Blue Sky July Read online

  Only Joe has meaning.

  His skin, his smell, his breath

  and I am lost in him.

  The editor called to see how I was doing today, and I listened to the newsroom bustle, just streets away, as if it were a foreign country.

  It’s time for my quarterly column, he told me. I wrote two when I was pregnant, one about intensive care, and now the update’s due. The editor said he’d understand if, things as they are, I wouldn’t want to write it now. He said he wouldn’t worry if he were me.

  I wrote my column today.

  I wrote it because

  if Joe has severe cerebral palsy,

  if he won’t be normal,

  and if there is no cure,

  I want to explore his world with him.

  I want to paint it brighter colors.

  I want to turn the music up.

  I want the world to know he’s special,

  beyond these words.

  (The Rescue Foundation, West Wales)

  Gratia is ten years younger than me, but it doesn’t matter. She grew up in a mansion in Chelsea that had its own cinema and yoga rooms; she doesn’t speak or think or act like me, but it doesn’t matter. We are next-door neighbors on this massage course this May, and when we talk, I think we are as close as strangers can get— when they’re still strangers.

  Gratia does her sun salutations on a mat outside her door in the mornings, a motionless boy called Ioho Blue looking skyward by her side. She tells me it takes nine hours a day to feed him and she is trying to build him up with ghee and Reiki. She says he has never responded, but she thinks he loves her and she loves him.

  Sometimes we don’t say anything at all, Gratia and I. We just sit together on her mat in the mornings,

  massaging Joe and Ioho Blue

  with lavender oil,

  in perfectly balanced strokes.

  My column appeared in the paper this week.

  My life splashed out across a page, my own picture looking back.

  Of all the sob stories, in all the cities, in all the worlds, why did ours have to be this one, I thought to myself as I put it in the bin. I’d choose any over this one.

  Alex says it was like reading a heart cut open, the stuff I wrote, and that everyone’s talking about it.

  The phone has rung all day today. Friends on the paper plan to do a cycle ride to raise money for therapies; people send Web site addresses and the editor offers me a free press trip to Israel, as if I’ve somehow merited a holier land.

  I feel a wave of love and understanding.

  Sometimes I’m in awe of Joe,

  and the light he creates

  out of such dark matter.

  MY BOOK has silver and gold threads entwined on the cover in the shape of a cradle. Alex bought it for me before Joe was born, “to record his milestones.”

  He has not had milestones.

  These delicate pages are fenced in by my detailed analyses of healers, naturopaths and herbalists, and collect themselves now in notes, drawings and long passages of minuscule detail.

  There is a diagram of a new massage technique I do, with arrows scribbled over the limbs and spine of a badly drawn baby, and a note to myself to repeat it twice daily. There is a chart of the purest fish oils, and a six-page list of the things I do to encourage his sight.

  I record the litanies of the physiotherapist as if they’re sacred.

  At the front I have written that I believe Joe has been misdiagnosed, that something “unknown, in some rare Amazonian flower,” or some new approach will unlock him; that “the world is full of undiscovered miracles.”

  At the back are my lists of appointments and homemade healing routines, all covered in check marks before the end of the day.

  Alex says the concentrated passages in this book are like the musings of a novice sorceress or an early religious order. He thinks it’s my way of coping.

  The doctor says I’m in denial.

  He tells me it’s pointless all the hoping I do, and that I’ll save myself a lot of heartache, time and money when I start to accept that a cure is impossible.

  My family has clubbed together to buy me a laptop. They all send messages. When I turn it on it has a screen saver, which my brother has designed especially for us. GO FOR GOLD, ALEX AND NIA, it says— HEAD UP, JOE.

  Joe can’t hold his head up. It flops from side to side and back and forth when he tries, as if it’s some highly complex balancing act requiring impossible strength and skill. He can’t feel his muscles. We have been tapping them for weeks now, but there’s no response, no connection to his brain. We tap, hoping his brain will eventually receive our messages. We tap from his arms to his legs, from his cheekbones to his toes.

  The doctors say they’ve never heard of tapping. They also say there’s no improvement; that nothing’s changed, and all second opinions are exactly the same.

  At Great Ormond Street, the ophthalmologist has wired him up to a computer to prove that his visual pathways don’t work. She says I must accept now that it is quite impossible for him to see. Joanna was with me that day. She was showing Callum the bright and shiny toys in reception when I came out, and we walked back down the corridors to the main entrance together in silence. She drove us to Paddington Station and waved us off, and I sat among the blank faces of commuters, tapping the muscles round his blue eyes, red lips and clenched white fists as we traveled back home.

  I took him to the chapel across the road today. The place was drafty and empty and the sun was streaming in when I held him up to the fractured light of a stained glass window.

  Today,

  for the very first time,

  I saw the way he seemed to prefer

  to lift his face to the wind.

  The sun is weak, like a ghost of itself, but summer’s here. Joe lies on his golden fleece by the French doors in the kitchen, listening to its music.

  The neighbors potter, ice-cream vans pass, the saxophonist moves on to scales.

  Alex and I have done a Reiki course and have certificates to channel healing this summer. I sit and watch him put his hands on Joe’s head in the evenings. He says he really feels like he’s doing something; but when I try I don’t feel a thing.

  We drive three times a week to see a cranial osteopath in Cirencester who charges thirty pounds a session and holds Joe’s head in his hands for eight minutes before we drive back home again. It takes one and a half hours there and one and a half hours back, and we squeeze it in between all the other appointments.

  Alex drove home slowly today. He kept stopping to take calls on his mobile phone and then stopping just to look at the scenery. He stopped at a poppy field just before the motorway and decided to take photographs.

  I carried Joe into the middle of them and held him up above my head.

  Driving home, Alex said the light was sharper than usual, and that Joe and I had looked like one single snowdrop in a sea of fire.

  We’ve lost weight, Alex and I. We noticed it tonight when we sat in our old Victorian bathtub, washing each other with Simple soap as the water lapped around us.

  I told him I wished we were on an island, him, Joe and me, far away

  from everything,

  and he pulled me in tight

  and said that we already were.

  We have his party at The Moorings. My mother bakes a cake, we sing “Happy Birthday” and I smile so hard my face hurts. Alex takes pictures in the garden, and I prop up Joe’s head on my shoulder.

  He takes dozens to get one that looks just right, just as I really want it—normal.

  My school friend Angela comes, bringing champagne. The birthday cards have glitter, music and things to feel. Joanna sends cot covers, homemade in the boldest stripes, to encourage his eyes.

  My father buys a musical bear, which sings happy songs when you press its tummy, and sits Joe on his knee, pressing it for him. My mother says he went out twice by himself to find something appropriate, something just right.
/>   It’s a year since Joe was born and the winter-white rooms of the hospital still feel like tombstones in the graveyard of my heart.

  Before she goes to bed, my mother sits with me in the summerhouse, watching the sun set. She says her pain is “double,” because she feels it for Joe and she feels it for me. She sits with me until the lights go out on Bishopswood Road and there is nothing to see but the empty black space between the stars.

  My mother still can’t believe that this has happened. She says we’ve always been so lucky, and that she thought I, in particular, had the luck of the gods. William had a rough start in hospital, Carol took life seriously, but I had serendipity, she said, the like of which she’d never known.

  Life just worked out for me without much effort on my part. Blessings fell like windfalls; boyfriends arrived like mail, exams were scraped through. I was the one she never worried for.

  I still can’t believe it either.

  Joe and Alex, all tucked up in my childhood bedroom,

  as I drain the dregs of the Moët,

  and watch the sky break over the pale pink mountain.

  YEAR TWO

  JOE IS a beautiful child. He transmits gentle epiphanies as I carry him round in my arms like a broken Buddha or a broken doll.

  I walk with him every day as autumn steals the last of his first summer and the burnished leaves fall about our heads in Pontcanna Fields.

  As I nestle him to my chest in his brown, furry coat, we look no different to the snuggled silhouettes of all the other mothers meandering away these mornings in the city’s peeling parks, but we speak a different language in our skin. His fallen head rests on my heart and he knows its unsteady beat fading in and out as we pass the gray salty waters of the Taff, the quiet cathedral and the merry-go-round in Queen Street twirling the last rides of the holidays.

  He gives the world an unbearable intensity.

  His blindness gives me new eyes to see, new ears to listen to the languages of nesting birds and echoing arcades, new understanding.

  Pain mingles with a profound sense of beauty. Carrying him makes everything burn brighter.

  As we pass the running children who hold up their heads so easily, I realize miracles are so commonplace we barely recognize them anymore, and near the circles of mothers anxiously comparing milestones at the school gates, I see how we live in a time where normal is never enough, and we are never full.

  Joe gives me insights I could never have understood without him, and he gives me heartbreak.

  To separate these two responses would be impossible. He is equally beautiful and terrifying.

  When Gratia brings Ioho Blue to Market Road, she hangs crystals over their beds, and tells me we have wise old spirits in our arms.

  She says it’s probably the last time for their souls on this earth, and that we have been chosen to care for them.

  I like to listen to Gratia and the mystical messages she brings me from her yoga trips to Egypt. We can hide away for days together in our own special dimension, imagining something good is in store for our baby boys. Imagining sometime, somewhere, something good will happen.

  When Joanna and Julie come to visit, they watch Callum and Freya toddle about in the back garden, shouting and splashing in the puddles, while I massage Joe on the kitchen table, behind them.

  Between the Menai Bridge in Anglesey and the Severn Bridge in Bristol, I pass through patchwork quilts of mountains, rivers, valleys, seas and streams. The night editor and the boys from the paper look like different men in their shorts and T-shirts, riding their bikes between the sea and sky.

  My childhood friend Keith Simpson has organized houses and hostels, bunk beds and floors, along this route, and friends turn up with bright sunny smiles in rainy Welsh towns. Julie drives one of the breakdown trucks and I drive the other, and we weave our way along, waving to each other as the boys stretch and sail and climb before us.

  And the rain and the sun swap places.

  Alex says sponsor sheets are dropping through the letterbox in Market Road covered with the signatures of people we’ve never met. He says there’s a list of names from a school in France, an office in Chester, and the herb garden in Redcliffe Bay, Australia, grown by Auntie Rosie and her pensioner friends.

  I think of this when I’m driving my truck

  between these bridges,

  watching people climb mountains,

  and show depths

  I never knew they had.

  The coffee table in the living room is full of clutter.

  There is a book about cerebral palsy and the small rubber toothbrush that I use to massage the inside of Joe’s mouth.

  There’s the deep red lipstick and sparkly wig I put on to try to get him to look at me, and the bright pink feather I use to coax open his clenched white fists.

  There are the photographs of his first birthday. His eyes look slightly crossed. I hadn’t realized.

  There is the small brown bottle of the homeopathic pills I give him on the hour, a cloth to wipe up dribble, and my little gold-and-silver book where I’ve lodged a note to myself to call the physio, and ticked off the day’s routines.

  There is also the envelope from the hard-nosed newsman I used to sit by on the paper. He’s sent me pages of carefully selected information about the RNIB, and buried in the black-and-white print is a line that says: “Blind children see with their hearts.”

  Alex says there’s no time or space for anything in this house anymore.

  He says before Joe was born he used to put his feet up on this table, and there’s nowhere to put his feet up now.

  There are so many of us, I had not known, and yet I know so many now. I meet them in the quieter corridors of hospitals, the Scope centers and the RNIB, these mothers who have kids like Joe, and who are, I guess, like me.

  There was nothing to unite us before we got here, no age, no class or story, but now we’re here we’re all the same, circling these places like dislocated puppets as the therapists pull at our strings, sharing the stuff of our souls, round the coffee machines.

  We’re ghosts of ourselves by the time we get here. A long way off the beaten track, and in each and every one of them, I see my own small reflection staring back.

  It is another world, this network that collects us from the mainstream.

  Behind closed curtains, behind closed doors,

  there is an unseen planet,

  hidden away in society’s pockets,

  and slowly revolving at its core.

  (The Rescue Foundation, West Wales)

  Gratia hasn’t been invited back to the Rescue Foundation. The charity does not think Ioho Blue can benefit from its courses, so she sits at home in Brighton, wondering what to do. The rest of us have not had miracles but have all returned to this row of stone cottages, nonetheless, to try again.

  A well-dressed woman at the center says the course will help our muscle-tapping techniques and explain where we may be going wrong. She gives us each a photocopied book with new exercises to do, which we treat like the Holy Grail.

  The mother next door, whose three-year-old son bangs his head on the wall eight to ten times a day, says nothing’s really changed since she came before, but that she still has faith it will.

  Sarah, two doors away, says her eight-year-old still rocks backward and forward and screams constantly, but this place is her last hope.

  The girl who lives in the cottage at the end tells me she’ll have to give up her job as a psychologist if she doesn’t cure her “brain-damaged baby,” and so she had no option but to come. She’s having a breakdown, running in and out of the therapy sessions, instructing her husband to make notes and feed the baby, while she calls her office on her mobile phone.

  When my mother comes to stay with me here she says this single row of stone cottages is the most desperate place on earth she’s ever been.

  When Joanna and Julie come, with their arms full of food and wine and healthy babies, they say they just can’t be
lieve that we’re all here.

  The physiotherapy room at the hospital in Cardiff is large, white and sharp with morning. I lie on the floor with Joe and there is a wooden toy with bells and mirrors in between us, sparking the white light.

  He doesn’t reach out. He never does.

  Two other children are waiting; one has a bowleg, the other has Down’s. The wind undresses the trees in the window, the phone rings and stops again, and the receptionist reads a headline in the Western Mail that says: “Life is Better than Ever.”

  These appointments are grueling affairs. I’m here almost daily, watching the portage teacher try to interest him, the physio roll him over and the speech therapist battle to coax out a word. She gives him a toy and takes it away again, saying: “More, more, more, more, say more and you can have it back.” But he doesn’t say or do anything, and she says she has nothing to work with, that there’s “no initiative.”

  In Market Road, I write my journal and trawl the World Wide Web as far as the borderline clinics in Mexico, where only the desperate go.

  The neurologist won’t reduce the drugs—I tell her I have a hunch he’d do better without them. But she says it’s out of the question— ridiculous—that he’ll always need them.

  The doctor says that I’m depressed. He says maybe I should have another baby, but I don’t want another baby.

  I just want Joe.

  Sometimes, in the afternoon, I send e-mails to William, who sends them back in minutes from his office in Chester. Sometimes, in the dead of night, I send e-mails to Carol, who writes back next morning from her farmhouse in France, where the sun still shines and her three blond children dance about her like a snowstorm.

  The sky is bruised in Market Road today.

  I want to know my son.

  The clouds are as black

  as they come.

  I go to Israel in October. I cross the desert in a Land Rover, listening to the idle chitchat of kitten-heeled beauty editors. I watch the Bedouin tents float by in the haze, and write a travel piece for the paper.

  I lie naked in the Dead Sea as the sky turns maraschino.

  I bury two prayers in the Wailing Wall in Jerusalem and pass the site where the Jews revere Solomon, and the Muslims say Muhammad ascended into heaven.