If I had to sum up the prevailing sentiment of our first year without Levi, among the permeance of our pain and the lingering shock, it would be the crushing anxiety around how we would feel. This was on top of what we actually did feel. How would we feel going into birthdays, Christmases and holidays with such a cavernous hole in our hearts? The thought of living those days with Levi no longer in them seemed untenable.
All those previously joyous celebrations that propped up our yearly calendar, back when we were regular, earthly beings, had now become something we had to prepare for. In the end, those events, that now carried both a weight and an emptiness about them, usually came and went the same as any other day, with their sweetness and sting. It was the getting there that left us undone.
Now that we’re through that year of firsts, the anxiety has lifted. We know a little more of what to expect from ourselves and what is required of us by others. Loosened of the anticipatory grip on the unknown, we’ve become more comfortable with our limitations. There are things we simply cannot do. Coming to the end of our year of seconds, our biggest hurdle has been learning to live with our loss while the world, and everyone in it, moves on.
Levi’s presence in our lives is as large and luminous as our other children. He’s a whole being inside of us, full of colour and shape and stolen parts. Yet we get to let him out less. Share him less, talk of him less. So we tuck him away, where he stays. Just out of reach.
Some people who’ve had a sick child talk about life before and after cancer. There’s a point - usually diagnosis day – where their lives shifted, and it will never be the same again. That’s certainly true for me, but a different parameter now exists: before and after death.
I’ve been trying to define this lurking sense of otherness that simmers just below the surface for some time. It encircles me when the gulf between my world and someone else’s feels too big to bridge, or there’s chatter about small things. You have no idea, I sometimes want to say, but what I am really trying to get to is this: I have watched my child die.
Levi’s death was a breath-thieving, soul-shifting, mind-altering missile to the heart. It played like a trauma loop in my head the first three months after he died, robbing me of sleep and rational thought. It’s what I return to when I watch a movie and have to sit through someone’s end - wretched, prolonged, complete. It follows me to the shops, waits for me well into the night. It’s in the empty corners of my house and the warm embrace of my friends. It’s with me when I work and when I walk, when I drive and when I talk. It is my laughter and my tears, my anger and my fun.
I have watched my child die.
Listened as his body hungered for air it couldn’t find. Held him as he tried to claw back at life. Felt him get heavy when I told him he could leave. Walked him towards the light.
This is what DIPG did, and I want it gone.