by Nia Wyn
I guess it’s been a kind of odyssey, this book for me. A ritual begun in fear that has somehow come to love.
The scrawl has a lighter spirit about it toward the end; there’s more
space between the lines, and the sentences lift at the edges.
I think this is how belief looks,
before we know what to call it.
JOE IS somewhere in his fourth spring when I make a tree of blessings. I buy a lone silver birch twig that’s been in the flower shop since Christmas, and write out small white cards to hang on its branches.
Life is changing, and the saxophonist plays melodies, which float from his window to mine as I scribble in gold ink at the kitchen table.
Together, strung along the branches, these blessings are so real to me. Each impossible step turned possible.
The day “the epilepsy” disappeared and he began to smile again.
The day he rolled over, and the day he squinted at the sunshine after
the countless days when he did not.
The day he saw Old Maid.
The day he hugged me.
Joe’s blessings have been full of crossings over,
blind to seeing,
silent to speaking,
and from a place where he couldn’t communicate his wants or
fears, to a life where he now can.
My tree gives me another sense of reality.
It pleases me to decorate its branches,
and pass it on the dresser in the kitchen,
all dressed up with snow-white cards.
His walking frame is red and made of iron, with belts and buckles at the chest and hip, and two ready-made shoes that dangle at the end of two jointed bars of steel, skillfully prompting his step.
It fits him fine.
We took it to Steiner today and I nudged him forward down the incline toward the children.
He looked like a Renaissance prince tiptoeing among them under
the trees,
like the uncommon butterfly,
released.
I wrote out another card tonight.
Joe walked, it said.
I’ve hung it on my tree of blessings,
so that it’s there to meet me,
when I come down the stairs tomorrow morning.
THE CATARACTS are diagnosed in May. I watch the pink lips of the eye doctor tell me what I told her a year ago. I wait for her apology but it does not come. She says Joe has been a difficult child to assess, and that it was difficult to get a good look at him.
The cataracts are dense now apparently and right over the center of both eyes. After three years of telling us he’s blind, she just says she “seems to have been mistaken.”
The optometrist in Cheltenham, whose letter she dismissed, says we’ve lost critical time.
We have been assigned a new eye doctor at the clinic now who is kind and courteous. He thinks Joe’s visual problems are much more likely to do with the messages in the brain than the eye itself, so it’s unlikely it will really make much difference.
“But still,” he says, “no doubt,
it’s better that they’re out!”
The new doctor has scheduled the operation as an emergency, and his predecessor has completely disappeared from view.
It feels like forever, when they take him up to the operating room, but it’s just an hour on the clock on the ward. I know there can’t be a miracle when he opens his eyes, but it’s one less barrier, one less thing to fight against.
There is another boy in our corner of Ward 11, in the next bed to ours. His name is David and he’s almost three. David stares at the ceiling, arching backward all the time, and has had a tube put in his stomach to help him feed.
His foster mother, Jane, sits calmly by his bedside in a neat suit, and wears a neat gray bob around her face. When David cries and shudders, she rearranges him gently, one way, then the other, and kisses his forehead. He’s totally blind, has severe cerebral palsy, severe epilepsy and won’t get any better, Jane tells me. She says his mother couldn’t cope, and that she has fostered kids like him for years.
We’ve talked a lot, Jane and I, in this corner on Ward 11. Early this morning, when Joe was walking round in the frame that prompts his step, shouting “hiya” at the nurses and bumping into everything, she said he showed such a love of life that it was hard to imagine he’d once been like David.
She made notes about the fish oils and the treatments I give him, and said she’d discuss it with his mother.
His mother came in this afternoon. She was here for the very same hour that Joe was up in the operating room and she sat on David’s bed, kicking her legs in jeans and trainers.
She picked him up for a moment before she left, buried her face in his neck and clasped him tightly to her chest, before she put him down again.
Jane says his mother loves him so much, she simply cannot bear it.
Mothers who leave and mothers who don’t,
we’re all the same.
Joe has glasses. Big, round, National Health, plastic glasses. I am so proud of them.
We had our picture taken in the photograph booth in Woolworth’s this week. He sat on my knee, laughing his head off, shouting, “More, more, again peas,” when the light flashed on. And I was laughing too.
This is my favorite picture.
Shaggy blond hair, cheeky smile, rosy cheeks, head only slightly tilted on my shoulder and my shoulder only slightly forward to support it. Glasses, big, round and shiny, just like Harry Potter.
I love it with all my heart.
Our new eye doctor phoned today to say the second cataract can come out soon, and that he’ll also try to correct Joe’s squint next year.
It’s funny now I look at this picture.
The squint’s really quite bad, I suppose,
and yet I hardly even notice it now.
When Gratia comes to Market Road she brings Iona. Her brand-new baby girl, textbook in every way.
She says life is totally different with Iona, that there’s no comparison to last time round.
We hang out just like we used to, Gratia and I. About the house or around the therapy rooms of Joe’s appointments, but I already see the different world she lives in.
I can see how easy and how safe it is when therapy’s not needed. I can sense how it feels, when people stop to admire her baby on the street.
I see Joanna with Callum and Jude these days, and Julie with Freya and Clara. Sometimes Julie sends Joe tapes of Freya telling stories with Clara gurgling in the background.
I know how nice life can be with perfect babies.
I guess I just notice it more, when I’m with Gratia.
We go out more now, Joeski and me. We make special outings with the built-up walker, and the built-up bike that I pull along behind me on a pole.
The staring seems less these days, but maybe I’ve just got used to it.
It matters less, perhaps—it’s normal.
I take him to the supermarket, where we play in the aisles of light and space and mirrors, and he learns to tell my face from the crowd. We spend time with the fruit and veg, and get lost in the aromas of pineapples, as the world rushes past us filling its trolleys.
We go to the red brick art center on the corner of Market Road to see the exhibitions.
And we go to the park,
both parks,
again.
Sometimes he likes to touch the trees or smell the flowers when we’re walking side by side each other at snail’s pace.
Sometimes he likes to hang around outside the playground, where the other kids gather and life’s all swings and roundabouts.
I am beyond the staring now. I’ve lost my fear of it and have found a new sense of calm in our small private rituals in the wide-open spaces of this city.
Today when we reached the playground I took him inside and he sat on my knee on the swing and the roundabout, then climbed in my arms up the slide.
I was o
ut of breath when I got him to the top, and when I looked down I saw a sea of upturned heads, all looking back toward our piece of sky.
Today I discovered that fear
comes second
to love.
(Malagny, Summer 2002)
My sister has set the table in the orchard, and tied balloons to the trees. The air smells of roses and the sun lies in streaks across the table.
The damsons can hardly bear their own weight and fall here and there, at intervals, with a thud on the dry ground.
His fourth birthday is the stillest of days.
Malagny is taking its siesta; Carol and her baby Louis, Aurelia, Ambra, Teo and Joe, all daydreaming inside the blue-and-white farmhouse.
It’s been magical here this summer. Early in the morning, we hear the song of the tiny brown chaffinch who comes to sit at our windowsill, and then comes the roar of his cousins who fly through the door and bounce about us on the bed.
They’ve got closer to him now. I can see it in the way they are with him, and the things they tell him when they’re walking by his side. I see it in the way they battle to understand what he battles to tell them. I see it in the way they make each other laugh.
Ambra says, “He’s a real boy now, a real boy,” and tells us that on the trampoline, he’s been telling her: “I wan a e ka-ga-oo,” when he wants her to jump with him like a kangaroo.
Carol says Joe’s a different child altogether to the boy we took to Chavenoz. She takes him off to Shoppee in her soft-top yellow sports car, and buys him expensive French treats.
He sits in the back and holds his arms out like they’re wings, snow-white hair like feathers in the wind.
The village is stirring now and the church clock is chiming two across the colza fields. I can hear the occasional rumble of a distant car as I pass through the splintered light and shadow of the trees.
Ambling up to the birthday table, I catch a discarded doll under my flip-flop.
“Let’s take a walk,” it squawks, and totters off across the grass.
The tablecloth ripples lethargically and a damson drops dead in its center.
They’ll be awake soon, I guess.
I should go in now and dress him for his party.
He will be lying as I left him on the bed, arms outstretched, nappy
loose, like a tiny Christ, piercings of light from the weather-beaten
shutters,
like gold dust on his body.
How exquisite it would be if today could bring a miracle.
If only he could wake to feel his body,
and come running out into this orchard
to sing and dance
among the children at his table.
It ends well, summer. We’ve all made breakthroughs, in our own small ways.
Alex runs the Cardiff marathon and has his picture in the paper. He has a medal round his neck, and Joe in his arms, and they both wear the smiles of champions.
Sian passes her exams and falls in love with a footballer from Pontypridd.
And Joe makes steady progress. Everyone thinks so in Market Road—Kyra and Jenny with their smiles and their shopping, the duo with their drums and tambourines, the massage lady, the speech therapist, even the physio says he’s doing well.
We are doing a new therapy now. Joe sits in a chair from Oswestry, belted up to the chest, and we rock him backward and forward while he leans from side to side to touch the toys that we hold out for him. Every day we hold them just a little higher, just a little bit wider and just a little bit farther away.
We put the belt down a notch if he gets there, working the muscles in his torso band by band. Alex thinks he’s getting stronger; and turns up every day to do it. He thinks Joe could possibly be strong enough to sit up alone quite soon, and says his speech is getting clearer all the time.
I heard Joe tell Alex he loved him today, and Alex answer that he loved him, too, without having to check what he’d said at all.
We’ve all made breakthroughs.
New toys have brought new blessings to Market Road this summer. Joe drives an electric-orange car now with a joystick, and spins round in circles in the car park.
He has a brand-new, sky-blue walking frame, without belts and buckles and irons to prompt his feet, and hangs inside it, inching along on his toes.
These are his first real steps, I suppose.
The old man from Preswylfa Street, who passes this way, stopped to talk for a while when we were practicing today.
“There you are,” he said with a smile.
“He’s mobile at last.
There you are, there you are.”
It felt like a dream.
He asked me if I’d noticed the rosebuds when he left.
I think he was trying to tell me something, the old man from Preswylfa Street, when he passed this way today.
To slow down maybe and take a little time just to enjoy these steps for what they are.
Not miracles, perhaps, not all I dreamed of, but Joe’s own small steps nonetheless.
When we started back across the road, I noticed the roses. They’re earlier this year.
YEAR FIVE
IT WAS the wheelchair first.
Black and built up with headrest, footplates, shoulder straps, a pommel to keep his legs apart, a harness to secure him and twice the size he really needed.
The man at the clinic said it “allowed room to grow into.” It’d “still fit,” he said, in three years’ time, and we had to be “realistic.” Joe struggled as he strapped him in, his angelic face turned toward me, straining to get his words out.
“I want to walk, Mummy,” he said.
Everyone was encouraging when I brought it home. Christine next door said it really wasn’t so bad; that there were loads around just like it and Ray said it was nice, in fact, to see Joe sat so straight, which was by far the most important thing. Dad offered to buy a new one on the phone, specially made, he said, just as I’d like it. Alex said he’d tart it up a bit with some of those psychedelic wheel discs and luminous paints.
It wasn’t the end of the world, everyone said that; but it seemed to cast a shadow, hanging about the place, next to his racy orange car and sky-blue walking frame, stealing the limelight from his Peter Pan swing and his old special chair now re-covered in flowers.
It was like the archenemy had come home.
We’ve hardly used it this autumn, Joe and I. “I want to walk,” he says, a hundred times a day, and so we go out in the walking frame all the time, while it sits in the dark under the stairs.
We go to the exhibitions at Chapter, where the floors are smooth and shiny, and we go to the library round the corner, where the librarian saves him stories with clear, bright pictures. “Tankoo, Liz,” he shouts when he walks out again, and she puts her finger to her mouth and waves at him, as everyone returns to their books again. He’s happiest when he’s walking, Joeski—he holds his head up better, as if he’s proud of himself.
I don’t take the wheelchair to Steiner either.
It’s moved across town, to pale pink rooms at the top of a narrow staircase in Splott. I couldn’t get it up them, not even if I tried.
His pale pink days feel numbered now the days are getting darker. For all his progress, the Steiner kids have grown up around him, and for all my longing, when the other mothers talk about primary schools, we don’t fit in.
The letter on the kitchen table says it isn’t up to me where Joe can go to school. He must be assessed, approved and statemented, it says, and it is something that will be decided by experts.
The roses are whiter than his hair this autumn.
Just by a shade or two,
now his baby years are over.
The experts don’t see Joe like I do.
I can tell by the way they try to fit him into boxes, and the way they
try to write him up in black and white. I can tell by the way
that they smile, with their heads tilted
&nb
sp; sideways. And the way,
they don’t appear to listen
to a word I say.
The experts say Joe has such multicomplex needs, and they use such multicomplex phrases to define him, it’s hard sometimes to know what they see, but it’s not what I see.
I talk about his progress when they come,
the way he’s achieved so many impossibles,
how he’s learned to see, and learned to talk,
learned to roll and, in whatever fashion, has learned to walk.
I tell them he’s come so far
he’s something of a superstar,
I tell them he gets every word we say,
that I think he’s quite bright,
and needs a tailored education.
They visit us time and again, the experts. They tick a few more boxes and ask me lots of things that I don’t know, and I get this feeling when they come and go, that they really don’t see him like I do.
It’s started to feel so very small
to be me—
“Mum”—
the one who knows him best of all.
(Daybreak)
They’re such black letter days, this autumn.
They begin with the thud of the heaviest reports, and I’m up half
of the night reading them.
All those multicomplex phrases that define us,
all those multicomplex issues,
all so neatly typed
in black and white.
Between these bold black words
and this cold white matter,
I’ve almost lost sight
of the boy I used to know.
The psychologist’s report came yesterday. It was the very last one to come and I’ve read it over and over all night long.
I can still remember him here, the psychologist, with his EP charts, his questions and his Parker pen. I used it to write Joe’s words on a piece of paper at first, so that he could tune his ear in to the garbled sound, and then the two of them went on by themselves.
I can still remember the poem Joe told him too. “I am a bird, I fly high, up and away in the sky,” he said, as the psychologist nodded and smiled, his head tipped sideways, packing up his pen and his charts into his briefcase.
The psychologist hasn’t used big words at all in his report.
He’s just put that Joe’s intellect is in the average range.