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My little son died in my arms, but I know i'll see him again

After his five-year-old son Craig died of a brain tumour, NevilleSexton’s world fell apart. This is his story

On a warm and pleasant Sunday evening on June 25, 2006, my partner, Barbara, and I decided to drive up from our home in Gorey to Tallaght Hospital.

We wanted to bring our fiveyear- old son Craig to get checked out in A&E. In the days previously, he'd begun to walk and watch TV with his head slightly tilted to one side. But on that Sunday evening he'd become quite upset after getting stuck in a simple playground apparatus. It was clear something was not right. In less than 24 hours after making that journey, our lives were turned upside down. And we were set upon a journey that ended, some four months later, with us holding our dying son in our arms as he slipped away from this world.

Craig had been diagnosed with an inoperable terminal brain tumour and had been given only seven to nine months to live.

“Seven to nine months” — these words belong in stories or TV dramas — places where you can turn the page, switch the channel.

In life, real life, there is no comeback though; no page to close, no other channel. The most vulnerable part of you is left exposed and doomed to a gruesome and unthinkable but certain fate and you are powerless against it. Crying is just about all you can do.

I remember one evening while putting Craig to bed and going through our ritual of prayers how he quietly said something that left me horrified.

We had actually finished all our prayers and our messing around and were talking about his soldiers. I used to tell Craig to imagine, as often as he could, that he had thousands of soldiers inside in his body who were slowly but surely killing off the lump in his head, making it smaller and smaller. This night, as we began to discuss them, Craig sighed forcefully.

He looked fed-up — bored of talking about the bloody soldiers and I couldn't blame him. But it was more than just being bored or fed-up. He looked away from me, to the wall behind, and said “I'm dying, amn't I?” I was stunned but couldn't allow a pause.

“Of course you're not, darlin',” I replied instantly. “What makes you say that?” Several thoughts raced through my mind.

What do I say to him? How do I make his fear go away? “I am. I know I am,” he continued, and then a stream of tears came. I reached in and hugged him close, then stared straight into his eyes. “Look at me, Craig. You're not dying, do you hear me!” It was the truth as far as I was concerned. I didn't believe he was going to die.

Craig was so remarkable I believed that he'd pull through it. I believed that he was the rare exception — that he would be the miracle case.

My stomach was sick knowing that his mind was perhaps understanding his situation, maybe giving up when there was so much — everything — to fight for. I wanted him to let go of those thoughts and embrace hope in being well again.

When I left the room that night, Craig was smiling at me. The darker thoughts were gone and he was, I hoped, in some way assured again. I walked into my back room, put my hands over my face and cried.

In the end Craig only got four months, leaving this world at 4.43pm on November 2, 2006. Having something so immense present in your life makes the absence of it unspeakably difficult to live with.

Craig was our only child — our reason for living — and with his passing the very nature of life and living collapsed in upon itself leaving us with only an intolerable, incomprehensible reality of total devastation. He was gone. . . and nothing made sense any more.

Grieving, coping, just breathing in a world that no longer makes sense is almost too impossible to take. But we took it. We watched our son fight all the way to the final beat of his heart. We held him, warm in our bed, as the pain in his face finally turned to peace.

Facing our first Christmas without Craig was a terrifying prospect. We decided to spend it alone in a log cabin in Glenmalure Valley. Christmas Eve proved to be very difficult for us. That evening I decided to go into our bedroom for a lie down.

When I lay down, I just started to cry. It was just then that I had the most incredible experience. It was a dream but not exactly a dream either because I knew I was half-awake but nonetheless Craig appeared in front of me smiling and simply staring at me. He then slid his hand over the back of mine and continued smiling his wonderful peaceful smile at me. It was crystal clear and real.

More signs that Craig lived on were to follow – flashing lights, pictures of Craig tipping over and bulbs smashing at significant times.

Two years after losing Craig, Barbara and I decided to write his story. We were ready to tell the world about a boy who shone his light into our lives, and whose life, though brief, was a masterclass in how it is to be done.

Craig The Boy Who Lives is a journey through a special boy’s life and on to the beyond. From the moment Craig answered our calls to show us a sign, we were gifted a certainty of eternal life and the promise of holding our boy once more.

On September 24, 2008, we were blessed with a beautiful baby boy — Dean. The beauty, the treasure and the salvation that is Dean filled our lives with such immeasurable joy. For all the joy that we felt in that moment, there was always going to be such sadness too.

Our thoughts turned to Craig and how happy he'd have been to see his little brother. Craig and Dean: two brothers who never met, who never would meet in his life and who were both robbed of a life of close brotherhood.

But we also knew that Craig would always be part of our family here. In writing this book it is also my hope that in years to come, Dean can pick it up and read about the brother he never knew.

Craig: The Boy Who Lives is published by Gill & Macmillan, €14.99