I got long-listed for the third and final time by Fish… I’m not doing it again. Here is my story.
They say that the fairy folk, the Sidhe, are wont to steal a human child, should they wish it, and replace it with one of their own. I wouldn’t put it past them. When my daughter looks at me with those mesmerizing eyes, so very pale blue and clear as water, I know that she is staring right through me into the shady realm of her origin, a world beyond my comprehension. Her eyes are like a mirror; they reveal little, only reflecting back at me someone who, at times, I would rather not see.
She cannot be explained by the rationale of science and medicine. She is locked in a world without language, without movement, and I know that what goes on behind those eyes is as alien to me as my reasoning is to her. And yet we have learned to accept and love each other, to want and need each other, with an intensity which goes beyond explanation, a mother-child bond which simply is.
That first night, I barely slept. My new, tiny daughter lay in her crib, snuffling and snoring in her sleep. A beam of moonlight slid between the curtains and lit up Conor’s face where he lay as if unconscious beside me. He looked relaxed, the lines of daytime concerns eased smooth by the peace of slumber. Carys’s mop of black curls was a dark shadow against her crib’s pale bedding.
How is it that one’s worries are always magnified out of control during the wakeful watches of night? It’s as if that dark wing sweeps aside our powers of logic and reason along with our perception of the physical world around us. Only daylight can restore our sense of perspective, and banish our worries back to whence they came.
As I lay in my bed, giving way to my panic, the silhouette of my familiar wardrobe manifested itself as the monster of Carys’s syndrome; the bulk of the chest of drawers became her swollen, weak heart, the curtains my ignorance. They advanced upon me, wielding their weapons of fear and destruction, but I held my shield steady. I knew that without a weapon, I could never destroy them, but my shield of love could hold them at bay as long as I stayed strong enough to lift it.
I eased myself gently from beneath the quilt, trying not to disturb Conor, and pushed the curtain aside a little, so that the moonlight drifted across my sleeping baby. Bleached of colour by the night, and silvered by the moon, it was no human child which lay there, but some fragile, magical, ethereal being, a mystery just waiting to be unravelled. For some unknown reason, she had found her way to me.
I rested my hand on her, feeling her warmth travel through me. I brushed my hand gently over her tight curls, marvelling at her tiny upturned nose, her full rosy lips, her pointed elfin chin. In her dreams, she was feeding; her little mouth began to make suckling movements.
I sat on the windowsill, drew up my legs and huddled into my robe. Beyond the glass, the familiar vista had taken on an eerie aspect in the darkness, as if I only half recognised it. I had always loved the panorama which only ever unveiled itself to me from here. I had always felt welcomed, protected by it, that I belonged and had my own place in it. But not now.
The uneven paving and the black river of tarmac slid between shadow and the golden glow of a street light. I wished its warm, strident glare would fade, so I could see the stars; I knew they were out there, glittering like a myriad eyes, watching my struggles with cool disinterest. My problems were, after all, of little consequence in the turn of time and the vastness of space.
The humped shoulders of distant hills shrugged indifferently against the dark horizon; they had stood there for aeons, as the tides of man rose and fell with each new dynasty and civilisation.
In that moment, I understood the illusion. It wasn’t the outside that had changed; it was me. The danger I sensed hid not in the shadows and contours of the brooding landscape, not matter how threateningly the night painted them, but in my own frailty and inertia.
I glanced back at my daughter. She was the cause of this inner cataclysm. She was the root of my anguish. She filled the void, yet she had created it too. She slept deeply, innocently. Black curls, silver skin, soft breath. My fairy child, who should have died before she was born. She had fought her battle and won; she had cheated death, and God, the Gods, or whoever was out there, they weren’t happy about it. So they made us pay.
And so, just as they always did when I fell through the cracks between sleeping and waking, my eyes turned inwards, tracing the journey of the past few months which had brought me here; the joy as new life swelled within me; the mind-numbing and bone-chilling ache when the first scan revealed anomalies, and joy took wings and abandoned me; the fear when doctors claimed she would not survive gestation; the apathy of carrying within me a child afflicted by some nameless genetic deviance, and being unable to do anything about it, but wait. Yet whilst the experts urged us to accept the inevitable and discuss funerals, I could feel something else growing alongside this new, tragic little person.
It was hope.
I don’t know where it came from. Not from religion, for wasn’t this proof that a higher consciousness did not exist? My hope felt strong, and in my mind’s eye, I could see it; a shining thread of light, powerful, yet so delicate it could easily be broken by a breath, or a careless word. It wound its way through every fibre of my being, from the tips of my toes to the ends of my hair. And whilst I could not at that point put conscious expression to it, it was to prove a constant and comforting companion. As time went by and Carys stayed with us, my slender ray of light became a magnificent dancing cord of raw energy throwing bright lassoes around every straw I dared to clutch at.
Each morning was a treasured gift, as I awoke and realised that my baby was still alive within me. My body, wrapped around this child, was being granted another day of precious embrace. I desperately wanted her to be born alive so I could hold her, look into her eyes, and tell her how much we loved her. Just five minutes of life, that was all I dared ask for. If she passed away in our arms, at least we would have told her. She would know.
When she came, albeit reluctantly, she was born three weeks early to a team of waiting attendants. They whisked her away from me before I had time to note more than the thick dark curls, and tightly shut eyes. As if by keeping them shut, she could delay the inevitable.
The next day, I was discharged from the hospital, but Carys was not. Going home with empty arms after giving birth is something no mother should ever have to experience. I was ushered through the door to the sofa, a cup of tea placed in hands which didn’t seem to know what to do with it. My two toddler sons whirled around the room unaffected, their exuberant play breaking over me like the ocean parting around a rock. Like that rock, I was unmoved. The tea went cold in my hands having never been raised to my lips. Without speaking, I drifted upstairs like a wraith and lay on my bed. Sleep did not come. But I belonged more there in the silence, with Carys’s new crib beside me, than I did in the happiness of the living room. I stared at the crib. It was as empty as I was.
Friends came and went. I accepted murmurs of commiseration and utterances of hope, wordless hugs, gifts of toys for Carys, and casseroles and lasagna for the family, so I wouldn’t have to worry about cooking. I let my sons be taken away from me for sleepovers, so I could have ‘time’. Time for what? They left nothing for me to do, but sit and contemplate.
Carys slept for three weeks. On the day she should have been born, she opened her eyes for the first time. The shock that jolted through me as I gazed into them was a turbulent mix of joy, anxiety, and mutual recognition. When I held this strange little being to my breast, it was with the uncomfortable feeling that it was not a baby I was nursing, but a long-lived soul.
We continued the process, Carys and I. We both understood our roles, and played them well. Feeding was a success. A week later, I was allowed to bring her home. The intimacy forced upon new mother and child eased into familiarity. It was loving, and beautiful, but it was overshadowed by the nameless beast which possessed her. And it brought companions.
Whilst the doctors did their tests in order to establish its identity, I replicated their efforts by searching the web, stumbling all the while over its treacherous accomplices; the most hazardous of the bunch, a heart condition known as Hypertrophic Cardiomyopathy.
This would be her stalker, prowling along behind her for all of her life. A dangerous killer lurking in the shadows, awaiting its opportunity to pounce should we slip with the medication which held it at bay. We would never shake ourselves free of its clutches. We could never hope to save her from it, but there was no way we were going to let it have her.
Less shy was the attention-seeking Haemangioma, or birthmark, which flaunted itself wantonly, drawing much unwelcome notice from the general public due to its size and ugliness. Its unsightliness, however, paled into insignificance compared to the ugliness of people’s reactions to it. It had first made its debut two days after Carys was born, a shy blushing creature, seemingly innocent and of no consequence. But once it had established its claim, it grew with a speed and malicious enthusiasm which astounded me. Day by day it expanded, turning a deep, shiny red colour, a sinister parasite claiming its territory on my daughter’s face. The surface wrinkled and puckered, forming little hills and valleys, a menacing roseate island in the soft smooth sea of Carys’s forehead. When it began to drape itself over her left eye, surgery was decided upon in order to save her sight. Save it they did, but the monster never completely let go.
Epilepsy completed the deadly trio, although lesser culprits waited in the wings to join them. The seizures pounced on my daughter day and night, relentlessly jerking her body in their cruel, hard grip. Watching as she shook and twisted like a rag doll under their control, there was nothing I could do but administer increasing amounts of drugs, and count the spasms. I lay by her side, holding her hand and crooning softly, hoping she knew I was there with her, and could take comfort from it.
And thus we settled into our strange new life, punctuated by weekly scheduled hospital appointments, and regular unplanned emergency visits. For a baby who appeared so robust, on the inside she was as fragile as a china doll.
Meanwhile, the mystery deepened. Various detectives came to us in the guise of doctors, but the diagnoses they offered bounced back and forth like ping-pong. Noonan’s Syndrome, suggested one of them, pointing out the long list of Carys’s defects. I turned over the leaflet he left us with. One small sheet of paper. The sum of our knowledge. The sad fact was, the doctors knew nothing about my daughter. This was uncharted territory. As her parent, I knew a fraction more, but unfortunately, a thousand times nothing still equals nothing.
Blood tests revealed something incredibly rare. Carys was born with Cardiofaciocutaneous Syndrome, quite a mouthful, but then, anything less just wouldn’t do it justice. We took the news stoically; wasn’t it always good to know the truth, no matter how much it hurt? Knowledge would surely give us the tools to work with doctors and therapists to create a plan of treatments and cures, set goals for the future.
But for a family with a unique child like Carys, there is little moving forward, only stumbling around in the dark, lurching from one medical disaster to the next, and hoping, praying, if that floats your boat, for a guiding light.
In those early days, I was so angry. I blamed everyone; the strangers, who treated us like freaks; the professionals, who treated us like an exhibit; the friends who treated us like we were made of china while they tried to hide their normal, perfect lives and normal, perfect children; even my family, who weren’t around when I needed them. I had never felt more alone.
For a while, I hated what the coming of this child meant to my life. Would I be changing nappies for the rest of my days, mashing food, listening to tantrums over causes I didn’t understand, singing nursery rhymes to an adult child who keeps patting her head for yet another performance of ‘twinkle twinkle little star’ ?
Would I ever climb a mountain again, hitch-hike across South America, stay out late drinking wine with friends, and not worry that I have to stay sober in case Carys goes into heart failure during the night and I have to get her to hospital?
And then I feel guilty for being so selfish.
This dark side of me is relentless still. It haunts me, never leaves me. My cruel, faithful shadow, waiting eagerly to enfold and absorb me when times are tough. I try to avoid it, but it seeks me out in unexpected places when my defences are lowered, and sometimes I fall into it and get lost. It feels like drowning, like sinking into murky depths no matter how hard I swim, the dappled sunlit surface fading from view far above.
The big black cloud we were learning to live under was spreading its gloom ever wider over our lives. Beneath it, the fairy child shone her light like a firefly caught in a storm. She became my teacher, revealing layers of existence I had previously been impervious to. When she smiled, it was with her whole being. When she reached out for me, she hugged with intensity. She loved fiercely. She didn’t judge anyone, no matter how cruelly she was judged in return. When she reached forward to pat a stranger’s cheek, it was because she had seen through to the goodness in his heart, and she responded to it. She alternated between bringing me deep joy, and terror. I understood that message; that in order to appreciate what is good, one has to experience what is bad. Being Carys’s mother was a never-ending lesson in what really mattered in life.
One day, the Sidhe will come and take their child back. The doctors will say her heart gave out, but I will know the truth. It is a moment I dread, but know I can’t avoid. Until then, Carys remains my fairy child with the silver-blue eyes, the silent voice, and the ever-living soul. The greatest gift ever given and received.
As dawn highlighted the horizon with delicate morning hues of apricot, pink and gold, Carys stirred and murmured in her sleep. Soon, the fiery orb of the sun would rise above the hills and begin its trek across the sky, defending my sanity and banishing my night terrors to the domain of darkness where they belonged. Bathed in its reassuring warmth and light, my courage would be replenished. Carys would wake, and the daily routine would begin anew.
Shivering, I went back to bed. Conor reached out an arm, half-awake, and pulled me in close, and in that warm, safe place I finally fell asleep.