Stories at the Edge

Christopher was only twenty-two months when he was diagnosed with kidney cancer. I met him after the many months of treatment had failed, and he had just celebrated his third birthday at the children’s hospice.

I vividly remember the first time I met Christopher. He was propped up in bed asleep, and the early summer sun poking through the branches of the tree outside the window had illuminated his blond curly hair into a blaze of light. He is an angel, I thought, even though I wasn’t sure I believed in angels. My eyes turned to see his Mom, also asleep, on the cot by the window. She was buried under a multi-coloured quilt and even in the innocence of sleep I could see her ragged face, her worried brow, the sorrow etched into her being. I thought of my little nephew born just months before and I ached for this mother and the sudden twist of fate that had absconded her from the life she thought she was living.

I got to know Christopher those next few weeks and saw how his brightness buoyed up the people around him, especially his five year-old sister Nat. She often sat on the bed with Christopher reading aloud from a book. I loved how she made up her own stories as she looked at the pictures, as most five year olds would, weaving tales that mesmerised her little brother. Sometimes she made up stories without a book and he was equally rapt. The siblings were inseparable. I often wondered how much Nat understood about his illness and whether she knew he was going to die. What was clear though was that she knew how to engage in the moment with him; she knew how to live in the imagination, a place where illness doesn’t have to live.

I always liked working the night shift as a young nurse. The hospice was quiet at night, for the most part; families tried to snatch rest, a blessed reprieve from the nightmare they were living by day. The playrooms were still, all the toys tidied away, as they waited in the dark for the welcome hubbub of the next day’s activities. At night I could calm myself more easily and as the months went by I grew less afraid of death. When I first started working at the children’s hospice death felt like an intruder, one that would ambush a family, cruel and punishing.

The children helped make death less frightening. They lived without much thought of the future unlike adults do. They helped us to connect in the present, to play and laugh, to live in a state of suspended reality that everything was okay, at least for a time.

I learned what equanimity meant— a deep steady intimacy with the way things are, beyond preference. I could resist, reject, rail against death as much as I wanted but it was of no help to do so. It was better to try and place these unfathomable losses into a larger view and not ask why or how these things happen. It helped to try to open up rather than close down—open to my own pain and sorrow, to the agony of the parents, to the faith that we as humans can help one another through the worst times of our lives.

The night Christopher died I worked the night shift. Nat had been sleeping in the family room but woke up around 3 am and asked her Mom if she could go upstairs and crawl into bed with her brother. Her parents took turns trying to get some sleep. Nat and her Mom and Dad both settled into the room with Christopher, and closed the door. They assured me they’d let me know if they needed anything.

From the nurses’ station, I could hear Nat talking to her brother, as she always did. Her chatter was comforting to me as I imagined what stories she might be telling him. Nat chatted incessantly for about two hours until suddenly the talking stopped. The quiet felt more deeply silent than usual.

I assumed that Nat had fallen asleep. At about 6 am we learned that Dad had woken with a start and looked over at Christopher’s bed. Nat was curled up around her brother and she was sound asleep. He must have taken his last breath in the quiet of the early morning, perhaps soon after his sister had dropped off to sleep.

I imagine how comforting it must have been for Christopher that his sister accompanied him with her sweet stories right up to the edge of his short life, until she could go no further with him and he couldn’t stay. Something must have called her from sleep at 3 am and she knew she had a job to do. I think of her to this day and wonder what she has chosen to do with her life, and whether she still tells her brother stories from her imagination.