There’s no place in the world I’d rather be.
I used to snuggle up to Levi any chance I had and say this to him. I would lay with him on his bottom bunk, surrounded by stuffed toys, and hold him until his little eyelids began to flutter and slowly close, the pause between each waking moment gradually getting shorter. We’d lie together like this every night, for as long as it took for sleep to finally silence the shadowy thoughts that were circling his head.
There’s no place in the world I’d rather be.
The world could wait. Give me the whitest sand stretching out to the bluest ocean, or a pristine line high on a deserted, snow-capped mountain, and nothing could compare to being here with you. Right here, right now.
Even in hospital, the ward buzzing with dozens of other tiny chemo-riddled bodies, we would carve out our own space together, where no one could get to us. I breathed in every microcosm of his being. Every touch, every smell, every look. Each moment the weight of a thousand normal moments. Drunk on a love so strong and so powerful it could transform the every day. And in that heady mix of love and loss – for I knew I would only get to hold him and look at him for a little while longer – lies the paradox. The highest of highs and the lowest of lows.
We were blessed to have Levi for eight wonderful years. The 12 months and 16 days post-diagnosis were the most heartbreakingly beautiful of our lives. We lived and loved as though our world as we knew it was ending, and it was.
Levi’s diagnosis was so rapid and surprising we felt like we were in a permanent state of shock. We spent the year trying to come to terms with it. We’re still trying. On the one hand, we had the crippling, unavoidable reality of his cancer, and on the other, we had a vibrant life which carried on, forever changed. We had a beautiful brave boy who went to school one day and treatment the next. A soccer-mad, energetic kid who could tear up the pitch with his mates, all the while undergoing experimental and invasive treatments.
When you receive a terminal diagnosis for your child, the anguish begins immediately. Torment is the word which best describes the experience, because it perfectly encapsulates the consistent and unforgiving onslaught of torture that it inflicts. It’s relentless, the turn of the knife. The decimation of hope, the anticipation of grief, the marathon of poking and prodding that you know will not change the dismal prognosis.
Until you have a child with a serious illness, you never know the private universe of really sick children exists, but there it was in plain and confronting sight. In our ward, it was choc-full of cancerous children, from babies through to late teens, all in various stages of treatment. Lots of bald heads. Plenty of yellowish skin. Many incredible children fighting battles that most of us know nothing about.
When Levi was diagnosed, we were offered radiotherapy. The doctor said it would be a temporary fix, that the cancer would inevitably grow and kill Levi. I asked why we should do it. What was the point of subjecting him to pain and suffering if it wouldn’t change the outcome? I am so glad we chose to try, because the last year of his life gave us a chance to really live.
As our journey continued, and Levi was in his “honeymoon” period where the radiotherapy had shrunk the tumour, many people, me included, would marvel at how well he was doing. I admit I even entertained the thought for a minute: he would be the one to win. Despite having the most aggressive and lethal cancer rapidly mutating inside his brain, Levi looked and went about life for most of the year like a “normal” seven-year-old boy. I use the term “normal” very cautiously because it severely diminishes the complexity of what he was dealing with and what our life was like. But essentially, he was remarkable in all that he achieved.
We accepted Levi would die from early on. This doesn’t make it easier to deal with or allay the shock. We just weren’t fighting an unrealistic expectation. That was energy we wanted to spend elsewhere. Some people spoke of miracles, that he would be the one to beat this. We acknowledged we were on borrowed time.
For Ben and I, our hope was never for a cure, because you can’t have that without an effective treatment. Our focus was always on having the best of times with Levi and as a family of five. So we got busy living. We travelled far and wide, swam with dolphins and sea lions, rode camels in the desert, saw the tallest building in the world, went zip-lining and skiing. We went to Paris so Levi could see his idol Ronaldo play, and watched in awe as he walked out with the match ball in front of tens of thousands of people. We holidayed with family and friends, went camping near the beach. We had sleepovers and play dates on school days. Amidst the adventures, there were meltdowns and tears, despair and alienation, loneliness and longing, grief and transformation. So many powerful emotions in a year that solidified our relationships with people who mattered most to us. Those connections, and the love we have for our three tiny people, have seen us through.
Looking back, what stands out the most from our year of living in the spectre of death is experiencing the extraordinary in the ordinary. It’s hard to remember the parent I was before diagnosis. How I felt about those simple acts of watching our three kids walk to school together. Of glorious afternoons trampolining and playing soccer in the backyard. Of daily bush walks with our beloved dog Milo. How did it feel before? Did I ever realise how exceptional these small wonders were? Because I do now. A long cuddle in bed is to be luxuriated. Holding a hand is breathtaking.
In our year of living and dying, I had many thoughts and discussions about Levi’s mortality. Trying to make sense of what was about to happen, I believed that having time to say goodbye was a better way to go, that the long farewell was better than a sharp shock of death. No final words there, no last kiss on the cheek. And in many ways, those 12 months were the most special time in our lives, full of all that we got to do and say, tinged with the heavy weight of knowing it wouldn’t last forever.
But the agony of knowing death will come to your child in ways we still can’t reconcile is the most oppressive thing to carry. Having to crush his last shred of innocence and dignity with the knowledge that his time had come. Then watching him struggle to his last breath because he didn’t want to go. That will never leave us alone.
Our saving grace is the life we built, the family we created, the love we share.
The beauty and the pain.