by Nia Wyn
We lay on our backs in the pool for a while, Joe and I, and closed our eyes. “Imagine,” I say, “you are floating in the sea.”
It felt like we were flying.
I think it has changed my dreams, this day. All those aqueous blues with the people I met once, floating, bobbing by.
I hope they also got to know,
Acceptance has its stages
like the sun.
We create our own therapies now, Joeski and me, based round the things he likes to do.
He likes to sing, dance and watch Strictly Come Dancing and The X Factor on the telly, and so twice a week we just sit side by side, freaking out.
When he dances Joe looks like a tin soldier, the way he moves his arms and legs. His sense of movement has got better.
These days I’m happy with the company I keep.
I am happy when Jamie Divine turns up in his bright blue Porsche, with a dozen red roses, just like the scene from Pretty Woman. And I’m happy when Alex turns up at times he never used to.
Alex says it’s like a different place, this house, all neat and tidy.
He likes to have a cup of tea,
and put his feet up on the coffee table.
Joe learns about Jesus in school, and sends some presents to Africa.
He asks if I believe in miracles.
We visit the chapel across the road this Christmas and sit with the congregation, looking up at the beautiful windows, and we look at nativity scenes all over town, and discover just how many baby Jesuses are stolen.
We skate together, him between my legs, on the open-air rink outside the City Hall. We go up on the Ferris wheel and I point out the lights of the Western Mail to him, blinking in the distance.
I squeeze myself on all the baby rides beside him, for the very last time.
There is snow on Christmas Day.
A tsunami hits Asia on Boxing Day, and wipes out entire communities. Everything runs awash with it. The papers are saturated with pictures and there is one of a mother running down a Thai beach, toward certain death, to hold her children.
She is found alive, New Year, the whole of her family safe and well.
“Yes,” I tell him.
For all life’s tragedies,
I still believe in miracles.
In the chapel car park across the road, I see a mother that has a baby in her arms with cerebral palsy. I am in the upstairs window and I can’t take my eyes off her. She is joining the circle of mothers whose toddlers run about their feet outside the day care and she is trying to talk to them, as his head lolls about on her shoulder.
A bus, full of kids with special needs, passes the window, blocks the view, and when I look again, the circle has grown wider.
I am looking at mainstream schools again for Joe now. I traipse around them looking for ways that he might fit in, and might possibly be included.
A therapist tells me that children with cerebral palsy can sometimes be treated like the classroom pets or mascots in mainstream. A teacher tells me that the other parents do not like it because they think it holds their kids up. A mother who sent her own son, like Joe, to mainstream, says the first day he came home he asked if she could make him a “human being.”
A lot of people feel it’s best to keep kids separated, but I believe
in inclusion,
the way I believe in bigger circles.
At the writing class I join at Chapter, I sit at a large round table with other women, trying to write something.
The teacher brings along a bag of prompts to try to jog our senses.
I am given a doll, which can move its eyes up and down. Up is yes, down is no, I write.
The teacher tells me I have an unusual way of looking at things, but should try perhaps to write a little more!
Acceptance comes in stages
like the sun,
but most of all,
it comes through Joe.
Lately at home he has had a possum, a small button watch he can now use, to work just about everything. He operates the lights, the television, the radio and the telephone, and the house is like a seventies disco. He intercoms me now to talk if we’re in separate rooms.
He’s started to use a special fork, which he can bring to his mouth, unsupported, and a special pencil to make his marks upon a page. We have discovered now that if we look through yellow Perspex it takes the glare away and he sees things more clearly.
He’s started to direct the taxi drivers to school. “Turn right at the end of the road,” he shouts, before he’s even left. At school his teachers say he’s started speaking in long sentences, using big words, and is impressing them all with his imaginative stories and baffling lies.
He’s also taken to going out with his “companions” much more these days, and has suddenly taken to calling me Nia.
He’s started to drive an electric wheelchair.
Lately I feel as if Joe’s slowly returning my hands, my eyes, my arms
and legs to me.
Setting me free.
It’s him that gives me strength to fight for him forever,
and the strength
to claim my life back.
(Spring 2005)
ALEX TAKES photographs of life in the city, and I start to write again—neither of us quite like we used to.
He says that since we’ve been apart, Joe’s taught him to look at life from a “braver” angle; that he’s taught him to see with his heart. Alex sometimes puts on exhibitions now, and people call his photos art.
Now I’ve begun to write again, I don’t want to write in the places I used to. I don’t have a desk, or headlines and deadlines in mind, and I drive to the coast, to places I barely know, and write passages.
I go to places where the seagulls squawk and the gorse smells of coconut, and the cliffs are black and bluey-purple on their spine.
I go where the sky feels low enough to touch, and talks to me of letting go.
I find places I didn’t know were part of me, and write passages that might once have seemed as foreign as the sky is to the sea.
Joe’s changed the way we see things, Alex and I. He’s changed the way we think and the kind of places we find meaning.
He’s changed the way we grow.
I think we feel things more deeply, Alex and I.
And, sometimes, in the pause of a pen or the click of a shutter, I
wonder about the two of us,
and our two little piles
of words and light,
still up there in the attic.
The test at the eye clinic suggests the clarity of vision is now “good enough to drive a car.” Joe sits on his own, in his wheelchair, matching black and white shapes, the size of peanuts across the room. It’s an exceptional day—he can’t always do it, as it seems to come and go—but the doctor says Joe’s taught him some things are possible which he once did not believe were.
He calls him “an inspiration.”
The psychologist says Joe’s doing far better than was ever imagined. This time, when he sits with him at the kitchen table, I watch Joe pass his test with flying colors. He says Joe’s just as bright as his six-year-old peers, and he’d like to recommend “full-mainstream” now.
One day this spring when I go to visit Joanna, we walk round Ruskin Mill, a center for people with learning difficulties, and look at the beautiful statues and waterfalls they have created.
I have learned this spring,
never to underestimate
children.
The man on the radio says that stem cell research has been backed in the budget. He says medical science will, almost certainly, be able to cure the incurable one day.
I don’t dwell on medical science these days, too long.
Joe says the grass is rainy,
and I’m sure one day,
he’ll be a poet.
I have learned this spring,
to respect life’s mysteries,
and to deal in othe
r kinds of magic.
I see things so differently from these mothers I meet in the mainstream.
I can tell now I’ve arrived with Joe, and meet enough this midsummer, to know.
I talk to them in their worlds now. The worlds I thought we’d never
get to, Joe and I. The Beaver Scouts in Pontcanna, the local play
centers, his first trial days at “normal” school.
It’s our world now, I guess,
but I can tell by the things that they say,
some don’t see it
that way.
There is still a Shadow World.
Some mainstream mothers see us as “a shame,” a tragedy. They say they don’t think they could bring him here and don’t think they could be like me.
They call it “brave” to be the odd one out. They say that they couldn’t cope and couldn’t do what I do; they say they don’t know what, if anything, would pull them through. Mostly, when they talk to me, they say they “can’t imagine what it’s like.”
Alex says people rarely understand the shadow, they forget that it’s part of the light.
These days I don’t even see his wheelchair at Beavers, I see the dozen turquoise shirts that surround it. I see him get his badge for helping others, I see him get to carry the flag, I see him take his promise in a group of six-year-olds that sit quietly, clap and listen as if they’ve understood his every word.
I don’t notice his walking frame down at Riverside Play Center. I see a kid called Goodass stop the football in the yard to let him cross. I see each child that waits to hear his name, and see life as the beautiful game.
On his first day in Meadowlane School, I didn’t see what the other mother, who gave me a pitying look as we passed the gate, saw. I just saw a child that “would never do anything,” taking his place in the mainstream.
I saw him join the singing in assembly and the thoughtful African teacher who made him feel at home. I saw the way the kids got closer as the day wore on and how, little by little, the space was conquered in between them.
I learn from the kids how to see things these days.
The things they say and do
surpass their mothers.
I learn from each and every child around him,
especially the boy with the stud in his ear and the broken shoe, who
just says: “Hi there, Joe, my name’s John.
Look, I wear glasses just like you.”
I see that all kids are different,
I see that all kids are special.
I have started to give talks in schools and colleges and clubs these days about kids like Joe, and I’ve been writing a book.
Because sometimes, even if just for a moment,
I wish you could imagine
what it’s like for me.
Just for a moment
I’d like you to know,
that within the shadow,
there is a constant interference of light.
The pregnant woman at the next till in the supermarket has the whole of a healthy, normal life before her.
It looks like a big balloon up her jumper, all ready for liftoff.
I sometimes still have secret wantings,
and I know these wantings
may never cease.
The gardens in Market Road are in full bloom again. From the window at the back, I can see them all the way along to the corner shop.
I can see the flagpole of Joe’s carriage, which Sam stores for me in his backyard, Derek’s short-sleeved shirts spinning round on his line and the cats at play in Christine and Ray’s.
In our garden, the tree has a blossom of birds, and at its roots, I can see the statue of a mother and a child with a marcasite stone for its head.
Sometimes here it crosses my mind how far we’ve come, Joe and I. Through our first contact, first hugs, first looks and first words, to these days when he’s out playing with all the other children.
It crosses my mind that all my earliest dreams have been fulfilled, and my earliest fears have all been taken care of.
Sometimes here, I wonder at how much he’s changed me, and the ways I’m so much stronger than I ever was before. I wonder if, without the common milestones, we have somehow made a thousand tiny steps, that I appreciate far more.
If, without him, I’d ever have confronted life,
faced fears,
and cared and fought for anything
the way I have for him.
If I could have ever learned
all I’ve learned through my heartbreak,
and if, without affirming my own spirit,
I would ever have felt this close to God.
Sometimes at this window, I think of all the things that I love more
because of Joe, and in this space,
I see our journey as some kind of pilgrimage,
I feel we’ve found a sacred place.
Standing here a thousand things can cross my mind.
My heart has reshaped a thousand broken pieces,
and for every moment I still want to heal him,
there are a thousand when I know he’s perfect,
exactly as he is.
The most profoundly beautiful, and exquisite, moments I’ve ever had have been those I’ve spent with Joe.
And sometimes now it crosses my mind,
that my life is as big and as close as life gets,
and that I am truly,
living it.
I have started to wonder what the city gets up to these days. What’s happening at the paper. I can have my desk back if I want it.
Life’s moving on in Market Road. I’ve almost written my book, and the new girl next door will soon be having her baby.
Today I saw the saxophone student at the bus stop on Library Street. “He” was a girl after all, it seems, just like me!
She had her rucksack and her saxophone case with her, and she looked like she was leaving town.
I wanted to say something,
but we passed each other by,
without even a word.
The crowd is huge on the last day of term up at Craig-y-Parc. The whole school gathers for the leavers’ assembly, the full range of teachers and parents and kids from five to eighteen, all squeezed in tightly amid a stunning display of mobility aids.
We can’t even see Joe, Alex and I. He is somewhere at the back.
The head teacher gives out certificates, shields and the school’s silver cup on the last day of term, and the cheering and clapping is like a thunderstorm.
It’s the same every year.
This year, though, there is one difference.
This year, the head says, the cup will not go to the child that’s done the best, but to the one that’s come the farthest.
This year, he says, this particular child, has discovered “independence.”
It is a small, blond-haired boy that emerges from the back of the crowd to get the prize this year. As he weaves his way through, he is smiling and his head is up, and then he sweeps in a cool arc, onto center stage.
This year it’s Joe.
If life so far were a movie or fairy tale, it would probably end on our last day of term, this summer.
The details no doubt would be a touch more spectacular, everything healed, restored; no wheelchair, perhaps—no doubts about the happy-ever-afters.
But the feeling inside would be the same.
It feels the same as the one, that long-ago summer,
when smiling nurses breezed in and out,
and the sun dropped in through a window,
spellbound.
It feels like a kiss on my belly.
We are still the proudest parents in the world!
ON THE window seat in the front bedroom, I look out on a small patch of postcard-blue sky.
The sun is high; it’s mid-July.
All’s well in Market Road; and I have a sense that a cycle is completed. Joe will be seven at the end of this summer an
d will start at mainstream school this autumn.
It is one child’s lifetime away now, the summer of ‘98, when we brought a small blue bundle home in our arms, and the only thing to hope for was a miracle from God.
I guess that rare Amazonian flower has not been discovered and the first half of the decade of scientific, medical, and technological breakthrough has not brought the cure-all we hoped for.
I guess the world’s still pretty much as it was.
Jesus hasn’t returned!
But I’ve learned something of miracles along the way,
and something of this love,
that seems to conquer everything,
in its small achievements of the day.
This love transcends the body
and is a kind of exchange,
this love is all I need to know,
Joe is my miracle.
To understand this love, I guess,
is to understand the light,
sometimes we have to
touch it first.
We plan to take Joe to Disneyland this year, we plan to swim with dolphins, maybe fly in a basket that swings under a big balloon, but after that I can’t imagine what the next seven years will hold for us.
I can’t imagine what battles he’ll have to fight, and what extraordinary
gifts he may find in his uncommon life, though I suspect he
will fight,
and find. . . .
I think he’s like that, Joe,
that kind.
The sky is blue this Friday afternoon. My tree of blessings is littered with small white cards and before I know it the roses will be back in bloom.
Children are gods when they arrive in our arms; we set our hearts by them.
Thank you, Joe,
for everything!
EPILOGUE
IT’S SPRING 2008 and, sitting in this college library, I hold this little book that was once upon a time my diary.
It’s almost three years on since that long-gone mid-July, and we have shared almost another thousand days, Joeski and I. Most have been happy, most have felt blessed. We’re muddling along just fine, I guess.
Today, when I look back at Market Road, I do so from another time and place entirely. It seems as if this onetime diary travels these days by itself, and I wonder if, with books like this, some endings simply write themselves.
When I hold it in my hands, I still remember the time the world seemed upside down to me, and it was a meditation, a kind of therapy. I wrote it in the dead of night and it was my way, I guess, of inching life back step-by-step toward the light. I wrote it for me and I kept it for Joe, who if ever one day came to question his own value, would also know how much he’s loved.
