by Nia Wyn
“Average”—normal.
And it seems such a simple, insignificant word, amid all his vast complexities,
that it’s strange to think that’s it’s the one
that proves so many other experts wrong.
He has normal intelligence now,
this boy that “wouldn’t even know us”!
I’ve been up on the window seat all night long, going over the psychologist’s report.
The street has been empty, thick with fog, and now the chapel windows have turned glassy gray with sky.
Last night I learned that
nothing’s black and white,
that kids can’t really be defined,
and I’ve learned to take,
one daybreak,
at a time.
It seems simple on the face of it. There are only two suitable schools.
One is Craig-y-Parc, the other is the local special needs. They’re both in Cardiff and it’s quite clear cut to me which he should go to. He’s been visiting the Craig-y-Parc nursery since he was small. He knows them there and they know him.
He’s happy.
He’s used to the conductive therapy they do,
he’s making progress.
It’s a “specialist center” for children with cerebral palsy, the classes
are small,
and they let the children like him use walkers!
The local special needs school does not encourage kids with Joe’s level of cerebral palsy to walk. The physiotherapist says it can increase stiffness, that they do better using wheelchairs. There are children with autism, behavioral difficulties, spinabifida and various other special needs to see to too.
The therapies are few and far between,
it’s almost bursting at the seams.
The Authority says it is not up to me where Joe will go. It says he’s been assessed, approved, and the experts agree that he’d fit into this school quite nicely.
The Authority has made its decision.
It doesn’t answer my letters or phone calls now.
It says it’s final,
and if I don’t like that,
I can take it to tribunal.
I don’t—so I do.
It’s hard to consider what is “necessary and adequate” for any human being.
Especially my child.
His is the life that sustains me,
the blood that stops me growing old,
his is the hand that when I die,
I’ll want to hold.
He’ll always deserve better.
It’s taken all winter to learn the complexities about the tribunal. What his needs mean in the legal jargon that defines them. What is strictly “adequate and necessary” to meet them.
Craig-y-Parc conductive school is private, costly and not necessary, the Authority says. So it’s a battle of wills at the end of the day.
We have a polarized take on everything, the Authority and I.
Different schools of thought,
different costs to bear,
different needs to consider.
We’re as far apart
as lions are to lambs
at heart.
(At the Planetarium, Baker Street, London)
Julie says it calms her, looking up into space through this velvet, rounded sky.
The man at the Planetarium says no one really comprehends it, though people seem to think it puts things in perspective.
It’s just an average-sized yellow star, on one of the spiral-armed
edges of our galaxy, the sun.
Though it’s as central to its universe,
as this fair-haired child is to mine.
Everything’s relative,
Joeski appreciating the stars, and Freya now with questions on infinity, that none of us can answer.
It’s been a droplet in the sea of time, this winter turned spring, yet it’s seemed like an eternity to me.
The conductive school up Star Lane is just a stone’s throw from our house in Market Road, and yet it’s seemed a million miles away, perpetually out of orbit.
The tribunal was seven hours long,
and the panel is still debating
all the pros and cons.
I guess his future’s in the stars,
between evens and odds,
in the lap of the gods,
while we kill time in dark places,
gazing up at all these heavenly bodies,
worlds away,
in quiet contemplation.
It arrived at the end of a week of good-byes, the letter from the tribunal.
Sian left for London on Monday, for a brand-new life with her footballer from Pontypridd. She promised to keep in touch, and took her coat.
Joeski left Steiner on the Tuesday. The kids held his hand at circle time, pulled him round a few times in a cardboard box attached to a piece of rope, and painted him sunsets and rainbows.
And it was the week I turned forty.
The house was like a funeral parlor. Everyone sent flowers and I wandered around among them feeling wilted and tired, like something past its sell-by date, something now reduced.
It was the week Joe first felt heavy, the week a girl in the park happened to mention in passing that she’d seen Alex out with someone else.
It seemed to arrive at the end of everything, Joe’s statement.
And although it was everything I wanted,
and had every single thing I’d fought for,
typed up crisp and clear
in black and white,
it still took a while to sink in
that I’d won.
I’M FINE taking him.
In the car up Star Lane, tooting my horn, around the windy bends and him shouting, “More, Mummy do it again.” I think of the times I prayed for this.
We are laughing. The sun is shining. I’m fine going in.
Up through the corridors of wheelchairs to the light at the end of the hall and the brightly colored rooms of the conductive center. It is next to the swimming pool, which has hot blue water to relax his muscles, and there are smiling conductors milling around and walking frames round the doors.
“I want to walk,” he says as we pass them, and it is enough to know that here, for now at least, he’ll be allowed to walk to his heart’s content.
The headmaster meets us and shakes his hand. “Hello, Joeski,” he says warmly, and Joe answers him back, all cock-a-hoop, then joins the others. There are five kids in his class, and at the table, there are five special chairs shaped like tigers and giraffes. The teacher, who knows him from nursery, seats him by the window, which has a view of the cherry blossom trees.
His little blond head has dropped on his shoulder at a right angle to that window when I leave, and walking back past the long lines of wheelchairs, I now see how they increase in size to adult years. I can hear him calling out to me when I reach the foyer, shouting words that I’m quite sure no one else will understand.
The light’s so sharp,
so empty with freedom when I reach the door,
that my arms and legs move into it,
as if they’ve left their soul behind.
This physical separation has a unique numbness to it.
We can’t complete each other anymore.
I break my heart going home.
There is a monsoon inside me.
The days begin around seven now. He will wake and call for his music, and I’ll get up and find nursery rhymes or Mozart, whichever he asks for.
I’ll massage his hands and feet with sage cream, and then I’ll roll him over into my arms to wash and dress him in his red-and-yellow uniform. He will ask for porridge and toast and sit at the breakfast table on my knee, resting his head on my shoulder and telling me he does not want to go to school.
Before the special taxi comes, I brush his tangled hair and write notes to his teachers in his exercise book. I think of the things he may want to tell them, the things
he may ask for that they might not understand, and then I write out how these words sound, every one of them.
He brings me notes back at the end of the day, short and sweet one-liners: “He’s settling in fine,” they say.
He is so vulnerable; I cannot bear it.
Every time he goes,
I sit among the breakfast pots and pans,
and cannot bear it.
The man on the radio plays melodies to mothers on the school run.
One for Sam, who has three under eight, running her off her feet.
One for Jackie, whose four-year-old plays the piano. This one for
Rachel and the “two little terrors that drive her mad.” They all
sound the same to me,
blessed,
and I want it for him
and I want it for me,
so badly.
I can’t stand the fact that I can’t heal him. Can’t stand the fact I can’t protect him from all those corridors of wheelchairs, can’t give him all those stolen landscapes and long-lost freedoms.
I can’t bear his heartbreak when it comes. . . .
It’s bound to come.
Sometimes, when the taxi’s gone, I go back to bed or lie on the sofa in my nightie watching the blond presenter I once shared a desk with, reading breakfast news.
She wears a tailored suit now and patent shoes.
We’re satellites apart.
Sometimes I think of the girl I saw up at Joe’s school. I can’t stop thinking of her. She was in the corridor one day in a summer dress, pale pink cardigan and black metal wheelchair which had a fluffy headrest and Perspex tray. She held her hand awkwardly and leaned backward, straining her neck to say something, just like Joe does, but I couldn’t understand her. The IT teacher told me she’d be eighteen soon. She said she was bright, this girl, quite similar to Joe.
Sometimes, these days, I don’t move from the kitchen table. I just sit here alone, talking to God.
I don’t ask for miracles now. “Just a sign,” I say, to tell me what it is that I’m supposed to do.
Just one small sign,
to pull me through.
The first day I went out, I took the bus to town.
There was a health show at the university and I walked up and down the aisles, up and down the cure-alls and remedies, looking for something new, something I hadn’t yet tried.
But there was nothing I hadn’t tried.
I went to a lecture called “Healing the Body and Healing the Mind,” by a man who had scruffy dark hair, a hole in his jumper and was really quite funny at times.
I talked to him after, when he’d packed up his notes and was walking back to the coffee bar, and he gave me his card, which said: We can all heal our heartbreaks—whatever they are.
For a moment I felt he’d read my mind.
For a moment it seemed like God had sent him.
I see him on Thursday afternoons, David, the guy from the health show. He works from home, not far from me, on the same side of the city.
I should walk, but I take the car and I drive the way I go to Joe’s school, turning right at the lights halfway, into a landscape between things, with sycamore trees and small white suburban houses with a garage on the side.
The first time I came, he hugged me on the doorstep and took me inside to a room at the back with some bookshelves and a view of the garden. I sat there while he made some tea, watching a small white dog running round the blue and pink azaleas.
When he came back in and asked me how I was, I said I had no idea and started to cry.
It seemed such a silly thing to cry about at the time, but I’ve cried with him for weeks now in this small back room, on warm suburban afternoons.
The counselor calls it a journey, the time we spend together here.
“Like a road trip,” he says, round the rough map of my heart.
I guess it adds some drama, passing towns called Guilt and cities called Grief, among the pink and blue azaleas.
AMY WAS born in June. Joanna said she felt like “the cat who’d got the cream.” A pretty little sister for Callum and Jude—she’d had everything she wanted.
Life was perfect for Joanna.
She had a sense of the goddess about her.
Amy was still brand new when she brought her, already lifting her arms and grasping a rattle. She made eye contact, blew bubbles and held her head up strong.
We made a pact once, Joanna and I. We said we’d never compare our children and we’d never hide our feelings from each other, but I sometimes hide them now she comes with Amy.
It’s a mixed-up midsummer 2003.
I tell people I’m getting over things; but I’m not. I say I’m better than I was, more contented, especially since the tribunal, but I’m not, not really.
Between the grief and the longing, there are cul-de-sacs of pain.
I hit them in the morning, before I get him off to school. When I wash and squash and squeeze him into his brand-new, multizipped Lycra undersuit from his ankles to his neck which, for four hundred pounds, promises more proprioceptive feedback between muscles and brain. It is suitably named “a second skin.” He tries to stop me sometimes and I run the zips up faster so they sound like a train, which always makes him laugh again.
Then I fix the two hard plastic splints to his feet, fastening them up to the knee to straighten him out, and lift him into his wheelchair to start his day. I belt him neatly at the hips and shoulders to stop him falling sideways and strap his feet firmly onto the footplates, so that he won’t slide down. To finish, I put a patch over his right eye to strengthen the vision in the left, which I think is weaker, but I could be wrong—no one’s really confirmed it—and then, matter of fact, put his glasses on.
Sometimes now he’ll lift his hand to knock them off again, teasing me, and I, secretly delighted by his achievement, feign crossness and insist he put them on again.
These are the games that we play.
There are cul-de-sacs at night too.
When I put him to bed and kiss him good-night, and insist I’ll be cross if he does not go to sleep.
I’m writing my lists at the kitchen table, and it starts like this:
“Mummy, I can’t go to sleep.”
“Go to sleep now, Joe, or I’ll be cross.”
“May I have another story?”
“No!”
“A glass of water?”
“No!”
“Mummy—I’m falling.”
I run back upstairs now and catch him just in time, just in time before he falls. I suppose I realize the will it’s taken him to do it. All those impossible thought patterns he’s mastered and the mighty effort it’s taken him to move his body so that he’s falling and I’ll come running back again. The longing must be desperate that precedes it. “Tankoo,” he says as I hold him in the dark, gently rocking, reconjoined.
These days it seems everything’s black that comes out of the blue.
The occupational therapist says I must start to think about stairlifts, bathroom aids and hoists. “A disabled child disables a family,” she says, over her cup of tea, one day. Despite my protests, the speech therapist puts his name down on the list for a communication aid and still doesn’t believe he’ll speak “effectively,” so that other people “really understand him properly.”
People say it’s time to start my life again now Joe’s going off to school. They say that my life is different from his, and that it’s time to move on.
But they don’t know how it is for me.
My whole world has cerebral palsy,
whether I’m with Joe,
or not.
“He’s nearly five.” Alex says it, every time he leaves. He thinks we’ve chased enough miracles and tried enough things.
He mentions things we haven’t thought of, things we haven’t spoken of, for years. Things the doctors used to say.
Alex says we’ll burn ourselves out, all the therapies we’re doing. That t
here are parents like us, not five but eighteen years later, and still nothing’s really changed.
Parents who’ve gone to America, parents who’ve gone mad, parents who’ve moved heaven and earth, and are still wheeling their child into exactly the same places. Alex doesn’t believe our “time-consuming therapies” can change much anymore. “There’s no proof,” he says, just like a doctor now.
“But he’s not even five,” I say back to him, and then we just stand together, out on the doorstep, looking back and forth at one another, both trying to figure out why time should have something to do with it.
Alex bought his first single when he was five. I moved to The Moorings and put my dolls round the fireplace in my room. We can still remember the things we did, the things we imagined, the things we understood and knew.
We’d hoped for more for Joe at five;
and now five looms before us,
like the end of the world.
I still go back to the doctors, just to check if there is anything, “anything at all.” I go back to the therapists—even the ones I once gave up on—and back to the healers, just in case.
One bright June morning I take him on the train to see Uri Geller. My friend Penny picks us up at the station in Reading and drives us through his wrought-iron gates and we all have tea in his room full of crystals.
“Tell me what he sees,” I asked him. “Like you do on the telly.” But he couldn’t do it, not for Joe.
He gave us a signed bent spoon when we left.
I laugh about it with David one wet, black afternoon as his small white dog runs round the pink and blue azaleas.
“I’ll never give up,” I tell him.
“I can’t give up until I’ve healed him.”
David says I’ve reached a place called Sacrifice.
The papers are full to bursting with five-year-old champions. Egg-and-spoon races, cartwheels, hops and skips and jumps. I look at them before I go to his sports day.
I sit with a select group of mothers and watch the conductor help him splash his arms about in the swimming pool, watch him struggle to hold a ball and watch him roll himself over toward the edge of a blue shiny mat.
“I did it, Mummy,” he shouts out as his teacher pins a red rosette upon his jumper, and hangs a medal round his neck for “trying hard.”
I clap and cheer as if he’s crossed the Amazon.
I try so hard at being happy,
but every battle he wins these days feels hollow.