SYNDROME

March 2008. We are sitting in the geneticist’s office in the Children’s Hospital in Crumlin. We have come for test results, for answers, are strung tight as guitar strings. Carys is sitting on Conor’s lap; she is nearly two and a half years old, but she looks like a six-month-old. She should be walking, but she’s not. She should be talking, but she’s not. She sits in the halo of Conor’s arms, eyes the colour of water, dark ringlets of hair that would be the envy of any Irish dancer, her little body bloated by steroids, just one component of the chemical elixir of life that sustains her. Beside me are our two boys; Mal, four, is pushing two toy cars along the arms and back of the chair he should be sitting in, while Cai, six, is battling Pokemon on his Gameboy. The geneticist wanted to see the whole family together. I wonder if his eagle-eye is pinpointing the faulty gene in all of us.

In the early days following Carys’s birth, the discussion around her condition fractured into multiple possibilities without resolution. Everyone had an opinion: Noonan’s Syndrome, one doctor suggested when she was only two days old, pointing out the long list of her defects. I turned over the leaflet he left us with, one small sheet of paper, the sum of our knowledge. I would later find out that Carys’s syndrome is often mistaken for Noonan’s, as they share the same genetic pathway. PHACE Syndrome, possibly? Turners, said another, or maybe Costello? But that’s over two years ago, and since then all thought of syndrome identity has been driven from our minds as we struggle just to cope with Carys’s ever expanding repertoire of abnormalities and development delays. There are things you can see—the angry red haemangioma which claimed her forehead and grew so big it threatened to blind her; the seizures which jerk her body as if she is possessed; the facial features which mark her as different, like the lack of eyebrows, no bridge to her nose, the low-set tilted ears, drooping eyes—and there are those you can’t see: the low level of cortisol that complicates every minor childhood disease; the sensory processing disorder; the messed-up messaging service between brain and body that prevents perfectly workable limbs from functioning; the hypertrophic cardiomyopathy that will one day stop her heart and prematurely end her life.

‘It doesn’t change anything,’ the geneticist warns, picking up the report that lies on his desk. ‘It’s just a label, just words.’

It’s not that we want to label our daughter. We know that syndromes are genetic conditions that can’t be unpicked and rewoven into a more favourable design. Carys will still have all the same disorders which will continue to be treated in the same way with the same drugs and therapies; the physio, incorporated into daily play, that will one day get her from sitting to crawling to walking, the messy play that will desensitise her hands and mouth, the deep massage that may lead to hair washing that’s free of screaming, the eye-gaze training that may lead to meaningful communication. Her life, our lives, will not be transformed because this thing which shapes her suddenly acquires a name. There is no cure to be found. It simply is, and life goes on. But still, we need to know.

Because having a diagnosis makes a difference in a way the geneticist fails to comprehend. It means you find your tribe: other children with the same condition, and their parents and siblings. A whole new genetic family you never knew existed. A community, marginal in the context of wider society, but where you and your child are unconditionally accepted and understood, where you can rant and let off steam, give and receive comfort, learn from other parents, and generally share in the ups and downs of raising our unique children. This new ‘family’ may be distributed around the world, but that doesn’t matter; technology makes us neighbours.

The geneticist passes the paper to me. It flutters in my hand, a poorly photo-copied document from the Children’s University Hospital in Manchester, England. He is still talking, but his voice recedes as I scan the page, my eyes fastening on these words halfway down, in bold:

This result confirms a diagnosis of CFC Syndrome in Carys Walker.

The print blurs as my eyes fill. I fluctuate rapidly between elation and despair, back and forth, back and forth. I am sucking in air as if I have just run a marathon. We have a diagnosis! But what does it mean? I have no idea. I blink, and a series of numbers and letters swim into view: a heterozygous mutation c.1406.A (p.Gly469Glu) in exon 11 of the BRAF gene is the cause of Carys’s condition. My mind stumbles over this unfamiliar equation which sums up my daughter’s body, flesh and blood reduced now to maths, a series of unintelligible numbers and letters, stark in black and white, a formula that explains what but not why or how, set out in precise, minute detail that can’t be argued with. It is official. It is final. It is definite. CFC. Cardiofaciocutaneous Syndrome. We now know… but it is all we know.

Today, in 2020, the Rare Diseases website says this: CFC is a ‘disorder that affects many parts of the body, particularly the heart, face, skin, and hair. People with this condition also have developmental delay and intellectual disability, usually ranging from moderate to severe.’ It goes on to list 120 symptoms, many of which Carys has. But in 2008, in the days following Carys’s diagnosis, such information is not available. Google does, however, introduce me to CFC International. Scrolling through a gallery of photos reveals dozens of cute children who look just like Carys, and it strikes me: these children are happy, enjoying their lives. Knowing your syndrome is a beginning, not an end. The website gives me articles written by parents that bring tears flooding; they could be describing my life, my child. I realise I’m not alone anymore, existing on the periphery of society with my mysterious daughter. There are others out there just like us. An email to one of the founding members of the group in the US brings a response as soon as time differences allow, bearing words of kindness, welcome and hope. I register Carys and join the parents’ Facebook page. This is our new beginning. Carys has a syndrome, and now we know its name. We know what it looks like, and how varied it can be. There will never be a cure. It is something we have to learn to live with, and accept. It is as much a part of our family as Carys is herself.

ENLIGHTENMENT

October 2018. I am sitting in a crowded lecture hall. I am struggling to breathe, struggling to stem the tide of my grief, before it breaches the containment of my skin and washes into the public domain. My grief is a personal thing; I only allow it to surface when there are no witnesses. Like in the car; the car is a good place to cry. I’ve only been caught out once, and that was by a friend whose two-year-old child had died from a rare leukaemia. I had just dropped my boys at school; Carys was in her car seat, we were still in the car park. It came suddenly, without warning, a storm of grief, and I couldn’t drive because I could barely see; all I could do was let it come, and pass. And then, the tap at the window, the lowering of glass, the struggle for composure, and eye contact. She understood immediately, before I even said a word. I cry in the car, too, she had said.

Being a student allows me to be someone else, someone not defined by the state of motherhood, by the shape of my body, or societal expectations. University is my sanctuary. I sit in cafes between lectures with fellow students, and we talk about Frederici, Foucault, Zemon-Davis, Ladurie, or the latest essay we are working on. At uni, there is neither space nor time for grief. The persona of student I adopt is the dam that holds back the flood; this acquiring of knowledge builds a wall around me and makes me feel strong, more than just mother. But now, in this lecture hall, the student has cracked open, crumbled by a weight of words, revealing the fragile mess of motherhood I really am. I could get up and leave, but then I’d have to turn my back on the stage and face the three hundred faces of my fellow students. I’m not sure I’m strong enough to show them the spectacle of my grief. Nor do I want to miss what else is being said.

Because the woman on stage is talking about bodies and borders, queer bodies and ableism, biopolitics and neurodiversity, the monster and the disabled. There are words pouring from her throat that I have never heard of but which resonate with such clear and relevant meaning: the ‘Crip Stare,’ ‘Disabled by Association,’ ‘Other,’ ‘Abject’… they are words which explain my lived experience. I don’t want to hear them, these parcels of sound which convey the sum of my life with Carys, but I can’t tear myself away. I’m reminded of another lecturer standing on that stage, a young man discussing Althusser’s theory of structuralist Marxism. ‘Meaning given to words is arbitrary and relationary,’ he’d said. ‘There is no inherent connection between a word and what it designates.’

I didn’t really understand then, but now, in connection with the example of my life with Carys and the light that is shining out of a Disability Studies lecture, I am beginning to. Words are just sounds without the ideology we create for them, and that can be changed, extended, distorted at will. There is a boulder in my throat no amount of gulping will shift. I want to leave before I start sobbing, sounds which clearly express meaning across boundaries of language and culture without the need for words, but I am pinned in my seat by the twin fears of missing something important, and drawing attention to my weakness as I flee.

CRIP STARE

Strangers are good at spotting what my loving eyes have grown blind to. As a shy person, I don’t do well under the spotlight; it suits me that as I age, I am slowly turning invisible. The disabled may be collectively shunted into the shadows of institutions where they cannot be seen, but their difference is a brightly burning beacon; the disabled person out and about in society can never be anonymous, or invisible, no matter how much they might wish it. Carys has always drawn the public gaze, even as a baby, innocent and unaware, asleep in her buggy. I watch people recoil from her as if her appearance is in some way offensive. In disability studies, this gaze is known as ‘the crip stare.’ Starers don’t want to look, perhaps out of embarrassment or shame, but they can’t look away. This is the fascination we all have for the abject. Think of bodily fluids as an example of something which is abject: menstrual blood, sweat, spit, snot, urine, faeces, mother’s milk… they are all produced by our bodies and yet the vast majority of us are disgusted by them. We feed mother’s milk to our babies, yet how many of us are willing to taste it? In the same way, Carys has been produced by a human body, yet is rejected by the starer as an abject object. The eyes of the starer then travel to me, up and down me actually, seeking the answer or the cause in the mother’s body; they are making me disabled by my association with a disabled person. They see that I am watching them staring at Carys and me, and they look away. Often, it’s just embarrassment; most people don’t mean to be rude or hurtful. But sometimes, that look away is dismissal, denial, rejection.

It is down to the disabled person, or their carer, lover, friend, whomever they are with, to find a way to manage the staring. For me, it has been a long and difficult process; my fierce protection of my daughter, my sense of outrage on her behalf, the unfairness of it all, would fire me up with overwhelming feelings of anger. It made me vengeful and confrontational; I’d return a stare with a challenging stare of my own, words forming on my lips such as ‘Got a problem?’, ‘Never seen a disabled person before?’, ‘Don’t you know it’s rude to stare?’ but I never gave in to those urges because I wanted to raise awareness, not barriers. It’s impossible not to see the staring, but I have learned to view it from a vantage point of detachment. As long as Carys lives and breathes and moves in public spaces, she is going to be a focal point. I don’t want my body to become a well of fury and resentment.

Father’s Day, 2019. Conor and I take Carys out for cake. She loves cake, but especially carrot cake. As Conor parks the car, I hold Carys’s hand and we meander slowly towards the café; she can walk a little now, with support, and it is a huge achievement, and a wonderful freedom not to have to bring a wheelchair. This simple thing, this act of walking beside my daughter, not behind her wheelchair, of holding her hand as she walks, not the wheelchair handles, this mundane, everyday thing that we have worked so hard for, fills me with joy. The sun is shining, the car park is not busy. A woman and three children walk around us. The mother pretends she doesn’t see us, no friendly ‘Good morning!’ The children unconsciously slow their pace and stare, the two youngest turning away when they realise I have noticed. The oldest, a girl probably about thirteen, the same age as Carys, moves her eyes to me and does not disengage. I smile to try to show her there is nothing threatening about us; she does not smile back, but continues to stare. Her intensity surprises me; the young are usually curious, not hostile, when they encounter Carys. They gravitate towards her with serious faces, and are open to simple explanations before their embarrassed parents whisk them away and spoil the opportunity to nurture acceptance. But this girl has clearly never been taught that staring is anti-social, and is not corrected by her mother this time. It may be a minor incident, but to go out of our front door is to experience any number of repeats throughout the day, every day, for the entirety of Carys’s life. I can only take so much; after a while, it gets tiresome.

In her book, Staring: How We Look, Marie Garland-Thomson cites the works of artists Doug Auld and Chris Rush, which challenge viewers to ‘go ahead and stare’ without recrimination or guilt. Auld painted the melted faces of burns victims and exhibited the series entitled State of Grace in 2005. His intention was to enable viewers to freely stare at his representations of these distorted faces and through doing so come to recognise our shared humanity and fellowship. Similarly, Rush’s drawings feature close-up portraits of adults and children with disabilities; his collection was exhibited in Brooklyn in 2006. Carys was not even a year old then, the full extent of her condition yet to be revealed. It is twelve years later that I come across these images, yet even viewed from a screen their impact is no less. The subjects’ eyes seem to gaze back into mine with openness and honesty; there are no barriers, no defences. The initial shock is a collision of the blemished with the unsullied.

The work of both artists is rendered with empathy and dignity, and the message is clear: stare as much as you like, and you will not fail to see these people are as human as you and I. Their intention is laudable, but I can’t help wondering whether these exhibitions genuinely change viewers’ perceptions, or whether they merely stir feelings of pity. Do they reinforce the disfigured and disabled as spectacle for the public gaze, and enforce the right to stare?

In their collaborative essay, ‘What her Body Taught (Or, Teaching About and With a Disability): A Conversation,’ Garland-Thomson discusses such questions with Brenda Brueggermann and Georgina Kleege, all of them disabled and professors of English. Bruegermann makes the point that being accepted into mainstream society has its risks for disabled people. She refers to disabled models in high fashion, claiming that whilst it is certainly a positive move, it also means that ‘disabled people are being commodified, fetishized, conformed and exploited in advertising, too.’ If modelling in high fashion empowers some disabled individuals, it must surely be a good thing. But putting imperfect bodies centre-stage in an unscrupulous industry founded on unrealistic concepts of idealised, able-bodied beauty can also be read as titillation bordering on the carnivalesque, rather than promoting genuine acceptance. The emphasis is unbalanced, focussed on the body, not the person.

It’s ironic that I came to university to escape disability, and found myself in a disabilities studies class. I came here to study English, to read books and to write essays, to lose myself in pretty patterns of words on a page, in the rhythm and rhyme of poetry. I came to escape my reality. But the study of English has broadened to include contemporary literary theory, new important texts and ideas that scrutinise the human experience. Suddenly, the two worlds I inhabit have collided. New concepts have entered my consciousness, new words I never knew I needed.

RETARD

Sparked by words uttered by a woman at a university lectern, my mind is racing, jumping back and forth between memories, straddling time differences, driving one experience into the next: my younger self is sitting in a café just off the main road in Skerries. It is almost empty, because the morning is still new. I am meeting a friend after dropping the boys at playschool. My body is still raw from childbirth, my emotions even more so. Going into a café with Carys is a big deal. The sun is shining in through the large bay window, highlighting the honey tones of the wooden floor and gleaming off polished chrome. The rich smell of coffee swirls through the air as the hiss of steam foams milk for my cappuccino. A single pink carnation pops in a glass on the table between my friend and I. It looks real. It would all be so perfect, were it not for the baby crying. My baby. Carys is propped on my lap; despite endless visits to hospital and an ever-increasing team of medical specialists, she is still a mystery to us all. She cries and cries, and I can’t stop her, and I don’t know why or what to do.

There are only a handful of customers in the café. Other mothers sip their coffee, oblivious; the great and varied cacophony of childhood is simply the soundtrack to their daily lives. But to those who have forgotten, or have never raised children, the grating sound of a child who will not stop crying is anathema. I intercept irritated looks and meaningful exchanged glances. In a similar episode some years in the future, a woman will approach me and say, ‘Will you not do something for the poor child?’ before walking away sadly. Back in Skerries, I am caught between a stubborn determination to enjoy a thing so mundane as a cup of coffee made for me in a café and an overwhelming desire to be anywhere but here.

And then the matter is taken out of my hands.

‘She’s RETARDED,’ my friend announces to the café loudly.

I am stunned.

The R-word, said of my daughter, hangs in the air between us like a solid entity.

Carys… a Retard. I must be naïve; I have never considered her in such terms.

It’s just a word. But words encode a variety of social meanings which can morph way beyond the boundaries of their original intention. If words weren’t important, scholars wouldn’t spend so much time arguing over them. We wouldn’t have debates over ‘political correctness’. We wouldn’t have to amend the Oxford English Dictionary every year.

So I resort to the Oxford English Dictionary online, and find that the definition for the word ‘retard’ is: ‘Delay or hold back in terms of progress or development… A person who has a mental disability (often used as a general term of abuse).’ Like other abusive terms, this one is a word hijacked from its original meaning and used as a weapon against the disabled: an abuse of language, and of person.

Sometimes, words are uttered with the intention of bringing solace, comments that I know are well-meaning, but which break my heart all the same. Words of wisdom like, ‘Special children are only given to special parents.’ The reality is that all our children are special. Carys is not made more special by means of her disability. She is as special to me as each of my two boys. As for me and Conor, we are as ordinary and average as most other parents. We struggle with the responsibilities of parenting, make mistakes, love our children, and do the best we can, just like everyone else. Calling that out as in some way special only highlights our inadequacies, reminds us that what we are doing is different, that our daughter is different. And that is ostracizing, not accepting.

It is dangerous to use words like ‘special,’ and here’s why. One day, when my oldest son was about five years old, I picked him up from Montessori. He sat in the back seat of the car, strangely quiet. Usually, he was full of chat about his day. Then his lip began to tremble, and the story burst out of him in a tumble of words and tears: there was a disabled girl in his class and that day she had hit him and pulled his hair and his teacher said it was because she was special like his little sister Carys. For a second, I found myself inside his vision of a future with a disabled sister whose bad behaviour was accepted and never dealt with because she was ‘special.’ I pulled the car into the kerb, and sat beside him in the back till he calmed down. How to explain this to a five-year-old? I did not want him growing up to fear and dislike anyone with a disability. All children are special, I told him; and we will all teach Carys not to be naughty and not to hurt others. But sometimes, children like Carys don’t understand that hitting and pulling hair hurts, so we have to be kind and patient, and not be angry with them. And because he was a beautiful, innocent, forgiving five-year-old, he accepted this, and felt better. What we tell our children, and each other, matters.

When people say to me, ‘We’re praying for a cure,’ I just smile and say, ‘Thank you.’ I want to say how useless prayer is, that if there is a God, he chose to make Carys this way and is therefore guilty of child abuse and should be punished in whatever way gods are punished. I want to tell them that Carys’s condition is genetic, affecting every single cell of her body; there is no cure. But I bite these words back and swallow them, where they fester.

Possibly the most shocking comment I have ever received is this one: ‘What a blessing to have a disabled child.’

It is no blessing to watch your child suffer and be unable to protect her, to know she can never have a normal life, to watch people recoil from her because she is different, to know that she will probably die before I do. What kind of a blessing is that?

Topping the charts, though: ‘I don’t know how you do it; I couldn’t.’

Do what, exactly? I never thought I could ‘do it’ either, but I didn’t have a choice. I can’t help but wonder if these comments bring comfort to the giver rather than the receiver.

When I posted these experiences on the CFC Facebook page, I was astonished by the responses, which came in faster than I could type replies.

‘I was told, She’ll grow out of it. Hello! She has a genetic disorder!’

‘My family tell me to treat him normal and he’ll be normal.’

‘Yes, my family says my boy is special needs because I let him be like that, that I’m looking for a label. They say he’d progress if I stopped babying him.’

‘I was told, He looks like he hates his life. Actually, he’s more laid back and happy than my typical child.’

‘Someone once said to me, All you can do is love him like your other kid and hope for the best, which really upset me. Why the heck wouldn’t I love him like my other kid?’

‘Someone said to me my child was born with special needs because of the IVF treatment.’

‘I was told, She will run one day, and then you’ll wish she couldn’t. Um, I don’t think so!’

‘A relative once said to me, Take more photos in case he dies.’

‘Your child is a gift from God.’ (Many people had been told this.)

‘I was told to pray, and Jesus will heal her and make her normal again.’

‘Someone said to me that God had made a mistake, that my child should never have been born alive.’

‘God needs to know that a gift is a bottle of wine or a holiday, not a child with disabilities. It’s hard, isolating, exhausting, upsetting, pushes people to their limits.’

My heart sank, reading these comments, but strangely, there was also solidarity. These words we had been given had created more upset and outrage than comfort. We were shocked, reading each other’s experiences, but the sharing drew us together, creating a buffer against future words to come.

Back in that Skerries café, in the awkward silence which follows, I wait for an apology which doesn’t come. Our eyes slide past each other, and we can’t seem to find any common ground. We drink our coffee, and leave, our friendship eroded by a single word that revealed how very different our values are, a word which becomes a barrier between us we can’t tear down.

NON-VERBAL

Technically, Carys is non-verbal. She is also non-mobile, and dis-abled. In almost every aspect of her life, she is defined by words which express that which she is not. This peculiarity is not found anywhere else in society. Other minority groups are defined by who they are: black, gay, pagan, etc., not by what they’re not, non-white, non-straight, non-Christian. To make things worse, all people with a physical or mental difference are lumped together under the one banner—disabled—yet all disabilities are not the same. Someone with a missing limb can still function normally in society, hold a job and a conversation, own a home, drive a car, have and raise children, become a great athlete; how is that disabled? Someone may have little control over their physical body but hone a great mind, and contribute fully to society, inspiring us daily, like Stephen Hawking. Some have invisible disabilities, like autism or ADHD, and others have mental disabilities of varying degrees requiring more care and attention than others. But they are all still human; they share our same need for love, nurturing, shelter, sustenance, acceptance, belonging.

Carys is not non-verbal. She can make lots of sounds, and she is extremely vocal. There is nothing she loves more than a vocal exchange. She understands turn-taking, and how to respond when I ask her to ‘say’ a sound I make, though she often chooses not to comply, or makes a game of it by ‘saying’ the wrong sound, and then laughing at my reaction. Carys has a lot to say about the world around her. She makes eye contact and babbles, her intonation rising and falling for all the world like any child telling me something they think is important. I have no doubt that for Carys, every sound she makes has meaning, just like the sounds I make have meaning. She speaks in tongues I don’t understand, a language I can’t learn because there is no Rosetta Stone. Instead, speech therapists try to force her to learn our language, but the same problem exists in reverse: no translator, no Rosetta Stone to help her. To Carys, the sounds we utter are as nonsensical as hers are to us.

But I know she understands when I ask her to ‘hug Mammy,’ because she does; she understands and responds appropriately (most of the time, depending on her mood) to other commands too, such as sit down, stand up, come to mammy, give me a kiss, clap hands, and so on. When I tell her it’s time for bed, she knows to walk to her bedroom, although she will often try to delay the inevitable by visiting every other room along the way; when I tell her it’s time to clean her teeth, she turns her face away; when I tell her we’re going for a ride in the car, she heads for the front door. I suspect she understands far more than she can demonstrate, so I always try to explain where we are going, what we are doing, and why. When I ask, ‘Carys, are you a happy girl today?’, she performs her little ‘happy dance’ in confirmation, and I say, ‘Good dancing!’ and she shrieks with delight and waves her hands excitedly. She adores praise. When I say, ‘I love you,’ she replies, ‘voo voo voo’; it sounds like ‘love you too.’

OTHER

May 2010. I am sitting in the psychologist’s office. Carys is playing on a mat beside me on the floor. She is four and a half years old, and she has come to be assessed before starting school. The assessment involves observation and filling in questionnaires concerning her behaviour. The psychologist is a gentle man who asks probing questions. He is easy to talk to. After an hour or so, he looks at me and says, ‘You’re still grieving.’

My mouth hangs open as my tongue stumbles over potential responses, none of which make it to words. Although I had never put conscious thought to it until that moment, I know instantly he is right. Instead of celebrating the living flesh-and-blood being who fought her way into my life against all the odds, I was mourning the perfect imaginary daughter I had lost.

The heat of shame steals through me. How can one grieve for a child who has never existed anywhere but in my head? How will I ever I lay this wraith to rest?

  1. A stormy November night. Darkness is total, whipped into place by the fury of wind and rain lashing at the kitchen window. I don’t want to go outside, but Conor is strangely agitated, and insists we ask our neighbour to mind the kids for half an hour. He says nothing in the car, as we drive along the seafront into Skerries, the white caps of waves on the left disembodied by the dark, floating like ghosts. My heart, normally so unobtrusive, is beating hard and fast, my fears surge, wave upon wave. My fears are manifold—that by doing nothing but existing our strange little daughter is controlling our lives, our family, Conor’s ability to do his work, my libido; that I am depressed; that I am pushing him away; that I am losing him; that he has found someone else; that I might have to raise Carys and my boys on my own, that I might suddenly be all they’ve got—but Conor himself has never been one of those fears. Tonight, however, his uncharacteristic behaviour makes me uneasy.

The truth is, I barely know him anymore; he buries himself in his business, I fade into the persona of Carys’s carer, and these coping strategies alienate us. We don’t talk. We don’t go on dates. We don’t have sex and we don’t talk about not having sex. Most nights, I sit alone in the top of the house with a book and he sits downstairs until late, glued to the tv. He wants to be intimate, and so do I. But I just can’t, because deep, numbing exhaustion has stolen from my body into my thoughts and emotions, has turned me into something scarcely human. And so we retreat further from each other. The need to talk this disconnect through feels urgent, but how do I articulate something I don’t understand? Instead, we dance around the issue, pretend it’s not lying between us in our bed at night, as I face the window and he faces the wall, our backs almost but not quite touching. Somehow, we are surviving, managing day by day to shape some semblance of happy family life for our boys and Carys. We both instinctively know how much we each need the other, how we couldn’t do this alone. A need like that doesn’t require words. Does it?

Conor parks the car on the deserted harbour front and we walk. His arm is wrapped tightly around me, protecting me from the storm’s clutches. Or sealing off escape. Everything around me feels stingingly alive, and there is a frisson of excitement rippling through my blood. For too long, life has shrunk to the size of getting through each day with Carys, surviving each new disaster the doctors uncover, like going to the dermatologist for a routine examination of the haemangioma which has grown so big it hangs over her left eye, only to be sent to an ophthalmologist who says emergency surgery is required or she will go blind; like going into surgery and discovering she has a new heart condition no one knew about; like going to a heart check-up, and the cardiologist looks at the movement of her legs and says, ‘Has she ever been seen for her hips? I’m just going to make a referral…’

There are too many moments when my muddled logic betrays me, and I dissolve. Like when Conor rings me at the end of a long day and says he has a meeting first thing in Galway, so he’s going to drive straight over there from work and stay over. I know his work takes him all over Ireland, that he must stay away overnight often, but it is the suddenness of this which catches my breath, and my warped thinking concludes he is with a woman. I barely sleep, and when the grey light of dawn steals between the drape of my curtains, I give up the pretence, and get up. Over coffee, the stillness of early morning creeps into my turbulent mind, bringing calm and reason to my disordered thoughts.

But now this storm has stirred something dormant in me. Conor pulls me up onto the old bandstand and turns me to face him. His arms are around me, his chin on my shoulder, his mouth beside my ear. I melt against him because this feels like it always used to. He is speaking. The wind rips much of it from his lips, but I hear enough: what has happened to us… we have to fix this… I love you… let’s get married.

It is a surreal, pivotal moment, a suspension of time in which I confront myself. I had been married before. It hadn’t worked. Never ask me to marry you, I’d told Conor when we both realised that our relationship was more than just fun. And he never had, not through the transplanting of our lives from London to Ireland, the making of a home, the births of three children. So why now? What does this mean? A bit of paper and some legal language is not going to solve this. And then it comes to me: Conor has fears, too. He thinks he is losing me, and that matters to him. In my heart, I know that the other woman I have conjured for him is everything that I am not, the parts of me I have lost, like desire, spontaneity, fun. Whatever I think I am or am not, I am enough; he still wants me. We are like the apple tree and the yew which grew from the graves of Bailiu and Aillinn; we cling together and make each other strong.

So I say yes.

KISS

June 2019. On a Greek island, in the early morning sun, Conor and I are sitting at a roadside taverna, Carys sandwiched between us, queen presiding from the head of the table. She is watching Peppa Pig on her DVD player and guzzling freshly squeezed orange juice; we are slowly coming to with small cups of strong coffee. An old Greek man approaches, puts his hand on Carys’s curls, and says to us, ‘Beautiful, beautiful.’

Then he cups her face in his hands and kisses her on both cheeks. Carys is so taken by surprise she hardly reacts. Conor and I are astonished.

The man has few English words. He points to himself and says, ‘Cousin,’ then points at Carys. ‘Fifty,’ he says, then points at the sky. Then, ‘God,’ a shrug, arms thrown up in the air, and a sad shake of his head. But his eyes light up when he looks at Carys again, and he smiles. Half-way around the world, a stranger sees Carys and sees beauty, and he is not afraid to show it. After that he comes every morning to see Carys.

And then, sitting in a taxi, heading back to the airport, chatting to the driver. After a time, his eyes meet mine in the rear-view mirror, and he says, ‘You know what is the message of your family?’

I stumble here; something has changed. This has moved away from the realms of light-hearted chat, and I don’t know how to respond.

Seeing my confusion, he provides a gentle answer. ‘It is love. Love for each other, and respect.’

This is the island which birthed the Goddess of Love. I should have known this journey would be special.

And then a few weeks later, early August, sitting in the café at the Loughcrew Megalithic Centre with my friend from Galway, Carys on my knee. Despite the grey sky and sting of rain it is warm, and there is a relaxed, holiday vibe in the air; walkers in shorts and boots come and go, en-route to and from the cairns crowning the hill. Carys is all eyes; she has never been here before, and she watches the waitress who has brought her a big slab of chocolate cake with great interest. I only notice the three men who come in for lunch because one of them comes up to Carys and says to her, ‘Hello beautiful, and who do we have here?’

Bemused, I supply her name. His friends pay us no attention, settling down at their table, chatting amongst themselves. My skin tingles. I can feel time slipping, slowing. Something is about to happen, and everything feels different. The man is tall; he has grey hair and a kind face, and there is something about him that I can’t place, a stillness, maybe, like a rock in a river that water flows smoothly around. But he is not looking at me or my friend, only Carys. He takes her face in his hands and places a kiss on the top of her head, then smiles at her and returns to his friends. And Carys, with her multiple sensitivities around her head, accepts his touch, his kiss, with calm indifference, like a queen accepting the attentions of an adoring crowd.

It is a glittering moment, both beautiful and strange, and it remains with me long after the day has passed. It is a lesson to me that words can be powerful, but they will never have the atomic impact of a simple demonstration of love. Demonstrations like that can change lives, alter the course of history.

VOO VOO VOO

Carys loves herself. I know this because in her room there is a mirror, and Carys will crawl up to it and spend ages gazing and cooing at herself. She is not concerned with the huge scar left behind on her forehead by her retreating haemangioma; she doesn’t even give it a glance. She stares into her own eyes, at her curls, twists her head this way and that so she can stare at it from all angles, opens her mouth wide, examines her tongue and her teeth, pulls funny faces and laughs at herself. She kisses herself in the mirror, leaving a cloud of dribble on its surface. She never looks at her clothes; along with the scar, they are not who she is, and she appears to know this. Carys has a particular tone of voice when she’s talking to herself in her mirror; it is soft, muted, gentle. We all recognise it, and know what it means. When I approach her, she smiles at me in the mirror, and then turns to me with a hug. She knows that the mama she sees in the mirror is not her real mama but a reflection, that the girl she’s talking to and smiling at is a replica of herself, just like the photos and videos I show her on my phone. She adores watching videos of herself, chats back in response to the sounds she hears herself make. Perhaps it is the only way she manages to have a sensible conversation with anyone. Carys loves herself, but without conceit, consciously and unconsciously. Despite her imperfections, she is comfortable in her skin. I wish I could be more like that.