Blue Sky July Read online

  We see an optometrist in Cheltenham now, a small, dark, unassuming man, who doesn’t treat Joe like the woman at the eye clinic. He lies beside him on the floor in his office, studying Joe’s eyes quietly while he strokes his cheek and talks to him. He says he’s not so sure that Joe is blind. He says it seems to be making a difference, the work we do.

  Last week the optometrist thought he saw cataracts in Joe’s eyes when he looked into them from a peculiar sideways angle. He said, if he was right, something could be done to help him after all.

  I made an emergency appointment to see the eye doctor I don’t like at the clinic, but she said he’d given us false hope, this man. She said there were no cataracts.

  When she saw us, I asked her to look into them sideways, just like the man in Cheltenham had done, but she wouldn’t do it. She said she had years of medical expertise behind her opinion, and that I shouldn’t waste my time and money with alternative therapists who don’t.

  Sian says I’ll get over this. She says she knows there’ll be a breakthrough for us one day.

  She’s strong, Sian.

  I will always remember her coat in my life.

  Alex has bought a caravan in a remote bay in West Wales. He takes us there at weekends, all wrapped up in his silver car. He has bought a feather-soft car seat for Joe so that I can sit in the front again. We travel for miles in silence, listening to the sound of each other breathing,

  and then we arrive,

  to wide open sea and sky.

  The place is deserted and the caravan is old and smells of plasticine but Alex has painted it bright inside. He’s put black plastic bags on one bedroom window and screwed in a 240-watt bulb so that it feels like home.

  We thought we’d talk when we came here, Alex and I, but usually we just sit together on the doorstep, watching the sun and the rain and the seagulls drift past.

  Sometimes he carries Joe along the stony beaches on his back, and I follow behind, watching him stop here and there to dangle his feet in the sea.

  In the afternoon, Alex makes sculptures out of the shells and stones I find and I make up fairy tales to pass the time.

  The night drifts by with Joe asleep, between us.

  Alex thinks it’s time to stop the routines now, the ones that “kill us,” as he puts it. He says we’ve lost seasons at the patterning table and in the light room. It’s time to “choose life” again.

  Alex says that when he parks his car in Market Road, he watches me sometimes before he comes in to do the patterning. He says he sees me standing in the center of the upstairs room in tatty clothes, with my head down, turning the rope as Joe flies around me in circles.

  He says I need to join the world again.

  At the caravan this weekend, Alex made me a small stone sculpture which looked like a mother and child, all out of balance, with the baby too big for her arms.

  Its head is made of marcasite stone, and it looks like there are stars in its skull.

  “You can’t hold him forever,” he said when he gave it to me.

  It felt like the end of an era.

  Watching the litter toss itself up Market Road. Watching the sudden downpours wash the cars. Watching the mothers gather in a circle outside the chapel crèche. It’s always the same at three-fifteen, when we go to the window, Joe and me.

  And then suddenly the children will spill out, scattering the puddles and kicking their shoes, and shouting and pointing and begging for sweets, laughing with each other.

  I don’t think Joe sees them, but he listens quietly every day, until the roar disperses in the distance, and the rain is loud again upon the window.

  Today was no different to the others, until the roar died down and I moved to carry him away.

  And then slowly, stiffly and with all the will he could muster, he strained his face toward me, and rendered his very first word.

  “More.”

  “More,” he said.

  It comes in waves—hope—like the light.

  It can come with a single word when you least expect it.

  There is a letter from Gratia on the kitchen table. It says she’s pregnant again—in less than a month!

  My friends Julie and Joanna, my sister Carol, and sister-in-law Lesley are all pregnant again too.

  Suddenly, the whole world has moved on a life.

  (Midsummer 2001)

  THE STEINER nursery in Pontcanna is a gentle affair. There is a regular pace to life behind the gates of the old church hall in Kings Road, and its sprawling, untamed garden.

  The philosophy here is to leave undisturbed the natural rhythms of children, to allow them to dream, to let them Be.

  It feels deeper than an education.

  It is what I would have wanted for him had we been normal, and it is what, after countless sleepless nights, I still want for him now.

  Cath, the founder of this nursery, welcomes us with open arms. She says every child comes with a gift and that Joe’s “inner joy” is very strong.

  The first day I took him he lay motionless among his peers, or stayed in my arms, pushing his head into my thundering heart. Cath wanted him to roll on a mat by the others, but he couldn’t do it, and I couldn’t bear to watch him try.

  One mother said he would teach the other kids to count their blessings and I went to the toilet and cried.

  It’s easier now. He sits on my knee giggling at the children’s words and delights in the meanings they give them. He’s even started to answer them, “yes” and “no.”

  Sometimes they call out and sometimes they forget all about him. Today a girl in a checkered pinafore came up and kissed his cheek and said: “I love you, Joe.”

  He is accepted.

  And to me it is enough.

  At playtime he feels pine cones here, wooden toys and faceless dolls, and during circle time I dangle him by my legs, so that he can move round with the others at eye level.

  Outside he follows them over the logs, up the trees, into the sandpit and hedgerows, just a few steps behind in my arms.

  Cath plays her flute when it’s time to come in, then tells a story and sings a song.

  He’s happy here.

  Sometimes, at the end of the day,

  when sleep has composed his body

  to seem almost normal in my arms,

  I let the mirror swallow us whole,

  assemble a balding calm over

  the day’s reflections,

  contemplate us whole

  and collect us,

  picture-perfect.

  These days pass,

  stinging tears out of glass.

  The oxygen tanks are closed in Swansea. The Charity Commission is appointing a receiver, as “strong evidence suggests” it’s been mismanaged. The Commission has also appointed a receiver and manager to the Rescue Foundation as part of a formal inquiry. People have taken its tins off their shop counters in the high street.

  When I listen to the radio, I hear a doctor say that nine out of ten people who know they are going to have a disabled child choose to abort, which makes me wonder just how many more children like Joe there would be.

  In the papers I read an article that says a man with cerebral palsy was attacked on the streets of Hartlepool. That Alan Powell, 32, was “set upon” by youths and was kicked about in his wheelchair. A neighbor, who did not wish to be named, said youths “regularly pick on people with disabilities.”

  It’s a jungle out there,

  and it spins such a tangled web of emotions as I stand between this

  world and him.

  Between his profound disabilities and his tiny miracles,

  between my courage and my fear,

  and it makes such cobwebs of these days.

  Joe says six words now: More, Mummy, Daddy, yes, no and hiya, but the speech therapist says she cannot understand him and that he’ll need a special board in time.

  He has learned to recognize his colors in the light room, but the pink-lipsticked woman at the e
ye clinic doesn’t appear to believe me.

  He understands my every word, but the doctors don’t seem to think so.

  They don’t know him like I do.

  We went swimming today, to a local hotel where the water was warm. The sun was shining on the water and he laughed and squealed as I dipped him in and out, and spun him round in circles.

  A smiling woman floated up to me. She said she had a friend who had a son like Joe but that she’d “handed him over” to social services because she just couldn’t cope anymore. He was at residential school now and even stayed there in the holidays.

  “It’s sad, isn’t it?” she said. “But they love the water, don’t they?”

  As she spoke to me, I tried to imagine that child for a moment, along with Joe, Jac, Marchant and Ioho Blue—all their different personalities, particular preferences and bedrooms full of fish and angels—all rolled up in one.

  “No,” I answered, as she swam away, “they don’t all like the water.”

  Sue says it happens all the time, this kind of thing. She said a woman stopped to talk to Marchant in the high street once and said she knew all about kids like him because she’d taught at special school.

  Sue says it’s as ridiculous as grouping children who wear red shoes together and that Marchant is going to go to mainstream anyway.

  Such a tangled web of emotions.

  Between the love and the pain,

  and the light and the dark.

  (Lourdes, 3 years)

  The “invalid carriages” clog up the streets in Lourdes and the pavements glitter with bric-a-brac and dazzling displays of holy water.

  It’s hard to take seriously.

  We are here for Joe’s third birthday.

  It’s the hottest day and the air-conditioning broke in the car on the way. My sister was driving us from their hotel near Biarritz, where we’re all on holiday.

  We could barely breathe. We wished we’d stayed by the pool.

  Joe’s body feels hopeless to me this summer. Perhaps it’s just the heat or the lack of things there are to do, or perhaps it’s that his cousins have begun to race and leap and dive about us.

  The churches don’t feel any different at Lourdes. There are just more of them and still the queues for blessings are endless.

  We have had Joe blessed, we have held him up to kiss the Virgin Mary, and have tried to do whatever we’ve been told to do.

  The miracles are few and far between here, but the souvenirs and postcards are memorable. I have one with a poem about love and peace, and one with a made-up Jesus with flowers round his neck, who blows a kiss and gives a wink each time I tip it.

  Driving home it feels like we’ve shared some crazy day trip, Carol and I. The air-conditioning begins to work again, and the car radio tunes itself mysteriously into a program called The Best of British Rock.

  Driving home feels almost spiritual. With the radio up sky high, and our long blond hair and summer dresses fluttering in the wind.

  It’s the little things that make wonder.

  By the end of this summer Joe has started to open his hands more, sometimes now for more or less a minute at a time. He’s started to initiate more. Sometimes I can’t get a word in.

  Today he rolled over.

  Sian and I were lying on either side of him on the playroom floor and he worked out a way to rock his body from one side to the other, back and forth, between the two of us while we clapped and cheered with joy.

  I guess it’s not much for a three-year-old, but these little jerky rolls from side to side are quite breathtaking. They are the first of the physical milestones.

  Sian says it’s “extraordinary,” making new connections between his brain and his muscles, when there were none before.

  Sue says Joe must be a genius. She says that for us it’s the equivalent of trying to hop on one leg and wiggle the third toe along on our left foot, or something like that.

  My mother says perhaps it’s Lourdes that’s helped him. She says maybe I should take him back again.

  I don’t know what to make of it.

  It’s wondrous, I guess,

  but it’s still a long, long way from heaven.

  YEAR FOUR

  (September 11)

  THIS MORNING was storybook sunny and we were out in the garden, Joeski and I, smelling and touching all things green.

  The leaves on the laburnum tree,

  the shed,

  the rosemary.

  Then we lay on the swing seat, cuddled up close under the big blue sky, reading a book called A Fly Went By. The saxophonist’s window was closed today. The garden feels quiet when he’s away.

  We came in at lunchtime, and I watched the news.

  People made phone calls to loved ones on the airplanes that hit the towers in New York.

  Their last words had all been, “I love you.”

  We gave up on our therapies this afternoon, Joeski and I. We just went back to the garden and lay on the swing seat, looking up at the sky.

  “I love you,” I said.

  “Blue,” he said.

  I will always remember that bright blue sky.

  Sometimes looking through the window on these bleak autumnal days, the world looks like it’s lost the will to live in Market Road.

  The flights of birds from emptying trees.

  The fading light,

  the falling leaves.

  And there are times when I wish I could join them.

  Dianne Pretty wants to die. She is confined to a wheelchair and is telling the High Court that the quality of her life is so low that she wants to commit suicide.

  Ramón Sampedro wanted that, too, when he was severely paralyzed in a diving accident in Spain. He became a cause célèbre with his Right to Die campaign.

  Sometimes I wonder if this happy child,

  that smiles and giggles by my side,

  might also want to die one day.

  Sometimes I wonder if

  the time just comes

  when it seems easier that way.

  We’ve been playing cards, Joeski and me. We’ve made up our own special version of Old Maid which involves me showing him the cards, one by one, and then me screaming each time the Old Maid is turned.

  I still believe that he might spot her first, but however many times he tries, he still prefers his Stevie Wonder book, with the big press buttons down the side.

  Perhaps something will come to help Dianne Pretty if she just

  holds on,

  something better than she dreams of,

  something better than oblivion.

  But I guess to her it doesn’t seem that way.

  There are thousands of women Dianne Pretty’s age having face

  lifts in London today, and even their toes shortened in America, to

  make life feel more beautiful,

  a little bit better,

  a little more normal,

  and they keep the doctors more than busy.

  The world’s a topsy-turvy place,

  and despite all his best intentions,

  Superman still can’t

  move a muscle.

  Perhaps one day he will.

  Perhaps Joe will remain as happy as he seems now.

  Perhaps he knows it’s more important to be loved, than cured.

  Winter is a time for letting go.

  I’ve cut back on one patterning, and one light-room session. Judit’s stopped coming.

  With his enormous network of therapies Joe hasn’t had much chance to be small, much of a chance just to Be, and so I’ve made a halfhearted attempt to trim them down, and create more time for him and me.

  We’ve been out visiting the Christmas trees across the city this winter.

  We’ve been in the front pews of churches, singing the carols,

  and the back rows of theaters, shouting at the pantomimes. We’ve

  been to all the glitzy grottoes,

  all the kids’ shows,

  I can
find.

  He has followed the children round the advent spiral at his Steiner

  group,

  with his arched feet resting on my shoes,

  and he has lit his own small candle,

  just the way that they do.

  We’ve developed a new and somewhat eclectic repertoire of games in the house this winter.

  Sometimes he lies on the living room floor and I lie in the hall and we knock the door backward and forward, as if we’re playing tennis, for anything up to an hour.

  Sometimes we lie on the sofa, swirling batons to the trumped-up overtures on Classic FM.

  Sometimes we lie on the bed, with the bright, flashing ball on the long piece of string circling our heads each time he manages to touch it.

  (New Year 2002)

  It’s hard to be sure what Joe’s seeing. Some filmy, diaphanous, cobwebby blur, perhaps, but whatever it is, he has started to scream first now, when the Old Maid card’s turned.

  A specialist we’ve started to see at the university’s center of optometry is quite amazed at this. She thinks he might be doing it by color, but there are two yellowish cards in the Old Maid pack, and they’re both edged in black.

  He is starting to see the shape of things.

  The New Year papers say that Martin Creed has won the Turner Prize in London for his light bulb installation.

  It’s just an empty room which has a light going on and off and off and on, all day long.

  The critics say it means nothing at all, his “work of art,” that it’s a joke—that an electrician could have won it!

  Others find it profound.

  They say it makes them feel self-conscious standing there in the dark.

  To me it speaks of the light inside;

  the light that comes back on,

  and has something to do with a miracle.

  I’ve finished my gold book now, the one with the cradle on the front, intended to record his milestones.

  It suddenly seems strange looking back through these pages; all the tight, concentrated notes, scratchy drawings and massage and tapping techniques I now know by heart.

  All the frantic little check marks at oxygen tanks—they add up to ninety-six in total.

  The early notes are not like my own writing. They look styptic, nervous, as if I’m somehow afraid to slip through the gaps— intended so that someone could take over if I did.