In September, some friends in the village tragically lost their baby to leukemia. Sebastian was 39 weeks when he died, his curtailed life shorter than his gestation.
Instinct and received wisdom tell us to lose a child is the worst bereavement a person can suffer. To watch life ebb from our own precious creation, a life we assumed would endure beyond our own demise, is a cruel disruption to natural order. To the uninitiated, it seems incomprehensible that such a loss would not result in the total collapse of our world around us.
'I can't imagine what they're going through,' said a downcast mother in the playground at school pick-up, soon after Sebastian had died. Which is exactly all we could do - imagine - for if we are lucky enough not to know the pain ourselves, imagining is the only route we have to empathy. Translating that imagined scenario into the right kind of empathy is the difficult part. How do we find the words and actions to console, not to offend, not to allow the loss to become the elephant in the room? How also do we keep from dwelling on the tragedy, but instead allow the bereaved the freedom of laughter, of normality, without awkwardness? In the West, where infant death is mercifully uncommon, we have few points of reference.
In our village, we have been lucky. Friends and acquaintances have been led by the bereaved themselves. What seems incredible - brave, inspirational, counter-intuitive - is that we see the everyday of family life with two remaining young children continue, without drama, in a very routine way. The strength and dignity with which this grieving family has fortified their unit is immense.
While everyone on the peripheries wants to help, we don't necessarily agree on 'the right thing' to do. An 'In Sympathy' card didn't feel quite right to me. But was an email too impersonal? Flowers seemed inappropriate, because I think of them as a mark of celebration or a ray of sunshine on a gloomy day. How could pretty blooms go the distance here? How about chocolates, bottle of wine, or a cake? Perhaps there would be scope for basic gratification amid grief, if it was served-up? I opt for the cake. My mistake was trying a new recipe, using a glut of early-autumn courgettes. The sodden chocolate and courgette brick I created was unfortunately not good enough to share. My husband cut a wet slice of the finished product and pulled a face. 'I'll eat it,' he says helpfully, 'But I wouldn't give it to anyone else.' Perhaps it's a sign, I think doubtfully, that the cake wasn't the right offering, and good intentions turn to dust.
The next day, I learn a valuable lesson from our younger daughter, age nearly four. When I tell her over lunch about Sebastian's death, I am touched by both the maturity and simplicity of her response. We visited Sebastian at Great Ormond Street while he was being treated, so she understood that he wasn't very well.
'He has died?' she says with surprise, 'But he was a baby! He hasn't even spended his life being a children yet!'
After choking on a sob, I take a breath to explain not everyone lives long enough to grow up. 'When you're dead,' she continues, testing her limited knowledge, 'You can't come alive again. He will never be able to play with his toys again, or go in his pram, or even be holded by his mummy.' As she declares each denied rite of passage, my throat tightens a little more. With a sigh, she slumps her head into her little hands, elbows on the table, and looks reflective for a few quiet moments. Then she says, 'I still feel quite sad about baby Sebastian, that he has died. Maybe some pudding would make me feel better?'
As I agree with a smile, my mind turns to the chocolate courgette cake. How childishly simple my instinct was.
This weekend, the village church was packed as family and friends came together to remember Sebastian's short life in a memorial service. To listen to the family's words was humbling - the eulogy and the genuinely personal, grateful thank-yous. The sadness was immense, the hurt tangible. Yet laughter was invited; this was the sadness of admirable survivors.
It is so easy to be paralysed by uncertainty, whatever the circumstances. By doing nothing we may avoid doing the wrong thing, but for certain is that we can never do the right thing either. Sebastian's parents have been so generous in their gratitude to everyone. While we may feel we've done so little, not enough, perhaps by offering a drop of comfort, we can collectively create a sea of support.
I have learned much from Sebastian's death; one thing is the ambitious point of reference it has given me for coping in adversity.
Sebastian's parents have been through an experience worse than most of us will ever know, but something they have never inspired is pity; their dignity is far too great for that.
Sebastian's family are fundraising for research into blood cancers in children at Great Ormond Street Hospital. To help give hope to other families, please donate to Sebby's Brighter Future Fund https://www.justgiving.com/sebastianjosephlloydSuggest a correction