anne donnovan - but

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to carers everywhere


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Anne Donovan

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And now the moment weve all been waiting for - the overall winner of Carer of the Year Award.

The glammy lassie fumbles wi the envelope, redtalons in the way. She keeps wittering tae cover the pause.

Of course we know that every carer is a hero or heroine in their own right, but tonight the judges have had the impossible task of choosing just one to receive the award.

And there she is - Jill Harris from Milton Keynes,all poshed up tae collect her trophy and her cheque for twogrand, which of course isnae really for her anyway - itll gotae the charity shes set up for teenagers wi special needs.


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Dazzled by the light, her sparkly blue frockcontrastin wi the pallor of a skin that hasnae had enoughsleep for the last nineteen, twenty, whatever years. Thecamera briey glances intae the shadows where a gure ina wheelchair, presumably her child, huddles. Nae spotlightsfor him. Then the guy in the suit haunds over the chequeand the cut-glass trophy she does get tae keep, the glammylassie kisses her and gies her a bunch a owers and thepoor wumman stands there, haunds full, tryin tae say thankyou intae a mike thats set far too high for her.

Would like to thank ..so many wonderful ..on behalf of ..Shes tremblin; the guy in the suit hovers, ready tae

swoop if she draps the trophy and it smashes in a millionbits across the stage.

Jill, hen, I wish you could tell them the truth.Your truth, whatever it is; the lost years, the other weansyou constantly felt guilty aboot neglectin, the stuff theydont want tae hear - just as they dont want tae seeyour wean, want him kept in the shadows. They wantyou tae stick your halo on for the night, even if its madeof plastic.

A stone has grown inside me. Been luggin it roundfor years and its huge noo, has squeezed my heart intaea neglected corner of my chest. Back then, in the beginnin,it was a wee chuckie stane: snow white, veined wi greydribblets, like marble. Marble is awed but beautiful. Hard.So heavy.

My granny had a marble surface for makin pastry; itscoolness kept the pastry light. My granny had cool haundstoo, no like mines. At six year auld my haunds were alwayssweaty and no matter how hard I tried tae get them clean,no matter how often I washed them, there was aye somemanky bit that got on the pastry, the leftover bit she letme roll out and cut intae wee shapes. When it was cookedmy pastry was grey and deid lookin, no like my grannys,light and lovely. Afterwards she wiped the marble doonbut gentle like, never scrubbed it. You have to be carefulwi marble, its porous. Not a lot of folk know that. Theythink because its hard and tough its waterproof but its no.Water can seep in and ruin it.

Mibbe its no a stone Im carryin, mibbe it is marble,mibbe thats why its that heavy - all the tears Ive nevershed, that have dripped inside me like an undergroundstream, theyve made it that heavy. If it was stone, thewater would shrug aff, drip for centuries and make naedifference. Like int.

A lot of folk think thats what Im like, hard as int.Never want tae talk about it, never give up or gie in.A few year back they got us to dae counsellin. Yet anotherinitiative. When theyre no ignorin us altogether they have

an initiative. A young lassie wi a psychology degree andbig grey eyes.

How do you feel? What dyou say? How can anyone understand?

Thats why we spend that much time thegether, parentsof special children. That was another initiative, calling themspecial. Used tae be mentally handicapped. When they telltme I couldnae bear to say the words. Still cannae. But in the


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end what difference does it make what you call it. Specialneeds, differently abled, profound learning difculties...how did I feel? How do you think, hen? Just hope itdoesnae happen to you.

Only I can never say that - itd sound as if I dontlove my child.

Of course I love her. Of course I love her wi apassion almost unbearable, were closer than breath,than heartbeat, but ...

You can love someone with all the erceness thatsin you and still wish that things were different.

But.Everyone hopes their babys perfect; they smile

when theyre supposed tae, laugh and run around, are toilettrained at three and at ve you wave them aff tae schooland have a wee greet cause youre lossin your baby.

Ill never lose my baby.Shes taller than me noo, and heavier, but shes still

my baby. Just as she was the day they nally broke thenews and tellt me tae go home and love her.

Love is all you need.

I needed a new washing machine. Extra sheets,clean claes three times a day; I couldnae bear if she wasnaeperfect, if there was food in her hair or dribbles on hersleeve, hated anyone tae feel sorry for her, no respect her.

Now I could do wi a new back. All carers have sorebacks. Must be from carryin their stones. No the weans,no them. Stones made up fae guilt, fear, anger, and always,always, bein far too responsible.

There were two Paulas.The rst lasted till she was eighteen month auld.

A pretty wee baby. She smiled at six week, slept throughthe night at six month and at one she hauled hersel upand stoated round the house haudin on tae the furniture.Giggled and crowed in her buggy, planted wooden brickson top of one another, smiled wi her pearly teeth.

Then she stopped. Stopped nger painting, stoppedturnin the pages of her toddler books, stopped being thebaby we knew.

The rst time she had a t I thought she was dying, jerkin as if shed been electrocuted. Afterwards her haundsuttered like lonely wee birds.

Blood tests, hearing tests, eye tests, psychomotorskills and God knows what else. Left in a room alone wi herfor three days, no knowin what was happenin, while folk wifolders came and went.

And at the end, what? Profoundly mentallyhandicapped. Take her home.

How can your baby die but no die? Become anotherchild, another Paula.

Shes still there in her eyes, her eyes tell me whatshes feeling and what she wants. She is joined to me

so closely that I often dress us in the same colours, nodeliberately as I never have time tae think about what Imwearin, just how it happens. Her pain is my pain, her joymine. Theres been lots of joy, far more than youd imagine.And the folk weve met - other parents - wonderful, amazinfolk youd never of known otherwise. Like Helen. Dontknow what Id do without Helen. Laughed till we thoughtwed die at times, but ...


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But Im tired, dead tired. The experts said shed begone long ago. But the experts were wrong. Im scared forthe future. No one else can read her eyes.

Flick through the channels ... a pop quiz, a hospitalsoap, an eighties lm ... I try but am drawn magneticallyback to the Caring Awards. This presenter lassie in herlowcut frock and expensively streaked hair must of drawnthe short straw. Mibbe she hopes shell get noticed by someTV executive mad enough tae be watchin this instead ofyoung Tom Cruise. Itll be dead cheap tae make, but, justa few speeches and a free dinner. Feelgood factor for thesponsors. They show a short video of what they describeas the reality of life for carers. Ha ha. A sunny spring day inthe park. Nice-lookin young couple push a two year old withDowns in her buggy. Shes laughin. Pink outt. Very cute.

We are the forgotten ones,We are the ones whose eyes you dont want to meet.We do unspeakable things in public toilets, clean smellymesses, wipe snotty noses, humph round bags of giantnappies.To you, our children are not cute; you turn away from them

as though they were invisible. Thats what hurts most - youdont see them the way we do, miss their beauty, shotthrough with pure gold. We are strong, having spent yearsof our lives lifting and laying, holding and helping, existingon less sleep that we would ever have thought possible.Like vampires, we dont look much in mirrors. And if we did,no doubt wed nd that we, too, are invisible.

The lm moves on tae a centre. For wee wans,of course, no adults, that might be too real. Pastel walls,shelves heavin wi building blocks and paints, one helper forevery wean. Of course they dont tell you that the parentsprobably had tae ght for years wi the council, run jumblesales, sell rafe tickets, write endless letters tae get it.But, hey, just polish your halo and get on wi it.

Back to the glammy lassie on autocue. One of the most heartening things in recent years is the way that some conditions have become better understood.

She smiles beatically at the audience.Like autism.Oh God theyre gonnae trot out the Rainman

routine, updated for the 21st century, as if they were allwonderfully talented and actually with a bit of carefulhandling everythin could be just hunkydory - footage ofautistic savants doin tricks, drawing cathedrals or recitintrain timetables backwards.

I wonder if Helens watchin this. Her Sams 28 nooand, unlike my child, hes far from invisible. Its what goeson inside him thats invisible.

Helens the calmest person I know, doesnae rant likeme. If theres a boiling volcano underneath she never lets

on. But with every year that goes by, things seemtae get harder.

At yesterdays advocacy group, they tellt Samit was up to him if he took his medication. Respect for theindividual, they said.

Sam has the choice to say no.And if he says no, whats Helens choice?If he says no and is bouncing aff the walls,


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or beats up his brother what choice does she have?He cant make choices.Overprotective mother. Thats what they

always think.Everyone can be helped to make choices, even

limited ones.

Sam doesnae understand the concept of choice.If you gave him a choice he wouldnae eat. He doesnae likeeating, has nae sense of taste and a heightened sense ofsmell which puts him off most foods.

Hes a highly intelligent young man - he has an IQ of ..Im his mother.I know its hard.

You know nothing.

He paces round the table while everyone else eatsshepherds pie. He doesnae like food mixed up - it has to beseparated out. And hell only eat food thats symmetricallyshaped and tastes totally bland. At his place theres aperfectly round beefburger, home-made from organic

mince wi nae seasoning. Helen coaxes him to eat a fewmouthfuls.

Hes painfully thin - you can see his ribs show underthe red tee shirt. Hes got seven of them, each printed withe day of the week. God help Helen if she gets behind withthe washing and doesnae have the right day. The socialworker suggested she get two sets of tee shirts but hecan smell the difference.

When he was wee he used tae smell her hair. Sheloved that. Sometimes even noo when hes quiet and calm,hell dae that, sit beside her and smell her hair. Ive watchedthem. She shuts her eyes and enjoys his closeness, kidshersel on for that brief moment everythins okay. But ifhe stops takin his medication these quiet moments will go.Hell be hyper, birling round the room, listenin tae music tillthree in the mornin, too exhausted to go tae college thenext day, hell get out of his routine and his routine is theonly thing that keeps them all goin.

It must be his choice.He cant make choices.

How come these folk think they know better thanus - the mothers, the fathers, the ones who look after ourchildren every day of their lives. Even when they go intaerespite theres nae respite for us, sleeping in slivers of thenight, always wired up for the phone tae ring.

Theyre gonnae nish the show wi a word from their

sponsor - the mobile phone company want us all tae bein touch. Then a nal glimpse of the tired lady in the blue

shiny frock, clutchin her trophy and her dreams.

Switch the kettle on. Cup of tea afore bed. Hes onnight shift the night and I never sleep as well without him.Sit for a while starin at the gas re, watch the fake amesicker over the fake coal.

We had a real re when I was wee - used tae spendages watchin it. I thought there was another world in the


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re, wi jaggy mountains and red sunsets. The coal wasall different shapes and sizes: wee bits tae start the re,muckle great lumps tae keep it gaun and dross tae dampit doon at night. But theres nae magic in this re soI switch it off and watch it zzle tae nothing. I know I shouldget tae bed then at least Id have a few hours afore shewakens and the moanin starts, but I feel as if Im gluedtae my seat.

Eventually I rise, push Paulas door open a crack andsteal in, stand beside her bed. Her mouth is open and shebreathes loudly but her eyes are tight shut and a wee haufsmile licks round her mouth. Her soft, soft hair is spreadout on the pillow. I raise my haund to stroke it, touch it everso gently in case I wake her. She moans a little and makes aslight movement, then relaxes again intae deeper sleep, herbreathing quieter like a babys.

My precious one. My baby.

Anne Donovan is the author of thenovel Buddha Da and the shortstory collection, Hieroglyphics, bothpublished by Canongate. Buddha Dawas short-listed for the Orange Prize,the Whitbread First Novel Award andthe Scottish Book of the Year Award.It won The Prince Maurice Awardin Mauritius.

Winner of the Macallan/Scotlandon Sunday Short Story Award, shehas also written for radio, stageand screen. She lives in Glasgow.


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