London - There can’t be a parent who read the moving story of Adam Lewis without wondering: “What would I have done?”
Twelve-year-old Adam died of cancer in May, and his family have now revealed their decision not to tell him that his cancer was terminal, so he could enjoy his last year of life.
We can only imagine what that cost them all - and bow our heads with compassion and respect.
This touching story raises no issues of right or wrong. Some people might think it better always to be honest with children; others will feel instinctively that Adam’s father Kevin and mother Kim did the best thing in keeping the terrible knowledge from their boy.
None of us can possibly know exactly how we’d respond if required to make such a decision - we just pray we’re never put to the test.
One thing is sure. This individual case is yet another testimony to the enormous, self-sacrificing power of parental love.
It also makes me reflect that most of us will always try to protect those we love, and that perhaps we can do so because - deep down - we never really give up hope.
My daughter was born with a congenital disease, a malfunction of the bowel called Hirschprung’s disease, a club foot (talipes) and a spinal defect that was a mild form of spina bifida, so I spent much time (too much) between 1980 and 2000 in and out of children’s hospitals.
Over those years I met many parents whose selfless courage made me humble.
In all honesty, I’ll add that there were also others who would turn their child’s illness into a drama with them, the parents, at the centre. You know - rolling eyes to heaven and asking, self-pityingly: “Why is this happening to me?”
But they were the minority. Again and again - in Great Ormond Street, Bristol Children’s Hospital and Lewisham Hospital - I met selfless mothers and fathers who faced up to the very worst thing a parent can contemplate, with extraordinary strength and courage.
Reading about Adam, I remember them: a the bright, encouraging smile would be fixed on their faces as they sat by their children’s beds, but a devastating bleakness would cloud their eyes when you talked to them alone.
At 12, Adam Lewis knew he had a brain tumour and endured all the necessary treatment to keep it at bay for as long as possible. At the very end his family said goodbye, and he gave up the fight.
The point is that along the way he was able to enjoy some wonderful experiences (with the help of the Bluebell Hospice in Sheffield) because his parents allowed him to believe that he would get better.
If they had told him there was no hope, he might have spiralled down into depression.
How could he have faced his grim treatment if he had thought it useless? They knew it would buy him just a little more time.
What must it have been like to watch your beloved son having fun meeting a speedway team knowing that, in effect, you were telling him lies?
The agony of his parents, brother and sister can easily be imagined. Yet they put on that bright, brave face I remember seeing again and again in hospitals - controlling their own feelings of sadness and despair to keep him afloat.
Those who had given him life in the first place were determined to hide the inevitability of death - and, therefore, they were giving him a little gift of life again.
I’ve heard people ask whether children truly understand about death. When, aged 14, my daughter Kitty was a patient in Bristol Children’s Hospital, she became good friends with a younger girl who had cystic fibrosis. Chrissie was a beautiful blonde sprite who loved horses, pop music, clothes - just like any teenager.
At the time, another teenager on their ward was dying of cancer and one day Kitty (who didn’t really understand Chrissie’s condition) remarked to her friend that at least they were luckier because they were going to get better.
Chrissie told her the truth: “I’m not,” she said. Looking back now, I marvel at the way that lovely girl seized every scrap of enjoyment from the time she had.
She was 20 when she died, and my daughter and I went to her funeral. Of course, the tears flowed, but the wake - in a Bristol pub - was full of a strange joy, too. Her mother had every right to be intensely proud of a precious young life, so well lived.
There are no rules for how to confront death, whether your own or that of a loved one. Some adults want to know; others prefer the doctor to keep his counsel.
Some will think that there is no point dwelling on the inevitable; others will want to make their peace and say goodbye in full knowledge that the end is nigh.
When a young person faces death, most people will cry out at the colossal unfairness - and yet the awful truth is that there is no allotted span for any of us.
Sometimes a family will keep the truth about their fear secret to protect each other. Believe me, I know about such a loving conspiracy. When my daughter was 16, after months of pain, she faced yet another serious operation - and yet her father and I had been told four years earlier that any more abdominal surgery would be life-threatening.
For weeks before the operation I sensed a terrifying, black cloud hanging over our family. I could almost see it following my car as I drove. No escape.
While the larger part of me clung to trust in her surgeon, the rest of me felt convinced Kitty would die. Yet did I discuss this with her? Of course not. I could not expose her to my misery.
But the morning after her long and complicated operation, she opened her eyes in Intensive Care and whispered: “I didn’t die, Mom - and I’m going to get better.” It was then I realised that, of course, she’d been looking at that ominous black cloud, too. But she had chosen bravely to hide her own worst fear in order to save me from it.
She and I (who never stopped talking) had each kept silent, for the sake of the other.
I wonder if the superhuman effort of letting their son Adam go on hoping he’d recover enabled his parents to themselves feel strengthened in turn?
People will pray for miracles in the midst of disaster and will hope against hope even when all hope should have gone.
You will tell yourself that things will be all right, even when you suspect it’s a lie - and sometimes the miraculous power of the hope itself can lift your spirits, against all reason.
And perhaps - who knows? - 12-year-old Adam Lewis did know the truth, all along.
In my experience, sick children can develop a deep, unknowable wisdom, far beyond their years.
Truly, it wouldn’t surprise me if he clung to laughter - and to life - as his own gift to the parents he loved, savouring every moment with his family for their sakes, as well as for his own.
It doesn’t really matter, does it? In this one small story we are all given a gift - yet another example of what Dante called: “The love that moves the sun and all the stars.” - Daily Mail