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/sebastianjosephlloyd
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