In everyone's life there is a defining event that steers them off the path they were steadily treading. For me it was my daughter Caoimhe's birth. It was not just her diagnosis that knocked me, but the sheer unexpectedness of it. I had limped through a difficult childhood but in my 20s jobs, boyfriends, opportunities had rattled into place like pieces in a child's shape-sorter. While I put it all down to good fortune, a quiet voice inside me believed you made your own luck. If I ate the right food, worked hard, was a nice person, then I would reap the rewards. Then came Caoimhe, a child with a disability, and the tenets of my existence shattered like glass.
It has been a year since she was born, 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 of them are grey and frayed. But I vaguely remember seeing her face squashed against the membranes like a doll wrapped in plastic, a rare event, which the old wives say is a sign of luck.
When she was a few months old, I developed a sore throat and took her with me to the GP. As I was leaving, the doctor, a brisk red-faced woman with a booming voice, looked at Caoimhe kicking happily in her pram and asked: "Down's?" Just like that. The entity of my daughter encapsulated in a short sharp question. "Yes," I replied meekly. The GP asked my age and then computed the stats in her head. "Ah yes, a one in 350 chance. It's a lottery out there and you were unlucky."
Was I? In those first few weeks of early pregnancy we almost lost her when a scan showed internal bleeding. She was given a less than 10% chance of survival. After that scare the knot of anxiety was ever present. We considered ourselves lucky when a 20-week scan showed a healthy baby moving around my womb like a spaceman in a capsule. Nine hours after her birth, her diagnosis burst the honeymoon bubble that encompasses new parenthood; this time I had really lost her.
For the first few months of her life, 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 mother and child, locked in a rhythm as old as life. Then came the medics in their white coats and stethoscopes, who would poke her and prod her, slice her heels with a razor to draw blood so they could peer at her extra chromosome through a microscope. The prognosis seemed gloomy; babies with Down's not only looked funny but brought with them a whole heap of health problems just waiting to be fixed. Never once after my other two daughters' births did anyone sit me down and reel off a catalogue of woe that might burden me in the ensuing years; glue-sniffing, promiscuity, broken limbs and hearts, and various diseases.
Hours after Caoimhe's birth, the obstetrician was talking about her "intellectual deficit". At the time 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? Now I feel angry. How demeaning to measure a person by their IQ. Still, I admit that intelligence was just one of those things I took for granted, never questioning the value that I placed on it. My partner is doing a PhD in brain science. My two other daughters are quick-witted and sharp as new teeth. Caoimhe had landed with an awkward thump in the middle of a cerebral family - what on earth were we going to do?
But God, how I loved her. It took just a look from those dark fathomless eyes, a touch, to bring me back to the dreamy, fantastic present that is the rite of passage of every new mother.
When I brought her home from the hospital it had been raining and the world was a different place from when I had left it four days ago. Sharper, glassier, somehow. People seemed different, too. They did not know how to respond to the new me, so some chose not to respond at all. When Caoimhe was six weeks old I took her to a party where her diagnosis was never mentioned. People came over to chat politely and then flitted away like butterflies in search of something brighter, tastier. At one point Caoimhe and I were sitting on a couch in an empty room.
On another occasion, when Conor and I met up with some friends at a concert in the park, we found ourselves being ignored. During our attempts to initiate forced and cheery conversation, it was as if Caoimhe did not exist. Despite her smile, as wide as a slash in an apple, they didn't even give her a glance.
On the drive home Conor's knuckles were white with anger, and Caoimhe screamed uncharacteristically. Did she know, I wondered, that there were people out there who would rather she was not around? Who found her too confronting to be in her presence? When I got home I cried buckets for all the averted gazes she was yet to meet, for the blank stares she will puzzle over, for the sniggers and whispers that will confuse and hurt her.
I scoured the media for photos of babies with Down's syndrome but there were virtually none. I looked for children's books, but the only one I could find was My Brother Stephen is Retarded. No thanks. Ethnic children are well represented in the scientific texts of baby management, cookbooks show cheerful jelly babies waving spoons, but the disabled child simply does not exist. My response was to dress Caoimhe in vibrant clashing colours. Forget dusky pinks and pastels, my child was going to be seen.
Her wardrobe was a diversion from the reality of life, which in those early months was too often fraught and grim. Caoimhe was more than 7lbs at birth but was slowly and steadily failing to thrive. When I was not pouring milk into her hungry red mouth, I was attached to a pump, expressing it into a bottle. Day and night I was hijacked to my rocking chair, but it made no difference. She was hospitalised and x-rayed for webbing in her gut; there was none.
One night as I stripped her for her bath, that ever-present knot of anxiety in my stomach did a double twist: she looked like a little scrap of tinned salmon, a bony chain of spine poking through the pink flesh. After that I could not bath her, I could not bear to look. Then an idea came to me: our eldest daughter has coeliac disease and so I went on a gluten-free, dairy-free diet. Within 24 hours she had stopped vomiting and the frothy green nappies subsequently vanished.
With her weight under control, we had more time to worry about the relentless round of appointments that crowded our calendar like a debutante's dates. Eye tests, hearing tests, blood tests, more hearing tests. Time after time the tests came up negative. No hearing problem, no vision problem, no leukaemia. The more specialists we saw, the more my daughter receded from me until she became an object scrutinised by quality control.
With every cold - and there are many - I fear, at best, an ear infection, at worst, death. All the books I have read on Down's syndrome make sober references to the children's extra-narrow respiratory passages where evil bugs lurk and fester; when my back is turned they will march unrelentingly up the tight tunnels of her ear canals and commandeer her brain.
When I'm not worrying about her health, it is her development. At 12 months she is not crawling, and visits a physiotherapist once a fortnight. I try to assign this responsibility to her father because physio is brutal and in the early days it would often end in a mingling of her tears and mine. To stop her legs splaying, we have to shackle her thighs with sweatbands stitched together. Our house is filled with giant foam shapes on loan from a specialist toy library, which will help to get her mobile. Sometimes her vulnerability catches me in the throat when I see her on the floor gamely struggling with her exercises while her dad sings "Hey, hey, hey de ho, the great big elephant is so slow".
I went through a phase of believing that every moment in her life had to be a learning opportunity. I'd chat to her endlessly about my day, telling her what I was doing in bright primary vernacular: "Look Caoimhe. Mammy's baking a cake. Here's an egg. Look, I'm cracking the egg. Look Caoimhe, mammy's cracking up." For a time I felt I was. I remember overhearing Wynnie, my middle child, sadly saying to herself: "Mammy only likes babies," and felt that serrated knife of guilt twist in another inch. Meanwhile Caoimhe would watch her all-singing, all-dancing mother from her highchair, head slightly cocked to one side, gentle eyes quizzical.
Over the year, my love for Caoimhe has become all-consuming, intense, passionate but not perfect. There are times when I am angry with her for arriving like a cuckoo in the wrong nest. These fleeting moments drift like floaters across my eyes and are more prominent when I feel overwhelmed with the responsibility of it all. That is not to say that it is not rewarding: it is. At 12 months Caoimhe is not so very far behind her sisters when they were that age. She can say mama and dada, delights in pulling her sisters' hair, plays ball, bangs blocks and bugs the hell out of the cat. Socially, she is streets ahead and possesses a remarkable knack of engaging people.
I wish I had known 12 months ago what I know now. In those bleak, dark days in hospital, one of my biggest fears was that I would not like her, would be ashamed of her.
Never. Here she is, a little girl on the eve of her first birthday, so close to crawling away from me towards a life of her own. Her ready smile is only a second away, her love abundant but discerning, with the best bits saved only for me. Life with Caoimhe is life distilled to its purest essence, to love and be loved. This is her present to me. Happy birthday, beautiful girl.
