Why Sophie took the heart-rending decision to tell her little girl: Mummy’s dying
WHEN my husband John was seven, his father disappeared from his life suddenly and abruptly. he would later be told he had died of multiple sclerosis, a disease his father had endured for as long as John could remember.
he had grown up used to his dad being wheelchair-bound, but a loving presence in his life.
Then, without warning or explanation, he was gone. John wasn’t forewarned. he was considered too young to take to the funeral. he didn’t see the coffin. and he didn’t say goodbye.
Soon afterwards, he left his family home — a charming farmhouse in Kent — and moved to a small apartment in London with his mother, who got a job as a cleaner. and that was that.
Few of us can imagine how painful this must have been for him, an only child. he described it as being ruptured from his childhood. The part of his life that made him feel safe just disappeared without explanation.
he had no further contact with his father’s side of the family from that point on — no cousins, no noisy get-togethers, no cards, letters or invitations.
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 fearful imaginings that would affect him for decades.
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 immense loss.
his mother, who did her best by him, didn’t want to talk about it. She soon remarried a volatile man who drank a lot, and may have had undiagnosed asperger’s.
John’s father was forgotten. and, to a large extent John, packed off to boarding school aged eight, was forgotten, too.
This early experience had a profound effect on my husband. he left home at 17 to go travelling, crossing continents and decades, looking for something that might restore his sense of belonging.
he wasn’t bitter, but part of him remained lost. The gaps were never filled in.
Ten years ago, when we married, the only member of John’s family who attended the wedding was his son from his first marriage. This struck me as deeply sad.
Just two years later, we built a home together in Kent, not far from the farmhouse of his childhood, and found his lost cousins after half a century.
We hoped it would be healing for him. he was born here. This was the place he was wrenched from, where his father is buried — his first home.
he didn’t think he would feel anything nostalgic because so much time had passed — but something inside us recognises where we have come from. it is a physical memory.
When our little girl, gabriella, was born, we knew this was the right place to raise her — where John’s paternal roots run deep and her father’s wound finally closed.
as parents, we agreed we would always be honest with our daughter and raise her to be honest, too.
We couldn’t have anticipated how challenging this would become when we were blind- sided by some terrifying news. Two years ago, when i was 48 and gabriella four, i felt a sudden, sharp pain in my shoulder and i knew — just knew — that it was serious.
Three weeks later, John and i sat, stunned, in a consulting room, as we heard i had incurable lung cancer. We would learn, in the ensuing weeks, that it had spread to my lymph nodes, bones and brain.
i did not want to know my useby date, and was emphatic about that. i have noticed people who are told how long they have die when that time is up — not just because their doctors have predicted it accurately, but because they are expecting it. it seems to become a selffulfilling prophecy. John and i were also clear that we needed to tell gabriella what was happening as honestly and sensitively as we could.
We didn’t want me to disappear into the night, as his father had done, leaving her with unanswered questions. So from the beginning, we told the truth. This is very hard with a four-year-old and remains onerous more than two years later.
‘Mummy has an illness called cancer,’ i told her. ‘ c is for cancer,’ she replied phonetically, as if the next word would be ‘D for dog.’
Piece by piece, over a period of weeks, we told her more. ‘Mummy is very ill. Mummy might not get better. Mummy can’t pick you up as easily as she used to.
‘Mummy wants to spend as much time with you as possible because she might not be here on your next birthday. Mummy might die.’
her understanding was limited, but she knew she could ask us anything. 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 to make things up about what she was sensing or witnessing at home. Because, as John understood all too well, it is what we make up that adds anger to disappointment, resentment to loss and self-reproach to sorrow.
The night her first tooth fell out, aged five, I was tucking her into bed, when she asked: ‘Mummy, what do we do when we die?’
‘Our souls leave our bodies and go to God,’ I replied, without thinking. ‘And, sometimes, they stay in invisible places on Earth to love their children from.’
‘ Does dying hurt the soul, Mummy?’ ‘I don’t think so, darling.’ ‘Good. Because I love your soul,’ she answered very softly, before falling asleep with her tooth under the pillow, hoping that the tooth fairy would come. Not all our conversations have run this smoothly. By the time she turned six, she understood what dying meant and came into my room one evening crying.
‘Mummy, 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 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 for ever!’
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.
There are times when it is enough to say: ‘It’s OK to be scared, darling. Sometimes, I feel scared, too.’
Or to admit I don’t know the answer to her question and offer to find it together.
I can’t protect her from what is happening, but I can protect her from pretence. Authenticity is her safety net in all this.
Of course, I appreciate that there is no ‘right’ decision in this kind of situation.
There is only the best discernment of loving parents for their children in their particular circumstances.
I know of parents who have told their kids and others who haven’t, but their motive is the same: to minimise children’s pain.
I do not write this story to be ‘right’ or to suggest that 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.
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 ‘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 Gabriella 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 mum 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?
Was I right to tell her the truth, instead of hiding my illness and pretending things were normal?
Was it enough truth or too much truth, hard-to-bear or set-you-free truth?
Would she duck life’s curveballs 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 that 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 mum or be blindsided by my sudden absence; to join the birds as they sing after a storm.
The Cancer Whisperer: Finding Courage, Direction And The Unlikely Gifts Of Cancer, by Sophie Sabbage, is published by Coronet paperback, and as an e-book, at £8.99.