by Nia Wyn
I watch the light fall on the cracks in the Via Dolorosa early in the morning.
I yearn for something to believe in.
I buy a tacky model of a Madonna and child in the Kasbah, and want to come home.
This sadness still swallows me
whole as the moon.
THE CHAIR with belts and buckles arrives in November. It looks like something off death row.
I have to strap him in to feed him now, so we can sit face-to-face, but his head still falls to the side. “Head up, Joe,” I keep on saying. “Come on, now.”
Sometimes I throw a flowered tablecloth over this chair, but when Alex comes home he takes it off again.
He says I must accept that it is part of life now.
Nothing much happens this winter. I take Joe to The Moorings and Alex stays in Cardiff to take pictures of children in their Christmas plays.
The papers are full of them—Mary and Jesus everywhere!
Millenniums swap over—it’s the two-thousandth birthday of Christ—and the world has a party to celebrate. Seventy-five thousand queue up in the rain in Cardiff to leave the twentieth century with the Manic Street Preachers, and the rest of the world lights up the future.
Fireworks everywhere, like rainbows cracking into dust.
I watch them on telly with my mother. “I can’t see a future,” I tell her, and she hugs me like I’m a small girl and says something will come to help, she’s sure of it.
Alex phones to wish me Happy New Year and we sob together outside our parents’ houses in Reading and North Wales.
This winter we both need our mothers.
Some say Christ will return in the New Year. Thousands tread the Bible trails along the Sea of Galilee and queue up, just like him, to be baptized in the river Jordan.
Scientists call it a new age, an era of medical and technological breakthroughs with, as yet, unknown possibilities. They have discovered the blueprint of the human genome and predict they’ll soon be able to cure the incurable.
I listen on and off to those that say God is among us, and those that think they have become Him, but either way, there is still no miracle.
Nothing much happens. Against the neurologist’s orders, I start to reduce Joe’s drugs for epilepsy. I say I need to try—she says I’m mad. Alex tells me to follow my heart, so we give Joe deer horn from a Chinese herbalist and tick off more hours singing echoey songs down in the oxygen tanks.
I light fires in the late afternoon, write my journal and read a book called How to Save Your Own Life.
The corner shop closes for two weeks due to deaths in the family, the water pipes freeze, and the moon passes over the kitchen table.
(Peto Institute, New Year)
Everything seems broken: the broken English of the stern Hungarian conductors and the broken spirit of mothers who bring their broken children here.
We stand in long rows in these therapy rooms, willing our children to crawl along the slatted wooden platforms, and looking on helplessly as they strain and flap like dying fish.
Julie lives just streets from the Peto Institute in her pretty terraced house in Islington, as if somehow it were meant to be. Each morning, she drives round the long way to drop us off when she takes Freya to nursery, and we all sit in the car singing songs and squealing as we go over the speed bumps.
Freya can walk, talk and ask intelligent questions now. She cuddles Joe in the back of the car as if she is his grandmother.
These London mornings have the shape of damp fog—I feel them in my bones.
Each day here I discover more multitudes of things he’ll never do; the complicated steps and fine motor skills that must be mastered when action is no longer automatic. What perfectly coordinated muscle groups it takes to feed ourselves, brush our hair or say a word. There’s so much I haven’t thought about before; so much I take for granted, so many millions of dots to join back up when instinct breaks down.
At night, we stay up late, Julie and I, drinking red wine. Sometimes she cries; sometimes she tries to take my mind off things. She talks a lot about the people that we used to be. The house we shared in London in our twenties and the long-lost men that graced it. There was the beautiful boy from the bookshop and the guy that rode a unicycle in white bloomers and looked like Jesus Christ. There was the millionaire businessman in his navy-blue suit and Jag, and the bloke across the road who drank whisky, played backgammon, and liked to dress up in the afternoons.
I don’t sleep at all at Julie’s house. When she goes to bed I lie awake in her red bedroom, looking at the walls—at her tatty Peruvian bags and Che Guevara poster, at her shelf with neatly labeled boxes, at her neatly labeled life.
The moon looks like the one in Mary Poppins when it comes to
this window,
and before I know it,
it’s morning,
and time to go back over the bumps again.
The therapies are ridiculous, out of control. Alex goes freelance to help me.
The patterning needs two, several times a day, and several times a day, between jobs, he races home to pattern with me.
We lie Joe on a table and move his arms and legs in the patterns babies use to crawl. Over and over again, moving arms and legs the way that babies crawl.
Sometimes we sing Joe nursery rhymes, sometimes we tell him stories, willing him into our world. He rarely shows interest, but we think he smiles more these days, that he’s more with us, perhaps, more in his body. We have noticed his arm doesn’t shake anymore.
Judit arrives at seven-thirty on the dot each morning, our private Peto-trained conductor, who charges fifteen pounds an hour and has her own key. She comes into our room and lifts him out of our bed. We roll toward each other, Alex and I, as she carries him through to the front, opens the blinds and the light stretches down the landing and over the wooden floors into our room.
We listen as we lie here and can now predict her every line. As she lifts his arms above his shoulders she will say: “Open your hand, Joe, hold the glitter stick.” As she moves the purple puppet close to his eyes, she will say: “Look at it, Joe, look at it, lift your head up.” When she is moving his arm in a circle she will sing, “Round and round the wheels go round, round and round the corn is ground.”
Judit ends her strict routine with a butterfly kiss, putting her eye-lash to his cheek and fluttering it.
It is eight-thirty now. She will offer to do the early patterning session with one of us before she leaves.
I tick it off my list,
as she disappears into the day,
like some keeper of dreams.
(18 months)
The neurologist says it doesn’t mean much in the grand scheme of things, but this small scrap of paper that she holds in her hand means everything to us.
It says there is no trace of epilepsy in Joe’s EEG tests.
It has the words: Brainwaves—Normal.
This small scrap of paper says there’s no need for the drugs now, after all.
Perhaps the neurologist just doesn’t know what to say.
Alex says we’ve been wise to follow our hearts.
It is spring. I can see it and feel it, and I know Joe can feel it too.
The daffodils look like paths of sunlight all about the hospital, and the trees are already making leaves outside the physiotherapy window.
Today, when I lay on the floor with him, the wooden toy with bells and mirrors in between us sparking the light, his left arm slowly inched forward, and made contact for the very first time.
I sent an e-mail to my family and friends.
Joe reached out, it said. He has managed to move the muscles in his left arm.
He has a will.
There is a spark.
WE BUILD the light room where the nursery used to be. The lifeless toys look just as they did two years ago, blank and undiscovered, no favorites, as I pack them back up into boxes. The words WELCOME HOME, LITTLE JOE, have still not been rubbed off the bl
ackboard when the man in the striped balloon comes down.
It’s as if nothing’s happened here, as if time has been still.
I put black bin bags on the window and I lie him under the 240-watt bulb that I switch on and off at five-second intervals for three minutes, five times a day.
“Look at the light, Joe,” I say,
“look at the light.”
Then I offer a wordless world to his eyes.
Pictures of the teddy bears and teapots Joanna has painted for him in fluorescent ink, green plastic stars and flashing Christmas-tree lights—anything lurid, everything bright.
Sometimes I use a flashlight and imagine the passageways between his eye and brain are listening to my voice.
“Touch the light,” I whisper,
“touch it.”
The light room is a kind of meditation for me. I have the barest communion with myself here. The statements of “No Visual Response” and “It Is Impossible” echoing through my mind, as I turn the light On,
. . . and off,
. . . and off
. . . and on.
We talk on the phone most days now, Sue and me. Alex calls her my new best friend and tells me I can’t live without her.
Sue says we have to work things out for ourselves, mothers like us, and she stays up all night scrutinizing the world’s sparse offerings of research papers on cerebral palsy, piecing together her own home-spun prescriptions.
Sue says she feels the doctors just aren’t interested and that it’s up to us mothers to find the answer now.
Before Sue had Marchant, she was a doctor of chemistry at the university in Bristol, but now she devotes her life to her four-year-old son who cannot move his muscles. Her salubrious address is like a shrine to him. He has a train that travels the entire downstairs on a sensor wire under the linoleum floors, a full-sized trampoline in his bedroom and a slide from the window into the sunken garden. At night he falls asleep under the transfer she has painted on his wall, an angel in gold ink, tall and wide, the words WHERE DID YOU FIND THE WINGS TO FLY? written at its right-hand side.
Sue encourages me to keep going. She says we can make a difference, no matter what we’re told. She says Marchant is able to speak now with a board of letters if she supports his hand, and that he taps out all kinds of things upon it, sometimes about Manchester United or Bristol City, sometimes about God. She says he likes to go out to the café bars in Clifton, and when she takes him in the afternoon, she pushes him along the pavements in a bright red walking frame on wheels.
She hasn’t even bought a wheelchair.
Sue knows everything there is to know about therapies and equipment. She sends me special toys and catalogs from overseas.
Alex says I talk more to Sue than I do him these days.
He complains he can’t get a look in,
and just can’t reach me anymore.
(May weekend, Paris)
We can hear the bells of Notre Dame in our flat in Paris. They wake us in the morning, Joanna, then Julie, then me.
In the daytime we walk past the Pompidou Center, the Eiffel Tower and over the bridge where Diana died.
We don’t talk about children.
We pass a carnival in the Latin Quarter, a Ferris wheel and an old-fashioned merry-go-round in the park.
I wish I wasn’t depressed,
in one of the most beautiful cities in the world.
(Market Road)
The house is upside down.
The front room is Joe’s therapy space, the nursery a light room and our bedroom is cluttered with equipment. Joe still sleeps between us.
Love revolves around the patterning table, and hobbies gather dust, like signs of a past life that has lost all meaning.
Alex says the red brick art center in Market Road has had dozens of good films this year, and we haven’t seen one.
He says he misses jobs, dashing back and forth across the city to pattern with me. He says he misses life.
We’re like zealots with our rituals and light room this two-thousandth midsummer. Like the early Greeks, who built monuments to gods they didn’t know but hoped would come one day. They’re our testament to hope, whatever the odds against it, and they keep us going. I think, without them, we would fall apart.
My cousin Ffion died this week. She was only twenty-eight. I watched her coffin, covered in sunflowers, carried in from the light to the dark chapel as we sang the Welsh hymns and I remembered us as two small girls, dreaming about how life would work out.
Her mother said it is the greatest loss.
Today I feel so lucky to hold Joe in my arms, and feel his heartbeat next to mine.
My dad says I’m like a small industry arriving at The Moorings this August.
I’ve brought Judit and Joe, mats and bottles, two special chairs and a 240-watt bulb.
We pattern endlessly and turn the back-bedroom window bin-bag black.
Joe turns two.
Alex comes for his birthday, but has to get back.
(Malagny at the end of summer)
From my balcony, the tiny French village of Malagny looks like an island in a sea of colza fields.
It’s like a dream here. The enchanting white farmhouse with its faded blue shutters, the wooden table in the orchard, and Joe in the brown-skinned arms of his cousins. I can see his fallen head as he swings under the heart-shaped leaves of the catalpa tree and hear the merry cries of “Bravo” when he lifts it, momentarily, to the delight of Aurelia, Ambra and Teo, who dance in circles about him.
We pattern outside in the sun most mornings, as the village children walk past and watch us through the gates. Alex sings French nursery rhymes to keep the time and make us laugh.
Sometimes, my sister’s friend Prisca brings her horse down the lane, and takes us round the village on his bare back. We go past the little fountain, past the old school, under the walnut trees and home again. It’s the highlight of Joe’s day, listening out for the clippety-clops to come.
There’s a healer in Chavenoz, an old man who villagers say can perform miracles.
He holds Joe silently in his dark study, which looks out on fields of corn. He says he thinks he’ll walk at the age of three and be a civilisé—an educated man.
My sister puts one hundred francs in a tin on the table when we leave, and says she believes in miracles.
Today, after lunch, Alex and I patterned him on the bed in the cool air of our attic room, moving arms and legs, as the sun fell in streaks through the weather-beaten shutters.
Alex read a book when we’d finished and I put Joe to bed.
I sat for a while, watching him drift into sleep, and when I moved to go, without making a sound he slowly, stiffly, raised one arm and then the other, around my neck . . . and hugged me.
I never knew a hug could mean so much.
Joe knows his mother now.
He feels my love.
It’s like a healing has begun.
YEAR THREE
(Autumn 2000)
WE HAVE developed an extraordinary closeness, Joe and me. Our worlds are inextricable.
My arms move for him, my eyes see for him; I bring the world to him.
We are constantly swapping bodies: using each other. His clenched and knotted muscles imprison him outside my arms, and my fears for him paralyze me outside his.
When I’m despairing, I always turn to him,
to what I can touch and hold.
We are one.
Quite inseparable.
Alex says I’ve created a cocoon around us here in Market Road, weaving the threads of our daily therapies so tightly around our lives that the whole world has disappeared.
He says I’ve lost sight of who I am and what is normal, though
sometimes I catch glimpses
through the windows,
through the glass,
life rushing,
whirling,
past.
We’ve lost an intimacy, Alex and I. We�
�re out of balance. He says I’ve disappeared into a world that he can’t access and that I only think of Joe these days. He says he feels left out, as if he’s running ahead or falling behind, as if we’re journeying without him.
Alex says there’s no love anymore,
no life,
no love life.
Joe is my love life now. I can’t take my mind off him. I wonder what his world is like, what he’s thinking as he lies under the light, or as we hover above him, patterning away.
I wonder how things appear when they can’t be seen and what he experiences when we tap his muscles.
I wonder what he feels,
and what he believes,
when he lies in my arms.
Alex says we should go out together one evening, just us two, but there’s always far too much to do.
When Alex takes Joe out, he carries him high up on his shoulders. He takes him to see all his friends, and even on his photo shoots of businessmen in the city.
He says after all the battles we’ve fought to bring Joe closer to our world, we’re going to make damn sure he’s part of it. He says he’s proud to show him off.
I wish I were more like Alex.
Now I can’t amble through the parks and passersby unnoticed,
I see our reflection everywhere. I see how noone ruffles his hair the
way they do to other children.
I see them look the other way,
I see them stare.
In a world full of eyes, I can see how some strangers love and some strangers hate without even knowing it themselves.
At times I see myself in them.
At times I see myself stare back,
and wonder how I ever got to be at war with my world.
Occasionally, I see myself in shop windows, secretly rearranging his awkward body on my hip, adjusting my posture so that his head will look more upright on my arm. Even I am self-conscious in his presence.
Society separates us. It seems to fear the vulnerable.
In general there are two trains of thought regarding disability. Either it’s an overwhelming tragedy, a life to be lived in suffering and frustration, or—where nothing else can be blamed—it’s sinful. The England soccer manager has just resigned after his declaration that disabled people are paying for deeds in former lives, and in Cardiff, there is a commotion when some youths stand outside a school for special needs, shouting, “sinners,” at the children wheeled onto the buses.