Sunday 18 February 2018

They dismissed my daughter

Kathy Evans has experienced every emotion under the sun since a nurse perfunctorily told her that her baby girl had Down syndrome -- from grief and worry to love and pride -- but mostly she has felt anger at all the people who dared to underestimate little Caoimhe

SUNNY OUTLOOK: Kathy Evans returned to Australia because the Irish climate was harming her daughter’s health
SUNNY OUTLOOK: Kathy Evans returned to Australia because the Irish climate was harming her daughter’s health
Wherever she lives Caoimhe radiates warmth, wit and happiness as Kathy describes in her book ‘Tuesday’s Child’

Kathy Evans

There are six girls in my daughter's ballet class and they are standing in a line at the bar. Each one wears a pink leotard and has her hair neatly tied in a pigtail or a bun. Except the smallest child at the end of the row; her hair, the colour of honey, is wild and dreadlocked and sits on her head like a raided birds' nest (she refuses to have it brushed).

Her pink leathered toes are less pointy than her contemporaries and she holds her head slightly at an angle, mouth ajar, concentrating hard. Her glasses have slipped down the bump of her nose as she moves to the rhythm of the piano music. This little girl is my daughter and the ordinariness of this tableau is something I thought I'd never see.

Caoimhe, who has Down syndrome, was born just over five and a half years ago, close to midnight, still intact in her amniotic sac. One of the sadnesses I carry is that the joyful memories of her birth have been overlaid by the shocking ones of her diagnosis, so that the edges are grey and frayed and I have to work hard to retrieve them. But I vaguely remember a labour that began as the sun melted into darkness; the smell of incense, the hands on the clock creeping close to midnight, and the intensity of pain that engulfed my body in a tidal wave and finally thrust her into the waiting arms of her father and my close friend. I remember looking down at her and seeing her face squashed against unbroken membranes like a doll wrapped in cellophane, a rare event which the old wives say is a sign of luck.

Luck, of course, is a matter of perception. My euphoria at her birth was punctured nine hours later, not so much by her diagnosis, but the brutality in which it was given. Several nurses had asked me whether I had undergone prenatal testing -- I hadn't. Finally it was a midwife, dried-up and cylindrical in shape, who hurled a hand grenade into the centre of my post-partum bliss. While she was making my bed the next morning as I sat feeding Caoimhe in a chair, she said, out of the blue: "We think your baby has a chromosome error." When I, panic rising, pushed her further as to what she exactly meant, she added: "Down syndrome." And there it was. The words hit my lungs and left me gasping. "I'll get the doctor" she said, and hurried off.

To this day I wonder at her cruelty, whether it was intentional or not. Was the image of a mother so wrapped up in her new baby something she needed to destroy? Or was it simply that babies born unexpectedly with Down syndrome are such a rarity these days, no one knows quite what to do or say?(I later received an apology from the hospital over its handling of her diagnosis.)

From the moment of her diagnosis, at 9am on that fateful day, she was marked. She was no longer my child, flesh of my flesh; in an instant she became a medical anomaly, a child with a disability, nature's mistake and the visible marks of her disability are always the first thing people see.

When she was a few months old, I developed a sore throat and took her with me while I visited a GP. As I was leaving with the reassurance that I had just a mild virus, the doctor, a brisk, red-faced woman with a booming voice, looked at Caoimhe in her pram and asked "Down's?" Just like that. The entity of my daughter encapsulated in a short sharp question, unexpected as a bullet. She asked my age (36 at the time) and computed the stats in her head. "Ah, yes, a one in 350 chance. It's a Tatts' lotto and you were unlucky."

Was I? I didn't feel unlucky, but there were times when I was angry. I had limped through a difficult childhood but my twenties were the alchemy that turned alloy into gold. Jobs, boyfriends, opportunities rattled into place like pieces in a child's shape sorter. And while outwardly I put it all down to good fortune, a quiet voice within believed that you made your own luck. If I ate the right foods, worked hard, was a nice person, I would reap the rewards. I naively believed these simple measures would propel me through life. And then came Caoimhe. The baby I had dared to expect had vanished. The dreams and fantasies I had built over the past nine months evaporated like clouds under a desert sun.

Joy and grief had me in a tug of war. She was a beautiful baby, but she had a disability. When I was alone with her, when it was just us two, we were a mother and child, a symbiotic organism locked in a rhythm as old as life. Then came the jar of the medics in their white coats and stethoscopes, who'd poke and prod her, slice her heels with a razor so they could peer at her extra chromosome through a microscope.

The violence of it all appalled me. Even for 2003, the prognosis seemed gloomy; babies with Down syndrome not only looked funny, with more than 100 physical abnormalities, but they brought with them a heap of medical problems: numerous respiratory infections in childhood and an increased risk of leukaemia; hearing and sight problems, thyroid malfunction, Alzheimer's and an early death at around 55.

The perfect shell of her newborn body would soon split and crack as she grew awkwardly clumsily, revealing an underdeveloped nasal bone, a large tongue, mottled skin and short arms and legs. At the back of the handout was a list of diagnostic tests I could have in future pregnancies and l felt humiliated, chastised. The smudged photocopied image of a large needle piercing the amniotic sac close to a curled up foetus, stung like a slap in the face.

I remember at some point the same nurse who had given me this information telling me, "really she's just like your other two children, she'll do everything that they do only slower", and I puzzled at the absurdity of this statement. After their births no one had sat down and made a prognosis of their future or given me a sobering list of all the awful things that could go wrong. And while I know that we all exist at random, that the spectre of death can single us out at any time, I had a mental script of how their lives may progress: school, college or job, marriage, kids, not necessarily in that order. Caoimhe's future was one that I couldn't begin to imagine.

I knew she would not do everything my other children are able to do. She would not lose herself in the rich infinite landscape of higher learning, nor be gripped by wanderlust and travel the world with a rucksack. I found the modern jargon to describe her condition baffling. Retarded is replaced by 'developmental delay' as if, like a train running behind schedule, her ordinary skills will arrive eventually. I had no doubt the basic mechanical ones would; it was the complex cerebral ones I grieved for. Both friends and professionals urged me to focus on the positives, without dwelling on her limits, as if regret and hope, pleasure and disappointment could not coexist within my consciousness. The pendulum swung between minimising her condition and magnifying it to frightening proportions.

Hours after the magic of her birth, the obstetrician was talking about her intellectual deficit. It did nothing but fill the emptiness created by her diagnosis with churning worry. Would she read a book? Write her name? Sing a song? Certainly it never crossed my mind she'd do ballet.

Now I feel angry. How demeaning to measure a person by their IQ, especially when she was a few hours old. How typical of our culture. I remember another doctor talking about all the things she may be able to do when she was grown up: gardening; meaningful work in a sheltered environment. "Down's children are very lovely, they're just not very bright," she told me.

The curdle of anger is ever present when I think back to those early months; the myths and misconceptions passed off as fact and delivered with the authoritative stamp of a someone in a white coat. But rage rarely bubbles up alone and I take care not to nourish my anger and let it distract from the real feelings of hurt and fear and disappointment that lay beneath like scarlet wounds. Diagnoses are easier if they do not come within hours of giving birth, when you are so soft and vulnerable and so easily prey to the phantom of a faraway future, frightening and alien.

When I brought her home from hospital it had been raining and the world was a different place than I had left it. Sharper, glassier somehow. People seemed different but of course it was me who had changed. I belonged to a new group of individuals, those touched by grief. I no longer had time for superficial friendships. I could only connect to the raw stuff that makes us human.

People did not know how to respond to the news. We were lucky to have family and a close circle of friends who

accepted her immediately, but stepping outside the warmth of their embraces was a jarring experience. When Caoimhe was six weeks old, and I was slowly and painfully beginning to circulate, like blood to a frozen limb, I took her to a party where I met a woman who'd given birth a few weeks before I had. Despite our common bond, our chatter was formal and awkward, like foreigners handicapped by different mother tongues. We recounted our stories of labour, whilst ignoring the screaming obvious. And when she moved off to feed her crying baby we smiled at each other, relieved to be rid of the burden of pretence.

And so I continued to blunder my way through the first two years of her life; laughing, crying, loving and raging, sometimes all at once. I read somewhere that it takes three years to get over the shock of the diagnosis and by then I did find myself washed up on the shores of a new normality. By this point we had returned to Ireland from Australia, where we had spent the previous 10 years, because we wanted to be closer to my partner's family in Dundalk. To keep the children in a Steiner education they'd begun in Australia, we ended up living in Holywood, County Down, where there is a school that follows these alternative teaching methods.

Here, Caoimhe started kindergarten and I entered a dalliance with both public and private education systems that caused tears, frustration, moments of clarity and eye-prickling pride. Her teacher was initially reluctant to take her on and asked me, worriedly: "but is she continent?" This same teacher enabled Caoimhe to be an angel in the nativity play and helped her skip around the Maypole at the spring festival. I like to think that despite her initial reservations, Caoimhe's presence in the class was a benefit to the whole school community; that the burden suggested by her diagnosis proved if not imaginary, at least balanced by what she had to offer.

What helped, I think, was Caoimhe's ability to communicate. Right from the start, I was determined that she would talk. I admit that part of my motivation was entirely selfish; I wasn't comfortable with sign language; there is still enough English reserve left in me to feel embarrassed at public displays of wild hand gesticulations. So I invested huge amounts of time in her speech. When she was a baby I would sing the alphabet phonetically; I filled the house with strains of Bach and baroque music, which is supposed to be good for developing the brain's synapses. And I would babble to her constantly: "Look Caoimhe, mammy's cracking an egg! Look! Egg! Look! Mammy's cracking up!" And she would look at me, her head tipped slightly to one side, wearing a quizzical expression.

I carried her a lot, so that she could read my face, my lips. I would have conversations with her on my hip and look down to see her watching, miming the movement of my mouth. And slowly the sounds came, rising like smoke rings, morphing into real words. I carried her out of babyhood into toddlerhood and beyond; today I carry her less because it's physically not possible, but still she clings to my leg saying, "Mummy, I can't see your face."

From an early age she was able to hold complex conversations, sing songs, make up stories and tell jokes. In some ways, she is a precocious child, eccentric, stubborn, a natural entertainer with the wit of a typical five-year-old.

The other day we were lying under a big swaying tree and Caoimhe goes: "Knock, knock."

"Who's there," I say.

"Tree," she says

"Tree who," I say

"Tree-mendous!" she says gleefully and waves her legs in the air, thrilled, I think, not only with her own joke, but her mother's reaction.

The doctor was wrong when she said Caoimhe would not be very bright, for my daughter has amazed us with her intelligence, perceptiveness and understanding. This however, brings its own pain; Caoimhe is aware of what she can't do, as much as what she can, and straddles two worlds; too sophisticated for institutions and special schools, but somehow too vulnerable for the society in which we live.

She relates well to adults but is shy around other children; she knows she is slower on the slide, awkward on the climbing frame and I wonder if she senses their frustration at having to wait. Her voice, so large and happy at home, is reduced to a whisper in the presence of her peers. I wonder if she is as aware of her physical differences, as other children are. When one small girl asked Caoimhe why her eyes were funny, I had to resist the temptation to snarl: "You want to make something of it, big ears", or jump into a pompous lecture about people's differences, and merely acknowledge, quietly, on Caoimhe's behalf that, yes, her eyes are a bit different, they are a beautiful almond shape.

We stayed in Ireland for three years before heading back to Melbourne, partly because the climate in Belfast was so hard on her health. That first winter, she was struck with an endless run of those predicted respiratory infections as well as scarlet fever. The second winter, living on a remote farm in the Holywood hills, saw another bout of scarlet fever and a week of pneumonia where her lips looked like ripe strawberries in a face as pale as cream. We have recently discovered she has coeliac disease. Since removing gluten from her diet, her health has improved dramatically. My life, since Caoimhe, has undergone an internal revolution. It is as if it has been wrung through an industrial car wash and emerged shattered, shocked and scrubbed. What I have discovered is that the human capacity for burden is surprisingly flexible. And, yes, there are times when mothering her does feel like a burden. And then she smiles at me and I am warmed by the radiance of her being, all doubts burned away like smoke haze.

I can't help but wonder at how the comfortable landscape of my past life has been transformed into a series of complications from which I ricochet, one to another. Life with a disabled child can sometimes feel like a series of battles to be fought and overcome. Still, at the interface between each one is a space where I can revel in the happiness of her being, a place where love finds a voice.

I wish I had known at the start what I know now. In those dark days at the hospital where her diagnosis was given and received with awkwardness and apprehension, one of my biggest fears was that I would not like her, would be ashamed of her.

Never. I am watching Caoimhe doing ballet, with a bursting pride. She takes her place next to all the other perfect pink and white children as they prepare to curtsey to their teacher. She wobbles slightly, her forehead compressed with the effort. And then it is done, and her face splits into an enormous grin which fills the room like sudden sunlight. I look at other parents, I look at the teacher and they are smiling too. Her joie de vivre is too big for me alone and I enjoy sharing it.

This is one of those moments in my day, so pure and powerful, mere words cannot do them justice. There is no language for love this big. You have to feel it and if you do, you are lucky.

'Tuesday's Child' by Kathy Evans is published by Gill & Macmillan, €12.99

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