It’s coming to the end of our year of firsts. The first of everything without Levi. Our first car ride, first trip away. First day of school, first Easter, first Father’s Day. We’re yet to experience our first birthday and Christmas, but they’re coming, and soon.
At the edge of this raw, painful rotation comes New Year’s Eve, the first anniversary of Levi’s death. We will awake the next day to a new year, and a new revolution. Only this time it’s a year of seconds. And so the cycle continues, in perpetuity.
In those first few months after Levi died, I thought I had touched the length and breadth of emotions available to me. Initially my grief surprised me, unfamiliar with its cunning twists and turns. It wrapped me in a transcendent bubble, padding me against the shockwaves of his death and the major and minor tremors that followed. I felt powerful, purposeful, as though his spirit propelled me forward.
Not long after his funeral, we went away together, alone for the first time as a family. A different family. It was an eerie, unfathomable sense of loss. Yet as I roamed the deserted beaches not far from my childhood home, I was still protected. I can do this, I thought.
When we returned home, I found myself in Levi’s room, needing to nest. I unpacked his backpack and buried my face in his clothes. Read the love letters he’d written to us and stashed under his bed. Traced the perfect lines of his artwork he’d brought home from school.
These visceral acts earthed me, brought every inch of my pain to the surface. The sadness was suffocating, and it lingered for days. When I caught my breath, I could no longer walk unscathed. I knew I had a baseline for my sorrow, and it terrified me.
Then I arrived at my first Mother’s Day without Levi, and I entered new territory. A few days before, a friend found me at Levi’s grave, laying on top of the patchy grass that was still growing back after his burial. The urge to dig that had so powerfully gripped me in those early moments had passed. But that day as I lay face down on his plot, the leaves and twigs scratching my face, nothing was enough.
I could find no solace there or anywhere. I wanted to rip through the layers of dirt to his coffin because the thing I was looking for lay right beneath me. Yet the distance between us was complete.
Fast-forward a few months and we’re staring down another gauntlet. The months of November and December have always been a time of celebration for our family. All five of us have our birthdays within a six-week period, bolstered by the school holidays and Christmas. Yet this period is now so fraught with minefields, I’ve started to call it the Danger Zone.
Two Christmases ago, Levi was first diagnosed. He had brain surgery on my birthday. Last Christmas Day, he was actively dying. He didn’t speak the words out loud at that moment, but he was hanging on by a thread at that stage, and Christmas Day to him was both an oasis and an endpoint. He just needed to hold on for that little while longer, and then he could let go.
A few days out, the mountain seemed too big to climb, so I made him a Countdown to Christmas and stuck it to the bookshelf in our lounge room. He made it to Christmas morning. Unwrapped his presents, then surrendered. We went to Bear Cottage later that day. His countdown still sits in the same place today, a reminder of a little boy and his big dreams. It’s a paean to courage and a clarion call to carry on. A nudge to what we’re all capable of.
As we approach Christmas this year, Levi, and his absence, is everywhere I turn. He’s missing from the school events that clog our end-of-year calendar. Absent from the Santa photos in shopping malls that underscore our incomplete family. His scribbles are gone from the Christmas catalogues that clutter our mailbox, circling the gifts he wanted in his stocking. There are tinsel and reindeer and twinkling lights in supermarket aisles, all without his squeal of approval.
I was thinking recently about the fragility that sometimes comes after the events that commemorate Levi. The groundswell of support, then the hollow reality of our loss. On a high from one such occasion, I told a friend I was bracing for the crash. She would know, having also lost a child to cancer. Similar to surveying the hazards that are scattered towards the end of our year of firsts, I was trying to do what I always do – prepare for the worst. As if canvassing every emotion could somehow protect me from what lay ahead.
My friend surprised me when she said my effort was wasted. The fall may never come. As someone who’s stayed the course, she knew, as I am only beginning to understand, that our sadness and sorrow are there regardless, ebbing and flowing with intensity. I can control my feelings no more than I could control the trajectory of his illness. These events are significant, but each and every day is hard. The worst has come, but the onslaught doesn’t stop. It settles in and seeps like a dull ache in your bones.
When Levi was going through treatment, I remember telling my psychologist that I was scared of how I would feel after Levi died. Of the person I would become. How people would relate to me when I had fundamentally changed. How could I find my place in the world when everything I knew had so irrevocably shifted, and what I loved had been destroyed?
Now I am on the other side, I know I have changed. I have a complex interior life and daily challenges that only those who’ve trod the path can understand. But I have survived, and in some ways thrived. If he could move that mountain, maybe I can weather these peaks and valleys, and yield, just a little, to these cunning twists and turns.
Levi’s Project is working hard to find a treatment for DIPG so other families can have a different outcome. Donate to this world-leading research here.