I’ve had more time these past few weeks to turn inward, unencumbered by catch-ups, play dates, sporting commitments and school events. Our days at home mirror something of this time two years ago, when Levi had DIPG. Life back then was far from normal, as it is now, and our world became small, as it has now.
We are again spending afternoons together in the backyard or at the park. Throwing a frisbee, jumping on the trampoline, kicking a ball. Fighting. Some things are starkly different, but the self-sufficiency is the same. It’s just the four of us now, but, as always, our fifth family member looms large.
Free of our usual distractions, we miss Levi acutely. We imagine how we would fill our days if he were alive. To try and get closer to him, we watch his favourite shows, read his favourite books. Sometimes there is conjecture… How old was he when he first learnt to do a backflip? We can’t ask him because he’s not here. An eternal question hanging in the air.
The slowness of pace has me circling my grief and observing its evolution. A few months after Levi died, we went to a bereavement camp. It was a relief for Olivia and Archie to be surrounded by kids who also wore the invisible scars of trauma and pain, but the encounter was disconcerting.
Here was a window into the altered lives of people dealing with the death of their child, and the enormous strain it places on family life. Of course, we were among them now, but we felt somewhat removed. We had been encouraged to seek out families who lived a similar experience, but we had all we needed from friends and family at that stage.
One mum spoke about how things seemed to get harder as time went on. Not yet three months following the death of my own child, and still suspended somewhere between astonished disbelief and crushing realisation, I wondered how this could be. Looking back, as horrific as that time was, those days seem simpler now. Survival was the order of things, and what we were feeling was accepted and expected.
It stayed with me, that glimpse through the trees of the road ahead. Now, 18 months into my own bereavement, the same time as that mum at camp, her words resonate. Things are complex. Harder? In many ways, yes. As other people’s connection to Levi gets further away, and his life becomes less intrinsic to theirs, he is still inextricably part of ours. The timeline of grief expires for some, and we deal with our own pain, as well as the approval of others to continue to grieve.
I once heard Rosie Batty, the most eloquent of survivors, talk about how her relationships became difficult after the death of her son Luke. Levi was merely sick at that stage. As heavy as that period was, he was still around to have and to hold. Again I wondered how you arrived at that place, where you were dealing with the loss of your child, as well as the unravelling of relationships around you. A multitude of deaths.
This was another whisper of what could become, and it made me recoil. Connection to those close to me is what I crave above all else, to silence the alienation that stems from having thoughts and memories and experiences that no one else around me does. Those attachments are what tether me to their world, as far away as that can sometimes seem.
My wise counsel, Vera, talks about the different realm you inhabit after the death of your child. You arrive at a new place, with unfamiliar inhabitants, a strange language, a different way of life. Yet you must learn to communicate and conjoin with all that you left behind. You become bilingual, but a sense of otherness lingers. It’s hard to shake the feeling of being displaced.
If you’re fortunate, as I am, you find people who help you straddle both worlds and close the gap of disconnect that can dent your relationships. I’ve now expanded my orbit to those who have been through something similar, and it does help to feel less alone. The push and pull of my interactions – the desire to be both embraced by my fold and to flee – is a way to protect myself against the enormity of my experience. Just like the ebb and flow of my grief, I dip in and out as I need to.
Through this lens, the insularity of the holidays was the retreat that I needed, a shelter from the storm. As our hibernation comes to an end and a whiff of normality returns to our lives, the sparks of distraction start to fly. There’s no judgement toward the withdrawal; no longing for the approach. It’s all part of my brave new world, as messy and marvellous as that can be.