sometimes they found her confused and on her bedroom floor. Aileen dragged the child around three different GPs (‘The medical equivalent of a stage mother,’ as Sean described her), until she got a referral for a paediatric neurologist with a two-month waiting list, and that night she got, for the first time since he had known her, rat- arsed on champagne.
Meanwhile, the au pair did not so much leave as flounce out, and although they needed another, and urgently, Aileen stalled at the idea of ringing the agency again. She took half days off work, and sometimes made Sean take the other half, she rang neighbours and got babysitters in. The childcare, which had been until then a smooth enough affair – at least as far as he was concerned – became insoluble. It was as though she did not want it to work, he realised, one day when the handover went astray, and she ended up screaming down the phone at him:
The guilt and the worry had overwhelmed her, she said later. She just wanted to stay with Evie, all the time.
And Sean said, ‘She’s fine.’
It happened at breakfast time. Evie was always a joy in the morning – ‘You put them to bed screaming,’ Sean said, ‘and they wake up all new.’ Evie sat up in bed at first light and read a book – or just talked to the pictures – then got up at the sound of the alarm clock to slip between her waking parents. She talked non-stop, she wandered and chatted and got distracted. Her mornings were spent in a state of loveliness and forgetting: looking in her wardrobe and not remembering to dress, helping to make the porridge then letting it go cold, trying to walk out the door before she had located her shoes.
On this morning, she was neglecting her porridge for a black-and-white stuffed hen, which she danced across the table with squawks and cluckings, in the middle of which she rolled her eyes back and slid on to the floor. Sean watched her for many seconds before he even tried to make sense of what was happening. Under the table, Evie shook and rattled. Her eyes were open and fixed. She didn’t look at him, but at the wall behind her head, and what disturbed Sean, in retrospect, was the gentle, thoughtful look he saw in her eyes, like someone examining the idea of pain. Her hands were clenched, her right foot throbbed or kicked, and it seemed to him that her body was outraged by her brain’s betrayal, and was fighting to regain control. This was an illusion, he knew, but nothing could quite convince Sean that Evie was not suffering. She made small mewling sounds, as tiny and uncomprehending as when she was newborn, and her mouth drooled and snapped.
Aileen had pulled the chair back, to give her space. She stood over her daughter. Then she ducked down quickly to cushion her head from the hard tiles.
‘Don’t,’ said Sean, who had some idea that Evie should not be touched, at all.
‘Don’t what?’
Aileen’s calm was almost unnatural. She held her daughter by the shoulders, then slipped easily on to the floor and set Evie’s head on her lap, reaching up to hold on to the tabletop with her free hand.
Sean remembered this image with great clarity: the unflattering fold of fat between her knee and thigh, and Aileen, usually so fastidious, with drool smearing her skirt.
Meanwhile, Evie’s clenched hands pumped more slowly, and her lips seemed almost blue.
She was not breathing, he thought.
Evie bucked and bucked and then stopped. She looked as though she had forgotten something. Then, after a moment of great emptiness, her body pulled in a rasping breath. After this came another breath. Aileen rubbed and patted her, making soothing, whimpering sounds and it took a long time to bring the child back to herself – or perhaps none of it took a long time, perhaps the whole thing happened in a very short time; it just felt endless and messy. Evie was confused, Aileen was confused, calling her name, rubbing her back and arms. And then, something shifted and caught.
Evie sat up. She roared. She struggled out of her mother’s restraining arms; outraged, calling the world to account.
He was so proud of her.
There are times when Sean seems to blame me for the failure of his marriage, but he never blames me for what happened to Evie. I coaxed it all out of him on the car journeys we took down to the west; the beautiful small roads along the Shannon beyond Limerick: Pallaskenry, Ballyvogue, Oola, Foynes. We drove with the wide river showing through sun-dappled trees; Sean concentrating on the driving, me safely dressed, neither of us looking at the other, sitting side by side.
Talking about her makes him simple. Sean, a man, as he would himself admit, addicted to winning and to losing – when Evie got ill, all that fell away, and the world opened up to them in a way that amazes him yet.
The morning Evie had the seizure, Aileen rang the neurologist’s office where they had an appointment in a fortnight’s time. They were on their way into casualty. Aileen was in the back of the car, holding Evie around her seat belt, and managing the phone. The doctor’s secretary said, ‘Hang on a minute,’ and she put her hand over the mouthpiece. Then she came back on to say, ‘Dr Prentice will send down the team.’
‘Sorry?’
‘When you come to casualty. Dr Prentice will see you after you talk to her team.’
And she did.
It was, for those first few hours, a kind of bliss. A doctor, two doctors, a bed in the day ward. The consultant arrived; a small, profoundly powerful woman, trussed up in a navy crepe suit. The consultant was kind. She allowed for an MRI scan and an EEG. She used the word ‘benign’, which made them think about brain tumours. She wrote a prescription. She said a lot of nice and reassuring things, many of which were hard to remember.
They walked the hospital corridors looking for an exit, with Evie still exhausted in her father’s arms, and they felt – at least Sean felt – the heaviness and beauty of her head, as it rolled on his shoulder, the mystery of bringing her into the world, and the way she escaped the mystery by being so absolutely and pragmatically herself. They looked around them, memorising their future in this place: the signed football jerseys in their frames, the wire games on wooden tables, and yellowing murals of cartoon characters long gone out of fashion. A cleaner asked were they lost, which they were. A passing nurse said, ‘Do you know your way out?’ There were only two kinds of people in this place – people who were nice, and people who were lost. They held hands. They had never been closer; heading for the swing doors of the children’s hospital and the daylight beyond.
For the next several months they bought and wrangled their way up the waiting lists and the house was run according to Evie’s medical schedule. They rose in darkness, wrapped her in a blanket and carried her to the car. Sean drove as the dawn slipped down the hillsides, filling the bowl of Dublin Bay with a pale mist, and the sun rose out of the sea in front of them, washed and white. In the hospital, Evie was hot and damp and delicious to the touch, as they carried her down one corridor or another to the right waiting room, or the wrong one, where nice people (they were all nice, all of them) took their paperwork or redirected them, and they walked on, looking through the glass panel on each door in case they should stumble into a ward where the bald children were, or the children with scars too big for their small bodies: all the hopeful little freaks. Very quickly, they stopped seeing the children’s diseases and saw them as real children, and this frightened them too: the idea that this reversal of nature could be an ordinary thing. They did not look at their own reflections. Not ever. Each sick, or even dying, child – beautiful as a flower – seemed to be attached to some unwashed parent, who slept on the floor, and forgot to get her roots done, and looked like a refugee.
After the first few appointments, Aileen said there was no point in the pair of them spending their lives down there, she could manage on her own. Then, when the tests were clear, she threw it back at him, saying, ‘You couldn’t even come to the hospital, you weren’t even there.’
It was the relief that made her shout. The diagnosis, when it came, was very terrible, or very hopeful – it was hard to say which. Dr Prentice said that Evie would, in all probability, grow out of the seizures. She did not have a tumour, she would probably not die – unless in her sleep, suddenly, for no reason at all: unless in the bath, or under a car, or in their living room, if she had a seizure while standing beside the fire. There was nothing wrong with her, she seemed to say, except for this thing that was wrong with her. The medication was presented as a choice: seizures or no seizures, you decide.
‘Most people,’ said Dr Prentice, in her kind, crisp way, ‘opt for the latter.’
The pills made Evie confused – at least Aileen thought so. A contented, almost biddable child, she got frustrated and threw tantrums, even in the morning – when all that lovely forgetting was now turned into something more sinister. Aileen thought she might be having hallucinations.
