“Jamie came first, reluctantly thrust into the world three weeks before he was ready. My glorious, flame-haired, fiery-natured first-born son. He lay on my belly, still covered in the mucous of birth, looking at me, his dark unfocussed eyes swivelling. Overwhelmed by the full force of a mother’s love, I stared back, bemused by this tiny human scrap of life. Just a few ounces and a few days the right side of being premature, his body was so small, it fitted perfectly into his father’s cupped hands.
Two years later, Tom joined us, five days late and so keen to make up for lost time, he was almost born at a toll booth on the motorway. He arrived with a frown on his face. We wondered at it, but didn’t understand what it meant. We soon learned. He lay in his incubator, a giant amongst his peers, a tangle of wires snaking from his body to a bank of computers and monitors. Tenaciously he clung to life, and we all clung to each other. His first year was touch and go, but he made it. My beautiful second-born, Tom the comedian, the musician, the stuntman, always with the glass of life half full.
Still, someone was missing. We both felt it, Finnlay and I. So along came Carys. A longed for daughter and sister. Our family was complete.
Our sons had done their jobs well. They had prepared us for what was to come. We didn’t know it at the time, but we were ready.”
She is one of less than an estimated three hundred unique individuals worldwide born with Cardofaciocutaneous Syndrome. Special indeed.
Drawing on my own experiences, Unique is a fictionalised story of a family’s struggles, as they try to cope with the arrival of such a child into their lives.
It turns them upside down, makes them question all their beliefs and previously conceived values. Yet as much as she is the catalyst which almost destroys them, Carys is also the hub around which they revolve, the glue which holds them all together.
The journey along life’s highway is not an easy one with a special needs child in tow. But it can be done. It will be arduous, full of challenges, victories and defeats. There will be joy, sorrow and fear.
But most of all, there will be love.
Life will never be the same. It just might be better.
Unique, a novel by Ali Isaac, is due for release in the summer of 2013.