night.
The ghost has to match us – already a Francesca, a Finnian, a Matthew; there can’t really be another F. The R though, it rolls off the tongue – he’ll be Rufus, strong and handsome and distinctive; a solid man, dependable, with a wild streak maybe, loud, and charming. Downstairs, the other three sleep, flushed with dreams and clouding up the glass of their windows with hot breath. The bonds are formed – there’s no going back for you, now.
You say it endlessly – thrilled, overjoyed. Elated, delighted, excited – and you mean it. Yes, the baby is healthy in all the scans. We’re so happy he’s healthy, you say, even though you knew all along that he would be. Of course he is. It all feels like a strange, throbbing dream – another baby, pink and beautiful, with creased skin and eyes like yours, or his, or a relatives’. Your skin stretches, purple marks at your hips, along the curve of your belly. Blue veins fracture vast breasts like war stripes; you are enormous and spectacular. I don’t know if you glow exactly, but when I imagine it I feel like we are all glowing. The light in the kitchen glows, the bathwater glows and we glow, radiant.
You are exhausted, though. The other three hang off your feet, grisly and damp. They bang their heads, refuse their bananas and cry over everything, constantly, like the hum of a fridge but vastly more aggressive. You want to scream, but instead you look here: the swing of their hair, thick, the trusting grip of their hands. You lace up tiny sneakers, you make tiny beds. You love them, mind-blown.
Look at Mummy’s tummy, who’s in there? Another brother, that’s who. A brother: I try to picture him, but he looks like other babies I’ve already seen, pink and small and scrunched. I hold my hand up to the throb of your belly, waiting for proof – a kick, a flip, the watery hum of a baby waiting to be born. Impatience is vague and irritating. When? When will he be here? We never imagine him the way so many people are: weak, cruel, hopeless or depressed. In our heads he is a golden boy, the colour of terracotta that’s been left out in the sun. He’ll burn through life with the strength of his name alone: Rufus, Rufus.
When he comes he is locked in an incubator. There are wires: spilling from his nose and arms like roots, grounding him in this glass gallery. Understanding is slow. I cup my hands against the window; a five year olds’ binoculars ready to observe – what? The translucent eyelids, the pouting O of the lips.
The incubator is a slap that reverberates; you feel it between your ribs. Everyone said you would love him, but you’ve been caught unawares – you don’t know how to love him. He’s not who you thought he was. But no time for that, its time for this; the jargon. Chromosome abnormality, incomplete morphogenesis. Then, labels you recognise: hearing disorders, sight disorders, infertility. An intellectual disability. The words spill across the room like a broken glass.
You call him Down Syndrome, and this small white room fills up with ghosts.
Down Syndrome. Two words, and your heart fissures; cracks raw like chapped lips. It hurts when you smile. Grief is painful and noisy: who cries at the birth of someone they love with all their being, will always love? Do you wish you’d known? The question hovers, unthinkable and yet still thought. If only you’d known, whispers a friend with a pained expression. It hurts, in a way you can’t understand the magnitude of yet.
For what was the alternative? The baby – the would-be Rufus – is tiny. He waits for your influence with a helplessness that is frightening: he is yours to shape. You could study him for hours and almost forget that he wasn’t utterly, miraculously, crazily perfect: something from a dream. A tiny, crushable bird who came from – what? Only love.
This knowledge is a weight, an anchor in a lonely sea with an empty horizon. You ask questions and you are answered; pains and problems mapped out like blue veins on the arm of an uncertain future. You wish you were wiser. You wish you had a direction, a plan. You wish, secretly (in the vulnerable hours of darkness, when you are meant to be sleeping) that this never happened to you. You wish you could go back, to the plastic pregnancy test and the bedroom, where you cried tired, happy tears and kissed your husband. But you don’t. You look at your baby, wearing his older brother’s hand-me-downs. You look at your baby.
How can I explain what you gave me?
I wish I could go back, to the pink medicine smell of the hospital, to the red-rimmed eyes and incongruous, stunned expressions. I would go back, and tell you of a boy so pure and full of love that sometimes you feel like he is a spiritual being: a reminder of a raw emotion that can exist uncomplicated by greed or self-consciousness. I would tell you of this boy: laughing until he can’t breathe, turning switches off at the wall to save power, making cups of tea and Marmite toast. A boy who makes you laugh, staggering out of bed before his eyes have even opened, determined not to miss a thing. A boy it would be an honour to have, and to love.
I’d tell you of days down by the river, miles away from this sad little room. You’re washed in sun, his voice in your ear, calling you to watch him swim.
I would tell you about your other children, who grew so infinitely from having him that you would call them lucky. Lucky. Better. Braver.
You can’t know it yet, not in this moment, where the oily tears are pooling in your collarbone. Not here, where the sympathy cards are stacking up beside your bed, the death of a dream being real enough to warrant flowers.
But I would tell you anyway: The Rufus who shed the wires and incubator of his strange and sad beginning is stronger than you could imagine.
I would tell you of a boy so loved, that it would hurt your heart, and make you cry to think about it.
Chessie Henry lives in Wellington and is currently completing her MA in Creative Writing through the IIML. Although her family are often separated by cities or countries, somehow they always find their way back into her stories.
This content is entirely funded by Flick, New Zealand’s fairest power deal. In the past year, their customers saved $358 on average, which would buy enough nappies for months… and months. Please support us by switching to them right now.
The Bulletin is The Spinoff’s acclaimed, free daily curated digest of all the most important stories from around New Zealand delivered directly to your inbox each morning.