For me, hope was finally extinguished when the doctor turned and asked our permission to give up trying to restart our daughter’s heart. Until that point, through every second of her 19 months of treatment for leukaemia, I felt there was a chance that she could live, and that kept me alive. She was 5 years old.
The dreadful paraphernalia used against the swiftly attacking virus that accompanied the cancer had gone, and our little Juliette was left naked and defeated on the bed. I remember finding myself across her body, screaming. Nothing else is very clear after that.
I was heartbroken to read the story of the Puttick family, who committed suicide at Beachy Head after their son, Samuel, 5, died from meningitis. These were parents who had battled a chain of devastating events that took their only son and turned him from healthy toddler to quadriplegic after a car accident. They had drastically altered their lives to make his the best it could be, only to lose him to meningitis. They seemed a dedicated, strong and resourceful couple, devoted to each other and their child, and one cannot help but wonder at the state of mind that would have driven them to take their own lives.
The same evening that Juliette died, our families descended en masse. An awkward, grief-stricken crowd that surrounded us physically and provided a loving buffer between the rest of the world and my husband, Stéphane, and me. I veered between appalling clarity, where the weight of Juliette’s loss crushed the breath from my lungs, and the sense that something bad had happened to someone else, somewhere else, and that I was merely acting a part. My brain had stopped functioning normally, but total collapse was not an option. We had three other children.
When Juliette’s diagnosis ended our “normal” life just before Christmas 2000 she was a blonde-haired, twinkly three-year-old. She had nailed the art of making us laugh almost before she could talk and her irreverent impressions of people, including the Queen, were breathtaking. The diagnosis meant that she instantly became the centre of our life while our two other children, Elodie and Pierre, were shunted off to their grandparents. When she felt well, every morning was a chorus of “Let’s do something exciting today!” “Exciting” was anything out of the ordinary. An afternoon of cake baking, going out to watch otters or making an elaborate obstacle course from furniture all fitted the bill. Chemotherapy broke everything except her spirit.
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I was three months pregnant with Raphi when it happened, and for about 24 hours I considered having an abortion. A seriously ill child is a huge drain on your emotional and energy reserves, and I knew that I needed every last drop. Looking after Juliette became my focus as the most primitive of human urges engaged within me — I would fight to the death to protect my child. But leukaemia is no wolf, and instinct had to be submerged in the little things that I was able to do to help her. My helplessness in the face of her suffering could drive me mad with rage.
I hate to imagine the difficulty that Neil and Kazumi Puttick faced in coping with these primitive emotions for their adored only child. We loved Juliette no less intensely, felt no less despair when she left us, but we had other children. When we did not want to open our eyes in the morning, Pierre appeared at our side, a three-year-old demanding breakfast. Our youngest son, Raphi, was 13 months old when Juliette died, and his nappies did not change themselves. At 8am Elodie longed for school, which obliged me to get dressed and take her there. Being forced to go through the motions of caring for the other children gave us a rhythm, but the Putticks did not have that. They had an empty house, full of Sam and yet entirely without him.
After Juliette died my desperate longing to bring her back mutated into a desire to have another baby. There were a thousand good reasons not to, not least the fact that I was struggling to be any kind of mother to the children I had. I found that those early days of grief anaesthetised me from experiencing deep love, as though my subconscious was protecting me against the pain of another loss. It was hard not to want a distance from everyone, except Juliette, whose solid presence I craved like an addict. Holding the other children, guiltily I would shut my eyes and pretend for a few blissful seconds that they were Juliette. In this state I conceived, a mere three months after she had gone.
I wanted Juliette, and nine months later we were blessed with Celeste. She is wonderful, and her birth was as joyous as any of my previous four births. Perhaps even more so. Her middle names are Violet and Rose, for purple and pink, Juliette’s favourite colours. At Celeste’s naming ceremony I spoke about what her arrival meant to us after Juliette died and it was this: Celeste is our two fingers up at fate, a defiant gesture to show that we believe in life, in its goodness and limitless potential for beauty and happiness.
After almost seven years we can celebrate our luck at having shared a part of our lives with an extraordinary little girl who was loved by everyone who met her. With her irrepressible curiosity, humour and constant seeking out of what the day could offer, she opened my eyes to what life can be. I’m not afraid any more, because I’ve faced the worst event possible and survived.
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Steph and I, both previously couch potatoes, have fashioned ourselves into marathon runners. Elodie has organised cake sales in memory of her sister, and together we have raised nearly £20,000 for various leukaemia charities. After three years of writing I’m hoping to publish a book about the experience of Juliette’s illness and how it has been since she left us. I called it Watching Petals Fall. Recently I became a volunteer for the wonderful Compassionate Friends, an organisation that helped me so much when Juliette first died. Proof that I am no longer the shell that I once was comes to me when I take calls from newly bereaved parents on the helpline. These things have helped to restore meaning in our lives, but they all grew from the love that we shared with our other children, as well as from the love that we still have for our lost girl.
It is not always easy. Statistics are very poor for the survival of marriages after the death of a child and Steph and I have not been immune from problems. However, we both have an overwhelming desire to make our marriage and our family safe. Anniversaries and birthdays often hit me hard, but we have developed ways to cope with tricky times. As suggested by Elodie, on the anniversary we have a “no crying” rule. We do something out of the ordinary and fun that we know Juliette would have loved, and in this way I feel like we are tapping into her extraordinary enthusiasm for life. Last year it was a weekend music festival and this year it will be a West End show. If we’d had no other children, maybe we would have struggled.
Over the years I have had many hours of counselling, but above all we have been given fantastic support from friends, family and, in particular, my wonderful parents and sisters. This has been key. Juliette will always be a part of us. Celeste, who never knew her, talks about her as though she did. When we list family birthdays, Juliette’s is always there. I have found some peace in accepting that Juliette is never coming back; meanwhile we have four wonderful children who depend for their happiness and security on our love. They look to me and to Steph as an example of how to live. This alone gives me a purpose. I cannot change the fact that their sister has died but I can certainly do my best to make the rest of their lives that I am here for as great as I possibly can. And I have no intention of going anywhere soon. Juliette would remind me that there are too many things that I haven’t done yet.
The Compassionate Friends www.tcf.org.uk;
www.justgiving.com/geveslafosse