When my husband was 7 years old, his father died of multiple sclerosis. He was used to his dad being wheelchair bound, but present. Then he was gone. John didn’t know what had happened. He wasn’t forewarned. He was considered too young to take to the funeral. He didn’t see the coffin. He didn’t say goodbye. Soon after, he left his family home — a charming farmhouse in Kent, South East England — and moved to a small apartment in London with his mother, who got a job as a cleaner. And that was that.
As an only child, this was a severely rupturing experience for him. He had no further contact with his father’s side of the family from that point on. His whole world had changed, but he didn’t know why. The loss of his father was hard to bear, but the lack of information was harder. It left a vacuum for his mind to fill in with fears and assumptions that would affect him for decades to come. As many children do when a parent dies without explanation, he wondered if he was to blame, if he had done something wrong to merit this extreme change of circumstances. His mom, who did her best by him, didn’t want to talk about it. She remarried a volatile man who drank a lot at weekends and may have had undiagnosed Aspergers. John’s father was forgotten and, in many ways, so was he.
At 17 he left home, crossing continents and decades to find something that might restore his sense of belonging. He didn’t carry bitterness, but part of him remained lost. The gaps were never filled in. When our daughter, Gabriella, was born over 40 years later I brought him to live in Kent. It was instinct. He was born here. This was the place he was wrenched from. This is where his father is buried. This is where her grandfather is buried. This was his home. He didn’t think he would feel anything nostalgic because so much time had passed. But it was like returning a captive lion to the wild. Something inside us recognizes where we have come from. It is a physical memory. When we settled here, not far from the farmhouse of his childhood, he knew this was the right place to raise our daughter — where her paternal roots run deep and her father’s wound finally closed.
Naturally, when I was diagnosed with “terminal” lung cancer this had a very strong influence on what we chose to tell Gabriella. She was 4 years old at the time and there was a strong chance I would be dead within six months.
“When I was diagnosed with “terminal” lung cancer this had a very strong influence on what we chose to tell Gabriella.”
There is no right thing to do in this situation. There is only the best discernment of loving parents for their children. We considered it very consciously, but were in complete agreement about what to do.
Much later, the issue was raised in my closed Facebook group for “cancer whisperers,” which I created earlier this year as a support network for cancer patients who are facing this kind of challenge. Some have told their kids, others haven’t, but their motive is the same — to minimize their children’s pain. I do not write this story to be right or to suggest anyone making different choices might be wrong. I offer it as a mother with incurable cancer whose choices seem to be working for my family and, in particular, for my little girl.
From the beginning, we told the truth. This is no easy thing to do with a 4-year-old and remains onerous over two years later. First, we told her I had an illness called cancer. “C for cancer,” she replied phonetically, as if the next word would be “D for dog.” Piece by piece, over a period of weeks, we gave her more information. Mommy was very ill. Mommy might not get better. Mommy can’t pick you up as easily as she used to (due to tumors on my spine). Mommy wants to spend as much time with you as possible because she might not be here on your next birthday. Mommy might die.
“Her understanding was limited, but she knew she could ask questions and nothing salient would be hidden.”
Her understanding was limited, but she knew she could ask questions and nothing salient would be hidden. She was included and, paradoxically, this made her feel safe. She wasn’t left to her imagination, which so frequently paints pictures more horrifying than reality, however harsh that reality is. When I was in hospital or went away for other treatments, she missed me but wanted me to go.
She knew I was trying to get better. She knew I was leaving because I loved her, not because she wasn’t important. We gave her a lot of room to join us on the journey, but very little room for her to make things up about what she was sensing and witnessing at home. Because, as my husband understood all too well, it is what we make up that adds anger to disappointment, resentment to loss, and suffering to sorrow.
The night her first tooth fell out, aged 5, I was tucking her into bed when she asked, “Mommy, what do we do when we die?”
“Our souls leave our bodies and go to God,” I replied without thinking. “Sometimes they come back to live in new babies and sometimes they stay in invisible places on earth to love their children from.”
I couldn’t answer this question with authority, but I listened to my heart and tried to be as true to what I believed as I could.
“If you die, does that mean you’re better?” she continued.
“No darling, that would mean I didn’t get better and you wouldn’t be able to see or touch me anymore. But my soul would find an invisible place to love you from.”
“Does dying hurt the soul, Mommy?”
“I don’t think so, darling.”
“Good. Because I love your soul, Mommy,” she said ever so softly before falling asleep with her tooth under the pillow, hoping the tooth fairy would come.
Not all our conversations have run this smoothly. By the time she turned six she fully understood what dying meant and came into my room one evening crying.
“Mommy, I’m scared you’re going to be deaded,” she declared, jumping onto my knees and throwing her arms around my neck.
I tried to reassure her that God would let me look down on her from heaven, but she started sobbing. “No, no, no!” she cried. “If God keeps you in heaven instead of letting you stay with me I will be angry with him forever!” I had set myself up for that. I didn’t really believe what I was saying. I just pulled it like a thread from a ball of yarn I’d had since my own childhood and spun something from it automatically. I was not in my heart but in my head, where truth eludes me and fear controls my tongue. There are times when it is enough to say, “It’s okay to be scared, darling. Sometimes I feel scared too.” Or to admit I don’t know the answer to her question and offer to look for it together. I can’t protect her from what is happening to our family, but I can protect her from pretense. Authenticity is her safety net in all this.
Mostly she is happy and confident. I feel well right now so there is no need to discuss it at all. Her teachers acknowledge us for the untempered joy they see in her at school, the absence of burden on her shoulders, and an emotional intelligence that is “way beyond her years.”
I plan to stay alive as long as there are medical options on the table and shards of grace on my doorstep. My greatest wish is to see her mature into adulthood.
I would ask her what it was like to grow up with the cancer that moved in with us, like a fourth member of the family, when she was just four years old: accompanying us everywhere; competing for her mom and dad’s attention; taking up room in our suitcases; pressing its face against car windows; crawling into our bed in the small hours and waking us up like a terrible dream.
“Would she be able to forgive the tensions that boiled over in her direction and my long absences from home when I was receiving treatment?”
Would she be able to forgive the tensions that boiled over in her direction and my long absences from home when I was receiving treatment? Was I right to tell her the truth instead of hiding my illness and pretending things were normal, whatever “normal” is supposed to be? Was it enough truth or too much truth, hard-to-bear or set-you-free truth? Would she duck life’s curve balls because of these beginnings or catch them and run with them, as she does with Frisbees in our garden, tracking their unpredictable path through the air before leaping to grab them in full flight?
There is so much I cannot control and so much I fear I will never give her. But before and beyond everything this is what I want for her: to leap at life, whatever it throws at her; to let reality strike her heart before her fearful imagination closes it; to find beauty in how she rises to each challenge and success in what she becomes as a result; never to have to wonder what happened to her mom or be blindsided by my sudden absence; to join the birds as they sing after a storm.
The Cancer Whisperer by Sophie Sabbage is on sale 1/24/17. (USA hardback) | Preorder
The post was first published on Medium.com on 9 December, 2016