Blue Sky July Read online

  They keep us in at the hospital, Joe and I. We have our own room on Ward 9 with a window, two cabinets, a chair and an aluminum cot with thick steel bars. He lies inside it on a golden fleece, and I lie hunched beside him, stroking his arm and watching his eyelids flutter. The sun dissolves inside a cloud, and the radio plays a requiem for Carolyn, who visits her husband in Ward 26 and wants him to know that he’s loved.

  The sky looks swollen, as if it might break any minute.

  Joe is not as he should be—everyone agrees now. At first they tried medicine, but it just made him worse—he started shaking and screaming.

  His jet-black hair has fallen out.

  He is barely responding.

  The doctor says he’s not sure Joe can see us now, and is concerned he might be fitting. He calls it flailing, the way Joe throws his arms out open wide, and the nurse says it’s not normal, the way Joe swallows, the way he arches back, the way he lifts his eyes.

  These tests these past few days have scanned and tipped and turned and dismantled him—all of us—bit by bit. I lie here wondering about him, this child of mine with bright blue eyes and pale pink skin that is not normal. This child that once tracked perfectly, and now looks beyond me, like someone communing with angels.

  There is a brain scan booked for January.

  I have called my father from the phone box in the corridor.

  “It’s the brain,” I told him, and then he couldn’t speak and I couldn’t speak and we just stayed there like that, just hanging, the line pressed up to his ear, and to mine.

  I have twisted this door handle backward and forward endlessly on the bright white clatter outside this room. And I have now told Alex.

  My parents have been to see me here. William, my brother, came from Chester and Carol, my sister, flew from France, and we’ve all sat here looking out at this sky.

  It’s the doctor that comes to see me now.

  He tells me I should take Joe home until January, and try not to worry. “It’s Christmas,” he says, and then looks in my eyes, puts one arm round my shoulder and pulls my head awkwardly onto his starched white heart.

  The sky still looks swollen.

  As if it might break any minute.

  I don’t know how it’s holding on.

  My father has threaded tiny white lights through the horse-chestnut trees. He says he’s glad we’ve “come home.” We’ve all “come home” this Christmas: my brother’s family, my sister’s family, and Alex, Joe and me.

  Life could pass for normal at The Moorings. Christmas, with all the trimmings. Dad sweeps snow off the drive, Santa comes with far too much; we all have babies. My brother says we shouldn’t talk about the hospital. He says nothing’s for certain until the scan, and we treat his words like gospel—it feels better this way.

  We don’t know how to deal with this. How would we?

  When Alex first came to The Moorings he said it was like meeting the family in the yogurt advert, all grown up. Summers have passed here with little ado, writing poems on the wide cream windowsill of my room looking out at the summerhouse, or looking back from the summerhouse at The Moorings, knee-deep in flowers. William hitting a ball against the garage door, Mum lazing on the terrace with Carol in Rive Gauche and yellow bikinis, dad mowing the lawns as the sun passed over, turning the French windows into glitter.

  We can’t deal with brain scans. We just try to keep things normal, positive, how they’ve always been, and how, somehow, they still will surely be.

  Only now and again, we break the rules.

  Like when the healer comes at six each evening, with her duffel coat and crystals, and holds Joe in the unsettled peace with tears in her eyes.

  Like when we pray in dark corners.

  Like when I sit with my mother in the kitchen, tying up paper prayers into scrolls with red ribbon, to bury in the garden, as if the earth has a soul we can touch at such times.

  They leave the Christmas trees and decorations up in the children’s center long into January. The secretary says it helps morale because it’s always such a bad time of year. The corridors are bright with tinsel, and on the wall in the waiting room there are colorful banners with the words HAPPY NEW YEAR splashed across them.

  The world, as we know it, ends for us here, one clear, crisp Wednesday afternoon in January, with the words severe cerebral palsy. The neurologist puts an X-ray on the wall, turns off the lights, and the moon blots out the sun in the middle of the day.

  A total eclipse.

  It means, the neurologist says, that the brain is damaged. The bit of brain connecting with the muscles. Sometimes, she says, it can mean a leg or an arm is affected, but sometimes, she says, depending on the spot, it’s global.

  We’ve been “unlucky.” There are nine thousand or so muscles connecting to the brain, and it has affected every one of them. It means, the neurologist says, the most extreme disability.

  She tells us plainly that Joe can’t see. That in fact he’ll never

  see, because the passageway is damaged. She says he’ll never learn

  to walk,

  to talk,

  to do anything she can think of.

  “He won’t even know you,” she says into the dark.

  To us, severe cerebral palsy means the world has ended. And there is nothing left to hope for.

  When we come back out into the waiting room, we sit among the tinsel again with Joe in our arms.

  Alex says he wants “to tear the fucking place down,” but he doesn’t.

  We just sit here motionless, waiting for Joe’s medicine, and then we

  gather up our things in silence,

  carry him out to the car,

  and put our bags in the boot.

  I drive us home, stopping for nappies at Tesco. I wander through the aisles and buy the ones with happy babies on a golden packet.

  The checkout girl smiles when I go through the tills. “New baby?” she says.

  I can’t speak.

  Alex has been crying when I get back to the car.

  It’s just as it was before we left for the children’s center. As if we haven’t been away.

  The good luck cards are still up on the mantelpiece and the blue ribbons I forgot to take down are still clinging to the rose tree, though the blue has faded in the rain.

  As we walk back in, there is so little to show for what’s happened.

  A box of medicine,

  a sleeping child,

  and a note that says: A mother’s prayer is the loudest prayer, all screwed

  up in my coat pocket.

  I DON’T know if Joe really does know us. We don’t really know him. This is one of the questions my mother asks me on the phone each day, with the ubiquitous medical books on her knee. “Do you think he has identified you as his mother?” And I say no, I can’t be sure. It seems to make no difference whose arms he lies in. The hospital has put him on drugs for epilepsy and he lies between us motionless most of the time, like a distant dream.

  We don’t know him; we don’t know each other; we don’t know ourselves.

  It’s almost spring in Market Road and we’ve closed down, all of us.

  Generally, we don’t pick up the phone. People call to say they don’t know what to say. We just watch the messages pile up on the answer phone, the distant voices of family and friends repeating over and over like a tired carousel, as if trying the fill the space between us.

  We read the carefully considered cards that come, and put them up where the congratulations used to be. “Be strong,” the new ones say. “Our loving thoughts are with you.”

  This is a private time. Our brand-new boy does not respond, and we sit in his nursery among the toys that hold no interest, staring blankly at the smiling man in the striped balloon as time is cut adrift.

  Alex says I mustn’t blame myself. The doctors have been clear on that—that I’ve done nothing wrong, that there’s noone to blame. But it doesn’t feel that way. It feels like I’ve stolen from
myself, without knowing how, without knowing why.

  Our eyes barely meet now, the pain is so visible, and we circle each other like lonely planets, taking turns to sleep and comfort Joe’s tiny body, seized by muscle cramps, in the night.

  Sometimes Alex stands in the living room and stares at the photographs on the wall as if we’re trapped inside them, as if we’ve been kidnapped into another world.

  Sometimes, when Joe arches back in the night, he holds him with arms and hands turned upward, like an offering to the gods.

  One night Alex sits up all through, staring out at the flat, wet stars, and next morning he says: “It’s like death,” and slams the door. I watch him walk under the small shape of sky trapped between the chimney pots of Market Road and bury his head in the steering wheel of his silver car.

  It is like a death.

  I want to die.

  The physiotherapist says that “perhaps it’s best” that Joe won’t know much. She says it’s too severe when all the muscles are affected. She tells me to turn him sideways to pick him up, roll him over to give him a sense of movement, and lie him on his tummy to encourage him to lift his head. She says we have to help him find his “bottom as a base.” She says “they all” arch backward.

  The speech therapist says we must accept that he won’t speak. His feeding problems are also severe. We use our tongues, lips, and muscles in our mouths with lightning speed to speak. It is, she says, “a very complex matter,” and for him, “it is impossible.”

  The doctor at the eye clinic is a neat woman with swept-back hair and pink-coated lips. I cannot bear her. She says I must accept that he will never see, that I’ve just imagined he once used to. Mothers, she says, “in my position,” often do.

  She gives us so little time and has so little patience with my questions that I’ve started to dress up for our appointments. I wear my navy-blue suit, my court-heeled shoes and I write things down when I see her.

  But I still feel unimportant,

  slightly crazy.

  I’m nothing like the girl I used to be.

  At home, when I lie on the bed

  and feel his feathered breath on my skin,

  I can’t relate these words to him.

  He still looks perfect,

  as innocent as the page,

  before it is written.

  That this sentence is trapped inside his lavender veins

  is inconceivable to me.

  “Unwrite it,” I beg the emptiness.

  “Unwrite it.”

  Alex says we shouldn’t believe what we’ve been told. He says they act like gods, these experts who have read Joe’s destiny and washed their hands of it. He says they’re not omnipotent; that they can’t really know the future.

  He comes home with tales of the unexpected, urban myths about doctors getting it wrong, children raised from oblivion, and he offers them to me like lifebelts.

  He makes the tea, and sometimes takes us out to see healers, who put their hands on Joe’s head for ten minutes, and charge twenty pounds.

  The gardens in Market Road are a mess this time of year. If I stand in the corner of the back bedroom window, I can see all the way along to the corner shop. The perfect lines of drystone walls and square backyards that look as if a storm’s swept through.

  Next door, the gnome has fallen, and the sign that says WELCOME FRIENDS is hanging loose from the holly tree. Christine and Ray have retired now. He has a new shed and the door is banging in the wind. Over the wall, Dave’s long wooden benches are sodden, and over the wall from him, Derek’s underpants drip-dry on a rotary line. Before he lost his mother, it spun round with flowered dresses.

  There’s just a concrete yard with a skip that gets emptied every Friday at the corner shop, and beyond this Chapter, the red brick arts center, where we’d watch late-night movies, Alex and I, before Joe was born.

  The need to heal him is overwhelming.

  Beyond sense and reason.

  Life is like an unrelenting wake behind this window as therapists queue up to try to rouse Joe’s six-month-old body from its sleep and Alex says he doesn’t know if we’re brave to believe in such things or simply foolish. Despair, it seems, makes its own decisions and has needs beyond these thoughts.

  From the French windows in the kitchen, I can’t see beyond our garden. There is a slate-roofed shed, a naked tree and a dozen paper scrolls beneath the soil as the drystone turns itself into an impossible wall of dreams.

  Sam at the corner shop tells me that in Pakistan, a household that has a disabled child is thought to be blessed.

  He says it when I’m buying milk over the counter, Joe in a pale blue papoose on my chest.

  He looks straight into my eyes and says: “You’ve been so lucky, there isn’t the medicine in Pakistan to save kids like him—you’d have lost him.”

  Sam might have saved my life today.

  I guess it’s like that when you’re dying;

  you see a light

  unless you don’t.

  As I walk back home, Sam’s words pierce the cloud between my heart and the sun.

  I hardly know Sam.

  He barely knows me.

  WE DON’T go to the mother-and-baby clubs, Joe and me. I take him to the special nursery out of town and sit in a line of grieving mothers, moving the limbs of our precious bundles to the rehearsed instruction of cheery volunteers.

  I take him to the sensory rooms in the quiet corners of the city, where they play Mozart. The dolphins swim along the walls, the psychedelic bubbles float upward, and it feels as though we’re breathing underwater.

  I take him to the oxygen tanks in Swansea, where we lie in an echoey capsule under a poster of the Teletubbies and I sing nursery rhymes as I hold the black mask to his nose and mouth.

  When my parents come to visit us, they wait patiently among the posters of brain-damaged children, and take it in turns to smile at us through the little round porthole.

  I meet Jac here. He is with his grandmother in the tank next to mine. She says he’s two and a half years old and bursting with life, but can’t move his muscles. She says he lives in a dormer bungalow with his mum and dad in Llanelli and has shoals of silver fish on his bedroom wall.

  Jac hadn’t been able to say anything until one day his grandfather had asked him: “Where’s the sky, Jac?” and he’d looked up; and, then he’d asked, “Where’s the ground?” and Jac had looked down. “Right, Jac,” his grandfather had said, “Up is yes, and down is no.”

  Jac uses his eyes to say everything now.

  It’s a particular time of day, around eight, when they call me. I’m lying in the bath and Alex brings in the phone and they say, “Hi, it’s me, how are yer?” just like they’ve been doing for years.

  I know these voices intimately. I know their triumphs and their misdemeanors; all the details and dramas of their inextricable lives. They’re part of my happiest times, Joanna and Julie, part of my memory of Newcastle University, and just like the dusty libraries, tin mornings and scatterings of pale white butterflies around my bicycle wheels on the banks of the moonlit Tyne, they are part of all things silver. Joanna, with her bright red curls, her ra-ra skirts and problems, and Julie, when she liked The Cure and went out with a punk called Angel, are still part of the prosaic that I set my clock by.

  Last year, when we all got pregnant, life seemed almost choreographed for Joanna, Julie and me. We bobbed about in these bathtubs like synchronized swimmers, with babies floating in our tummies. Closer than ever.

  It’s as if we’ve lost our timing now Julie’s had Freya,

  Joanna’s had Callum,

  and I’ve had Joe.

  I can’t keep up with them.

  Each time I try

  it’s like I’m treading water,

  while they’re powering past me,

  doing butterfly.

  The phone calls are not what they used to be as we fish about for words to connect such private bathtub heavens with such a priv
ate bathtub hell.

  The phone calls in the bath have become excruciating.

  (Alpe d’Huez)

  Through our window at l’Hôtel Alpe d’Huez, the sun shines; the sky is blue and the snow is perfect.

  We have a view of life skiing on soft white alps, and an open-air ice rink where the children skate round and round like music-box dolls.

  We have closed the curtains, Alex and I.

  The whole family’s come out to my sister’s hotel for Easter, and they carry Joe round in their arms while we lie here in the dark and watch shit TV.

  Sometimes they come up with little things to say to me.

  My sister, Carol, says that we’ll all stick together to make life the best it can be for Joe. Mum says she’s still sure that one day he’ll surprise us all.

  When my brother, William, comes to my room, he says I should believe that nothing is impossible.

  William says that on one of the motivation tapes he listens to at work, there is a speech by an American man whose child was born profoundly deaf, and that he taught him to hear by tapping on his spine.

  I like it when he tells me that “nothing is impossible.”

  (Market Road)

  Back home we eat, we don’t sleep, we see the therapists. Alex takes photographs of life in the city, and I watch the washing blow, and the clouds dry out.

  I mix microelements into Joe’s milk, do his exercises and make up his medicines in the kitchen.

  When we sleep together in the afternoons his skin smells like candyfloss and his hair has grown back white as snow.

  A girl from the paper came to check out the gossip this morning and stood on the doorstep asking me questions as her eyes crawled all over him. She asked how I was feeling.

  “It’s every mother’s worst nightmare,” she said.

  Joe’s hand was shaking when she stood there, and for a moment, the briefest moment, I think I tried to hide it underneath my arm.

  When I came back in and closed the door, I thought my heart would break.

  My feelings are raw today, but there is one that cuts them to shreds.

  He is not my nightmare.

  He is my son.

  When the news comes on the radio it holds no meaning. When I look through the windows and the world passes by, it has no meaning.