Beautiful symphonies

2892017_246f55b9

I went to a funeral two days ago. It marked the life of a wonderful man who had reached the incredible age of 102.

It always shocks me that I still I still find funerals difficult. I really try. As snow fell outside the ancient Gloucestershire church, I tried to stay focussed on my friend. In a voice taut with grief she read The Good Indian’s Prayer, a favourite of her Dad’s. I only made it to the second hymn before I was fumbling for tissues. It doesn’t matter how much I tell myself that I’m not there for Juliette and to stop being so self-absorbed, at funerals my thoughts always travel back to Juliette’s life, and to Juliette’s death.

I listened harder as others spoke about the spiritually good, full, and interesting life this grand old man had lived, and about the children, grandchildren and great grandchildren he had seen into the world. I felt admiration for this special person, and incredibly sad for all the things Juliette never achieved. Then I listened closer to how much the man had been loved, how he made everyone feel special and the way he had touched the lives of everyone he met, and realised they could have been talking about Juliette.

Really, it’s only about the length of their lives. Juliette could not have lived more fully in the time she had, and could not have touched more deeply those who knew her. If Juliette had been a soldier in India, a farmer, trained as a healer and brought children into the world, would her life have been better? Would she have been happier than the little girl who giggled through chemo and baldness, who found every day ‘itciting’ and made everyone she met feel a better person for having known her?

I will never find out. I have to bring my focus back to what she did do, how much she loved and was loved, and to remember that her short life had intense beauty.

“We cannot, after all, judge a biography by its length, by the number of pages in it; we must judge by the richness of the contents…Sometimes the ‘unfinisheds’ are among the most beautiful symphonies.” Victor Frankl.

Bumps and tears

wpid-20130323_175203.jpg

After I dropped Celeste at school yesterday, I took my usual route home round the fields with the dogs and met a heavily pregnant lady walking the other way. We chatted about overdue prenancies then parted, at which point I burst into tears. I couldn’t make sense of it until I realised that sixteen years ago, that was me. Juliette had been due the same day.

It still seems to happen to me, even after all this time. In the run up to birthdays and anniversaries something innocuous will trigger an uprush of emotion, and yet I’m not actually focussing on what time of year it is. It’s a funny thing, the subconscious.

There were tears again this morning. Steph’s been away in Germany for three days, and I was just so happy to wake up beside him. I know it’s soppy, and not the way I usually am, but I guess the self-protective layers are just a little thinner sometimes.

I have other reasons to be emotional at the moment. On Tuesday, Juliette’s birthday, I will be going to meet people connected with the new job I start properly after Easter. On the 26th March last year I spent the day cover teaching at our local prison for the first time. I had an exhilerating twelve months but sadly, the prison is now closing. This new job is the work I’ve dreamed of doing and I feel incredibly lucky, but a little scared too.

I’m trying to find it symbolic that these exciting first steps seem to happen on Juliette’s birthday. Juliette wasn’t afraid of anything. Lots of things frighten me, but I think of Juliette and her fearlessness, and have no more excuses.

How I live now

You're alive

I’ve been giving more thought than usual to how losing Juliette has changed the way I live. Writing Watching Petals Fall has made me examine the far-reaching effects her life and death have had on me , and I’ve started to wonder whether other bereaved parents feel like I do.

Juliette , more than any of my five children lived her life intensely. Every day she was well, she wanted to ‘do something exciting’ and sometimes, frankly, it was hard to keep up with her. Of course, I can say this with hindsight, but I think there was a part of her that knew she had to experience everything, and quickly. She went for it.

In our last week together, we took the children crabbing. Scary little beasts, crabs, and both Steph and I kept them at arm’s length – from line, to net, to bucket and then back into the sea. Juliette spotted some teenage boys handling their crabs and asked if we would help her do the same. We dismissed it as ‘a bad idea’ but the next thing we knew, Juliette had carefully picked up a nipping monster from her bucket and stood, grinning for a photograph.

That she picked up a crab when her parents were too scared, really sums Juliette up. She was brave, while we were afraid. Since she died, I often think of her crab as well as the other ways Juliette was fearless.  She would hold out her hand for the big, fat needle to be inserted into her beautiful skin without ever flinching, even without anaesthetic – she did not like the sensation of the numbing cream. The first time she asked for it to be done this way, she was just three.

The reason I’m saying all this is that Juliette died. I’m her mother, and I’m alive. Every parent knows how I wish I could swap, but as no one gave me a choice I owe it to Juliette to be different, be more like she was, to live fully because she no longer can.

I think more about the golden times in each day. They are fleeting and easily missed. Without meaning to sound like a total buddhist, I try to remember to live in the moment, be aware and be grateful for sunshine, birds singing, hearing the children’s laughter, and for how close I feel to Steph as we chat and walk the dogs. These things aren’t ‘exciting’ by Juliette’s definition, but being aware of the pleasure small things bring and the value they add to my day is new, and thanks to the little daughter who is no longer phsyically with me, but who is more present in my life than ever.

The worst day

It seemed wrong to post the chapter without the preceding one. This is it.

Chapter Seven

The Calm before the Storm, from Watching Petals Fall

Juliette always loved being outdoors, but our garden was tiny. The house had been a school, and a large part of the playground area was once the village’s air raid shelter. When the school moved to a new building, developers had turned the shelter into a huge garage that now dominated our outside space. Juliette had the idea to knock it down.

Steph and I found reasons not to do it. Where would we keep all our stuff? Could we afford it? As the garage formed a barrier to the road, we wondered how we would contain the dog once it had gone. Juliette however had visions of grass to play on and nagged me to call demolition companies until I relented.

Amid a great deal of mud and argument with the contractor, the garage and rubble from the foundations were finally removed, and Steph, Elodie, Juliette, Pierre and I spent a day digging and raking the ground in preparation for laying the turf. By early evening Elodie and Pierre had given up, and Steph and I were exhausted. Not Juliette, though. She continued raking well into the twilight, all by herself.

In June, the country celebrated the Queen’s Golden Jubilee. Juliette was excited by the pomp and passion of the Jubilee and with photographs and film clips of the Queen everywhere, she developed her own startlingly realistic impression of the monarch. She captured the Queen’s eyes, her walk, demeanour and imaginary crown jewels. She loved it when people laughed.

The girls’ school put on a special production celebrating the years of the Queen’s reign and the annual village fete had a Jubilee theme. Elodie and Juliette painted each other’s faces and decorated umbrellas with red, white and blue before joining a procession of other villagers from the green down to the main field where the fete was taking place. Union jacks fluttered in the sunshine and a brass band played.

The fete weekend was the point where we were finally able to walk on our new turf. We were all pleased with how it looked but it was Juliette who initiated picnics, games of football and lay stretched out to luxuriate in the space.

Two weeks later Dido and her husband, Mike came to England with their children. They had arranged for their four-month old baby, Sophie, to be baptised by a friend of theirs in London and had asked me to be one of the godmothers. Sophie wore the christening gown that my grandmother, who we called ‘Baggy,’ had embroidered with a new flower for each baby that wore it. When Baggy died soon after Pierre was born, my aunt and I tried to continue the tradition, but lacked her vision and skill. After Sophie’s christening there was a lunch party at my dad’s weekday flat in West Kensington. Juliette was not well. She spent most of the afternoon curled up in Steph’s arms.

After a few days, Juliette was better and we joined the rest of the family at my parents’ house. They had heated their small pool and the garden rang with shrieks of joy from the children in the water. Dried off, they ran around playing an elaborate Harry Potter-inspired game. Both boys wanted to be the lightning-scarred hero and Elodie and Annie shared the role of Hermione.

‘Which character are you, Juliette?’ I asked.

‘Susan Bones,’ she replied, wielding her twig wand with a giggle.

‘Susan Bones?!’

‘Well, I didn’t want to be the same as everyone else.’

Cousin Harry celebrated his sixth birthday while we were there. On my parents’ piano Elodie had taught herself the basic notes of ‘Happy Birthday,’ and she played as we sang to the little blond boy. He blew out the candles on his special Spiderman cake, which Dido had spent hours making. It was a work of art. Dido first honed her skills from library books, creating the three-tiered walnut cake Steph and I had at our wedding.

After the weekend we all dispersed, but gathered again at our house a few days later for Raphi’s first birthday. We had a party in the garden, with a shop-bought cake. Juliette was at her healthy best, loud and giggly. She played football with the other children and Tarik. ‘Why aren’t you filming me, Mummy?’ she asked.

Dido took her family back to the States, and Elodie, Juliette and Pierre settled back into the last weeks of school and nursery before term ended. The weather was beautiful and on one Saturday morning, I took them to pick strawberries at nearby farm. I wanted to make jam for the first time.

Elodie’s picking started well but she soon got distracted, chatting and eating many of the berries from her basket. Pierre stuck close to me, gabbling his thoughts excitedly as his chin became ever more red-stained. Juliette did not say a word. She started close to me but then marched across the field in pursuit of another group of pickers. She guessed correctly that they had found a good patch.

Coming home, they all sat with baskets on their knees and Elodie and Pierre continued to pop berries in their mouths. Juliette was almost in tears. ‘Don’t eat them,’ she pleaded, ‘they’re for Mummy’s jam!’ She herself did not eat even one.

On the 6th of July, we set off back up the A12 for our second holiday in Southwold. The children were thrilled to be back in the same house we had rented the previous year, with Elodie and Juliette happily rediscovering their attic bedroom. Pierre’s little room now had to accommodate a travel cot for his baby brother.

The familiarity was lovely. We beat a well-trodden path to the little supermarket on the high street for supplies and bought boogie board floats for the children. Without her Hickman line, this year Juliette could swim. As the children were a bit older, we had packed plenty of card and board games. We played these at the kitchen table when the weather kept us inside.

It was familiar, yet so unlike the previous year. Not being heavily pregnant, I had more energy for activities but the most striking contrast was Juliette. She seemed a different person to the fragile one of our last holiday. She squawked with her brothers and sister, doing a wiggly-bottomed naked dance at the bedroom window, to her own hysterical giggles and Elodie’s horrified ones. All the time the girls sang a song they had learned that term at school. It was called ‘Dreaming of a Summer Holiday.’ They tried to teach it to Pierre, and Steph and I learned the words by exposure… Dreaming, of going on a holiday with sun and sea, going to places I’ve never seen before, out of doors…

Steph and I felt at last that we could relax. Juliette clowned and we laughed, and all at once, I pictured her as a teenager with Elodie; the first time I’d been able to imagine her future since she’d been ill. I told Steph. It felt like a good omen.

Always in a hurry to get to places Juliette would stride ahead of us in the mornings, dragging her crabbing net on the ground, her pink bucket slung over one arm. ‘Mummeee, what are we doing today…?’ became a refrain that Elodie and Pierre took up that week, in parody of Juliette.

Most days we tried to get down to the beach, although it was often not warm enough to stay very long. We visited the local Otter Sanctuary. Dragonflies zipped out of the long, lush grass all around us, and kingfishers swooped over the surface of the clearest river I have ever seen. Elodie, Juliette and Pierre gathered feathers to make Native American headwear. On another day, we drove to Norfolk to see the aunt I called ‘Old Aunt’ and her husband, my Uncle William. My cousin Sarah joined us for an outdoor tea and treasure hunt with her two children. My uncle, who had spent the later part of his career photographing ballet dancers, took pictures of all the children playing in the garden.

We ate fish and chips at Southwold estuary harbour, leaving the car there to walk the mile or so along the beach to the town. Elodie, Juliette and Pierre ran ahead, wading through puddles left on the sand by the retreating sea.

‘I think I’m in heaven,’ I said to Steph. Juliette appeared beside me stuffing pebbles and shells into my pockets.

‘Only white ones, Mummy.’ One of her stones had a hole all the way through it.

‘That’s good luck!’ I told her, and she grinned. I wondered if she was humouring me – Steph joked that I had missed the beautiful tropical horizons on our honeymoon because I spent too much time scanning the ground for pebbles and shells – but it was a lovely thing to share.

The next day we crossed the estuary on the Walberswick Ferry to catch crabs. The ‘ferry’ was just a man with a rowing boat and the children sat three abreast, bubbling with excitement during the ten minute journey. I sat with Raphi on my lap and Steph struggled with the pushchair.

On the estuary bridge at the other side, seagulls hovered as we tied strips of bacon to our crabbing lines and waited for a bite. I helped Juliette. She loved scooping the crabs up in her net and dropping them into the bucket. She was fascinated by a group of teenage boys who were picking up their captured crabs and holding them aloft before releasing them beside the water. ‘I want to hold a crab, Mummy.’

‘No, darling, it’ll nip you,’ I said, too scared to help her. I turned to give Pierre a hand untangling his line.

Juliette was quiet for a few minutes then said, ‘Look, Mummy!’

She was holding her crab. Its claws flailed but they could not reach her fingers. She looked so proud. ‘How on earth did you manage that?’

‘I watched to see how the boys did it.’

For the second year running, Saz and Tarik came to stay in a nearby Bed & Breakfast for the weekend. We took them crabbing, played boules, and Tarik read stories to the children.

We had arranged for Juliette’s blood test each Monday at Ipswich hospital. The first test had been fine and the second time we went in, Juliette and the others played noisily in the waiting room. It made me realise again how different things were and how relatively relaxed we had become. Juliette’s blood test was still normal.

We promised the children an ice cream and kite flying at Dunwich beach on our way back to Southwold. Steph and Elodie took charge of the kite, and Juliette was bored. She came to sit next to me, letting a stream of pebbles flow from her fingers between Raphi’s chubby, outstretched legs. He reached out to catch them as they tumbled. A ghost of the image of Juliette amongst the petals in London passed over me. I took pictures, while Steph, Elodie and Pierre flew the kite in the distance beyond us. On the way back to the car, we found an enchanted-looking grassy dell on the scrubby heath, and I told the children I saw fairies there.

The next morning, Juliette came into our bedroom early. She did not feel well, and I checked her forehead for a temperature. She was hot. We knew though from the previous day’s blood test that she was not neutropaenic, so we relaxed. I opened the curtains. Grey clouds threatened rain so it was easy deciding to play games at the house and not go anywhere. Juliette lay quietly on the sofa beside us, covered with a blanket. ‘Do you feel any better, darling?’ I asked her at bath time. She shook her head.

‘Mummy, can I sleep in your bed tonight?’

In the eighteen months of Juliette’s illness, I had tried to keep some rules, and one of the rules was she always slept in her own bed. ‘Yes, you can sleep with me,’ I heard myself saying. Steph wouldn’t mind spending the night beside Elodie.

Juliette fell asleep while I read my book. I switched off the light and put my arms around her. My hands felt cool on her hot skin.

When I woke up on that sunny Wednesday morning, I spent a few moments studying my daughter’s beautiful sleeping face. She seemed to sense me watching her. She opened her eyes and a long look passed between us, like the ones we had shared when she was a baby.

‘How are you feeling, my darling?’ I asked. ‘Do you want to do something exciting today or would you like another quiet one?’

‘Another quiet day,’ she said, closing her eyes.

I went downstairs where the others were eating breakfast. ‘I think I’ll take Elodie and Pierre to the Transport Museum,’ said Steph. ‘They loved it last year.’

Elodie went to see Juliette, still in our bed, to let her know what they were going to do. Juliette cried. ‘I’ll get up,’ she said. ‘I want to go to the Transport Museum too.’ She wasn’t well.

‘How about if they just go crabbing at the harbour again,’ I said. ‘You wouldn’t mind missing that, would you?’ Juliette shook her head. As soon as the others had gone, Juliette got up.

‘Let’s play the Shopping Game, Mummy.’

She just wanted me on my own, I thought.

I didn’t mind. We played the card game she chose, and afterwards she wanted to draw. She picked up an electric pink felt tip and traced around her hand, colouring it in and then used a purple one to write ‘J u i l e t t e L a f o s s e’ solemnly within the shape.

She was colouring, but then all of a sudden she stopped. Her pen fell with a thud onto the paper. She looked up at me. Her skin was grey, her eyes dark-ringed.

‘Darling, you really don’t feel very well do you?’ She shook her head. I took her temperature again. 38.5⁰. I did a quick mental calculation and realised that after two days, it was possible she was neutropaenic.

I rang Steph on his mobile. ‘We have to take her in, don’t you think?’ I asked him.

‘Yes. Can you come and pick us up in the car?’ We agreed that Steph would stay at the hospital if necessary, because I was still breastfeeding Raphi. I phoned the hospital, packed an overnight bag for Steph and walked with Juliette to the car.

The others were lined up on the harbour wall. Steph threw their crabbing lines and buckets into the boot, and we swapped seats so he could drive. When we got to the hospital, a nurse showed us into a tiny side room on the day ward while they prepared to take blood from Juliette.

It was a routine we had been through hundreds of times. I bought a newspaper but unusually, I could not concentrate to read it. Juliette was sleepier than normal, and snapped at us all if we sat on her bed, or if Elodie and Pierre were too noisy. She refused the fish fingers a nurse brought her at teatime.

As we waited for Juliette’s results, the fever started to make her delirious. I asked her what she was trying to say, but this too made her irritable. She needed a wee so I took her to the little cubicle across the hall from her room. I held her as I often did when she was ill, kneeling on the floor so I could put my arms around her to support her weight. We were like that for a while until I realised she had gone to sleep. I tried to lift her up but then she woke and said, ‘No, Mummy I do need a wee.’ Eventually I did take her back to the room, to find a young doctor with a small sheet of paper in his hand.

‘She’s not neutropaenic,’ he said, ‘and all her other levels are normal. There’s no reason for us to keep her in, which is good news,’ he smiled. ‘You can carry on with your holiday.’

I had always hated being in hospital. Over the previous year and a half, my heart sank each time Juliette had to be admitted and I felt huge relief when she was well enough to leave. In that moment however, I did not feel relief. I felt anxious. Something was not right.

I exchanged a look with Steph, and knew he felt as I did. ‘I think we would rather she stayed in tonight, if that’s alright.’

The young doctor shrugged. He did not know Juliette. All he had was his experience and the results in front of him, and neither of those told him that our daughter needed hospital care. He sighed. ‘Alright. I’ll find her a bed.’

It was by now early evening. We were a forty-five minute drive from Southwold and Steph persuaded me to leave so that I could get Raphi into bed. He was getting tired. I drove back, hoping that none of them would fall asleep on the journey. After a quick bath and a last feed for Raphi, I settled him into his cot. I realised I had forgotten to get Pierre’s pyjamas out of the room and instead of risking waking the baby, I found some nightclothes of Juliette’s for Pierre.

It made sense for him to sleep in Elodie’s room. I read them a story and as I went to switch off the light, I looked at Pierre. He lay in Juliette’s bed wearing her favourite pyjamas, and suddenly I had a horrible premonition.

It was not the first. More than once I thought, ‘maybe that’s the last time I’ll ever see her alive,’ as I left hospital in the evenings, but this one seemed especially poignant. Pierre had physically taken Juliette’s place next to Elodie, and was wearing something of hers. What if that meant that Juliette was never coming home?


 

Chapter Eight

18th July

Steph called me on my mobile at about eight the next morning. ‘How’s our Looby lu?’ I asked.

‘She’s OK, she slept really well. Hang on…’ Steph laughed, ‘she’s asking what time breakfast is. I’d better go, you know what she’s like! Don’t rush to get here. They’re talking about keeping her in one more night for observation.’

We pottered in the house; Elodie and Pierre watched some television and we played a couple of board games. Late in the morning, we headed off to the hospital. I switched on Radio 4 as I often did in the car. Woman’s Hour was on. One of the segments had interviews with kindly voiced women and after a few exchanges, I realised they were from a firm of all-female undertakers.

The undertakers were telling the interviewer about how they tried to make things easier for the bereaved. One of the families they mentioned was grieving for a man who had been a keen angler, and the undertakers suggested their loved one be buried in his fishing clothes with some of his equipment. This had made the family laugh. They seemed lovely, sympathetic, and made death sound peaceful and acceptable.

During this reverie, my mobile rang. It was Steph.

‘Oh…you’re on your way!’

He sounded relieved, but strange and tense.

‘Why? What’s going on?’

‘Well… Juliette started being sick and there are traces of blood. They want to put a camera in her stomach to find out why.’

‘God.’

‘She’s been moved to a high dependency room so she’s nearer the nurses.’

‘OK.’

I started to drive a bit faster, wondering if a policeman would believe me if I got stopped.

 

***

Steph is standing in the corner of the room. I have never seen him look like this; hunted, helpless and lost. Juliette lies naked on the bed, struggling to breathe through an oxygen mask. My eyes go back to Steph.

‘What’s going on?’

We have walked in on a surreal scene. We’re used to the drill and rhythm of hospital but what is this? Nurses bundle Raphi, Pierre and Elodie out of the room.

The bearded consultant addresses me in his dull monotone. They don’t know what is happening to Juliette. He says they need to find out. They want to sedate Juliette so they can put a camera in her stomach to find out where the bleeding is coming from.

Holy shit.

I’m next to Juliette.

‘I love you so much.’

She says something but it’s muffled and I can’t hear.

‘What darling?’

In frustration, she shouts through the mask.

‘I love you too!’

Minutes pass.

Suddenly her body convulses, her eyes roll back in her head. She is still. Alarms go off. The rhythmic tick, tick of the heart monitor stops and now it’s a continuous noise.

In slow motion, a nurse hits the button behind Juliette’s bed. Where is the doctor now? I’m not part of the scene any more. Someone pretending to be me keeps yelling ‘Come on!’ in falsetto. I try to go near Juliette but arms bar my way. I remember we must give them space, to help Juliette. Steph and I grip each other’s hands, nails in our flesh.

Where are they? Why are they being so slow?

The crash trolley appears. I can’t see what’s happening but suddenly there is the tick, tick again. Thank God. It’s over.

The consultant is in front of us. We are relieved, grateful, but he says Juliette needs intensive care. OK. I try to call my parents, on holiday in France. I get only my father’s voicemail.

Adam picks up the phone when I call. His voice is so comfortingly normal.

‘Hello?’

‘Adam, come to Ipswich hospital. Juliette’s had a heart attack. She’s being moved to intensive care.’ He wants to get Dani but as he is talking, they wheel Juliette’s bed out of the room and Steph gestures at me urgently to come with them. I hang up and from nowhere appears a nurse. She says she’s from intensive care. She grabs our arms and we run. We have to use a different lift from the one Juliette is taking. It’s the long way round so we run faster. People stare at us.

Why are we running? She’s out of danger, isn’t she?

It’s like acting in a play, not real.

Juliette is unconscious. They fiddle with their machines and then the tick-tick stops again. Alarms go off and the room fills with people. A fog descends. The doctor who last night told us to take her home is injecting something into Juliette’s groin. He is shouting, writing furious notes on his shirtsleeves, on the flesh of his arm. A crowd of male doctors talk loudly at the same time, consulting each other. One of them says he was sent there from Addenbrookes. They don’t speak to us. I don’t know who’s in charge. I see Juliette’s naked body rise up off the bed as they shock her again and again. Agonising minutes, then the infernal, continuous tone of the heart monitor is broken, and there is the tick, tick again.

It’s OK.

Slowly the room empties and a comforting female presence of nurses remains. They start cleaning the blood off Juliette’s legs where needles have punctured her. I want to help. They hand me some wipes, smiling. Someone brings a strange paper blanket and they blow hot air into it, to warm her up. It’s so soothing after recent horrors. I can be Juliette’s Mummy again. I talk to her, although her eyes are still closed. I tell her she should be pleased about the blanket, because it’s pink.

Suddenly her eyes are open. I am the first to notice and the nurse goes to fetch a doctor. He shines a light in her eyes. The nurse standing near Juliette turns round and smiles at us. Juliette’s pupils are contracting. It’s a good sign. Does that mean she’s going to be alright? Brain damage is possible after the first heart attack, but I don’t care and don’t believe it. She looks so wise lying there, so beautiful and inscrutable, like a sphinx.

The doctor is happy she’s opened her eyes, but now they have to sedate her. Awake, she might resist their efforts to help her and that’s too dangerous. I can’t watch this; to get her back and then lose her again to a drug. The kind nurse who ran with us, asks us to go and sit down in another room; have a drink. She promises to fetch us if things change. My head is splitting; it’s been three hours and we’re so tired. We go.

We sit there for a minute then the nurse is in front of us. We are on our feet, running back to the room and it begins again; doctors, noise, shocks, injections, running, shouting, the hellish, unbroken tone of the heart monitor.

I’m sobbing. Steph and I grip each other. I pray desperately, plead for something to change. The nurse takes my hand and says something about prayers. She’s kind but I want her to shut up. Save my daughter. Juliette’s losing her battle; doctors are looking at each other, the frenzy is losing momentum. I’m screaming in my head.

Don’t you dare give up! This is Juliette…

‘DON’T LEAVE US!’ I shout.

We need you. Please. Don’t leave us…

The bearded consultant turns towards us, ‘I think we’re getting to the point…’ but his voice trails away. Something has given him hope, but only briefly. Again, he faces us.  ‘Really, we’ve done all we can.’ Like a half-finished project. We have to agree to let this man tell the other doctors to stop trying to save Juliette’s life.

No. I don’t accept it. I can’t accept it.

Steph and I were standing together at the end of Juliette’s bed. He turned to me, his face twisted. ‘I’ve let you down. I lied to you. I told you she wouldn’t die.’ We clung to each other.

All the people and all the machines were gone, wires detached, screens switched off. Our small daughter lay stretched out and naked. After the horror of the previous three hours, she looked utterly beautiful, peaceful. Sleeping. The only evidence of her fight the needle marks that covered her.

She did not look like someone who had died. That’s the cliché. She looked like herself, dreaming. I fell across her, screaming. I don’t remember anything else.

I was sitting in an armchair as the young doctor placed Juliette in my arms, his shirtsleeves still covered with numbers and symbols. I was transported back to the moment after she was born. He said, ‘sometimes the air when leaving the lungs…’ Yes. She might make the sound of a live child.

I held Juliette, and she was warm; peaceful. It was truly like that moment after the chaos of birth. My head mixed up the times, and I started talking to her like a baby newly born.

Only she was newly dead.

I whispered to her, saying I had held her in my body for nine months and from now on I would hold her in my heart. In that moment, it was an intense and comforting certainty. I could bear it.

A nurse told us Dani and Adam had arrived. They were on their way up to the unit.  All I felt was relief that my little sister missed the scenes we’d just witnessed. The nurse asked us if we wanted them to be told before they came into the room. Yes. Suddenly I felt nothing at all. I was blank. Empty.

With her purposeful stride, Dani came into the room. Tears burst out of her eyes when she saw us, and every muscle on her face sagged.

That’s what I must feel, somewhere, I thought.

At some point I said to Steph, Elodie needs to know. We should let her say goodbye to Juliette. He went to fetch her from the playroom.

‘Does that mean I don’t have a sister any more?’ were the first words she said. Steph hugged her while she cried.

Dani and Adam looked after Elodie. We took it in turns to hold Juliette, drifting between ‘her’ room and the family room. I had a migraine. We made phone calls. I rang Dido, sleeping in the Californian dawn but she couldn’t form any words. She hung up and just screamed, until Mike woke up.

Dani told our parents. They were at a French airport, about to board a flight home. I went back into Juliette’s room where Adam was holding her. He had a horrified, stricken expression. I took Juliette from him. Her face had lost its colour, she was no longer warm and her body had stiffened. It was too real.

We left the nurses to dress Juliette in the only clothes she had there; her favourite blue pedal pushers and a long sleeved T-shirt saying ‘I love pink’ in three different shades. They were not even clean. She had no shoes.

Perhaps we were not expected to stay so long. They must have thought we had left, but we hadn’t. We went back to Juliette’s room to say a last goodbye.

She lay on the bed, dressed, with an oxygen mask over her face.

I screamed. The female porter whipped the mask off. ‘I put it on her so members of the public wouldn’t get suspicious,’ she explained.

So ‘the public’ needed protecting from the sight of our daughter being moved to the mortuary? She was going there alone, without me or Steph. How could she bear it? How could we bear for this to happen to her?

I unzipped the overnight bag and pulled out Juliette’s soft rabbit. ‘Can this stay with her?’ I asked a nurse. She can’t sleep without it, I wanted to say. The nurse looked worried, and exchanged a look with another woman who quickly left the room. When she came back, she had a hospital wristband. She fitted this around the rabbit’s paw. I belong to Juliette Lafosse, it read.

Of course. In the mortuary, Juliette would not be able to tell anyone the white rabbit was hers.

The bearded consultant appeared. ‘We don’t know why this happened to your daughter, so there will have to be a post-mortem,’ he said. I blinked at him and wondered why he had used those words; post-mortems were for dead people. I hated him.

We went to collect Pierre and Raphi, still playing on the children’s ward. The women looked sad, sympathetic and they gave us some toys from the hospital playroom. I did not understand why.

Steph found the car. I had no memory of where I had parked it. He hugged me before we got in to drive back to Southwold. Dani and Adam followed, to help us pack up the house.

When we had left the house that morning, Juliette was still alive. Her pink mackintosh lay on a chair; her bucket of white stones and shells was by the door. On the kitchen table was the last drawing she had done as we sat together alone. Steph saw it now. The pen lay where she had dropped it across her drawn-around pink hand. Proud purple letters spelled out her name.

Hand

That smile

image

I have lots of pictures of Juliette in frames around the house, but the thing is, they’re old and I’m sadly used to seeing them. But I found this picture at the weekend, tucked between some papers and other photos, and it feels new. I love how she’s looking straight at you. She often is in her photos. It’s almost like she knew how much they would mean.

Am I still allowed?

053  This evening I was driving back from work, and there was a programme about New York on the radio. I spent a student summer in New York working close to Battery Park, a part of the city that was devastated by Hurricane Sandy. A man interviewed was talking about how people died in the huge tidal surge, which in turn started me thinking about the tsunamis that have claimed lives and how it would feel to lose your child in that way. Would they be frightened?

Was Juliette frightened when she died? I don’t know. Medics were trying to save her and I was standing at the other side of the room with Steph, helpless. She had been conscious a few minutes before or at least, she had opened her eyes. I spoke to her. I could have told her not to be frightened, that I was there and that I loved her. Instead, everything I said was nonsense. I didn’t know they were the last words of mine she would hear. Thinking about this on a five-minute car journey, I cried.

I have had more than ten years to meet other people who have lost children, most of them more recently than me. Remembering how I used to feel when Juliette first died, I try to present a hopeful picture of what long-term bereavement looks like. In the aftermath of Juliette’s death, the last thing I could bear to know was that it was still going to hurt after ten years.

Of course, the future IS hopeful. I look at my family and I’m grateful for the happiness we have, and while the pain is still there, it is a familiar pain. Any firewalker or bed of nails sleeper will tell you how that works. The point is after ten years, am I still allowed to cry?

No greater agony? Really?

maya angelou

‘There is no greater agony than bearing an untold story inside you,’ said Maya Angelou on my Facebook feed yesterday.

I love Maya Angelou, or at least I love her poetry but this statement made me cross. If containing an untold story is the greatest agony you’ve ever suffered… then wow, you’re extremely lucky. Personally, my insides are bursting with stories I can’t tell but on the other hand, my daughter died.  The agony does not compare.

With my indignant response typed, I hesitated before hitting the return key. It was an invitation for a flaming from her many admirers, and I was not feeling robust enough to argue just why losing a child hurts so much. The pause gave me a chance to think about what Maya Angelou had really meant.

Storytelling is an essential part of what it is to be human. Since we’ve had words, we’ve been grouping them to express the trials and joys of our mortality and the stories we tell of our own lives place a stitch in the vast tapestry of human experience.

Juliette’s life is part of my story, and that part is not untold. Being able to write about Juliette and to share her with other people has been a huge and healing part of my grief.  In writing, I untangled some of the unwieldy thoughts and feelings about losing her. My words say, ‘Look, she lived once, and she was amazing.’ If what I’ve written shows others you can suffer the worst of life and not just survive but find happiness again, then my tapestry stitch is a big pink one. Juliette loved pink.

So perhaps Maya Angelou is right. How much more would I be hurting if I had not written the book?

I do think we are better for expressing ourselves, especially when we have big stuff to say. I see this time and again in prison. Men join the class convinced they have no story to tell. I start by asking them to list ten beautiful words, then ten ugly words, or make a list of places where they felt happy, frightened, inspired or where they felt loved. It prompts buried memories. As their words flow and others respond, the value of their own story dawns on each one of them. They don’t feel exposed because our group’s stories overlap. They feel listened to, validated, released. They make a stitch on the tapestry.

Perhaps never having had the chance to do this before, is the agony of untold stories to which Maya Angelou refers?

Juliette is ill – from Watching Petals Fall

526465_10151300794538549_500805659_nI picked myself up off the floor and went back to the recovery room next to the theatre. Juliette was still wailing, and struggling against the arms stopping her from pulling the Hickman line out of her chest.  Making a conscious effort to compose my face, I went over to where she could see me.  My hand found her cheek, and I slid my fingers into her soft hair.  One of the nurses smiled broadly at me.

‘This is a good sign,’ she said, nodding at Juliette.  ‘She’s angry with us, and that means she’s a fighter!’

Steph echoed these words to me in my many hours of fear and doubt, but right now I realised I needed a game plan.  I was twelve weeks pregnant.  Not, I thought, too late to have a termination.  I would need all my reserves of energy and time to devote to Juliette and a new baby would not allow that.  No sooner had I formed this thought, than I knew that an abortion was out of the question.  My fragile mind might not recover from the guilt, and what if Juliette’s fight was unsuccessful?

Back in Juliette’s room some time later, Dr Nicholson, a young man with a daughter of Juliette’s age, so he told us, announced ‘Good news!’

He explained that there are four main types of leukaemia, but two that generally affect children.  A lumbar puncture showed that Juliette had the ‘best’ one, Acute Lymphoblastic Leukaemia.  We certainly felt good news starved, but we stared at him as blankly as hunger victims. The prognosis was better than with Acute Myeloidic Leukaemia, but it was not exactly our idea of good news.  His efforts to reassure us were heroic, but our daughter still had cancer.

Juliette was very sick after the anaesthetic. When she was not throwing up she lay listlessly in her bed, refusing anything to eat or drink.  Her face had already started to puff up with all the fluid they were putting into her. She looked ill. The previous morning my girl had seemed healthy and normal.  Twenty-four hours later, these doctors had transformed her into a cancer patient.

Steph went home to relieve Emily, our fantastic young childminder, who had dropped all her other commitments to look after Elodie and Pierre. My good friend, Kate, stalwart ally in a crisis, had offered to have them to stay for the time being. I worried about Pierre.  He was a baby, a couple of weeks short of his second birthday and could not possibly understand why one of his sisters and both his parents had suddenly disappeared.

Dr Nicholson put his head round the door again and asked if he could see Steph and me in his office.  He wanted to talk about Juliette’s planned treatment regime. I explained that Steph would not be back until much later. Reluctantly the doctor allowed my mother to take his place, with the proviso that Steph give written permission for any treatment decisions.  NHS procedures had begun to impose themselves over our drama.

Dr Nicholson started talking solemnly about grades of the disease, and about how the initial abnormal blood count level determined the treatment protocol.  Juliette was graded B.  This was not as good as A, but better than C.  At 103,000 abnormal white blood cells Juliette had narrowly avoided being graded C.  He explained that her treatment regime would involve an initial course of chemotherapy, strong enough to get her into remission. Once this had occurred after about three weeks, she could come home.  Follow-up intravenous and lumbar chemo treatments, as well as oral chemotherapy and steroids would last for two years.  I asked the question that I had not even dared consider until then.

‘What are her chances of surviving this?’

An awful hush descended like a blanket on the room.  I felt my mother stiffen as she sat beside me, our senses entirely on the response from the doctor.  At last, he looked at me.

‘About 60%.’

A wall like the blade of a guillotine, fell between me and the rest of the world.  I think my mother started to cry.  For the second time in twenty-four hours I was devoid of emotion and of expression as Dr Nicholson explained that Juliette’s very high abnormal blood cell count suggested that her disease was particularly aggressive. That was why intravenous treatment had to begin immediately.

Many well-meaning friends had reached out to us as we received the news of Juliette’s diagnosis.  ‘More than 90% of children with leukaemia live,’ they told us and for the previous few hours, that thought had been my salvation.

When we returned to her room, Juliette was lying with legs curled up, her back to the door.  She made the tiniest hump in the bed, and looked so vulnerable.   It was not right that she might die.  She was too young, too little, too beautiful.  It was wrong that it was her, and I could not make it me.

Steph was back and held me tight against him as I gave him the news.  I was broken by the crisis, the normal rhythms of life had evaporated. Steph however, was in the grip of practicalities. This should have been reassuring, but I was alienated.  We all needed his strength but at this moment I was unable to fathom how he had been able to worry about our other car or make plans for our dog to be fed.  I needed the whole world to acknowledge our devastation; nothing else mattered as we fought for Juliette’s life.  But by focussing on these practical details Steph’s faith in the solid was shored up, and the sanity on which his family so depended was anchored.  He could not fall apart because I had already done so.

Reluctantly, I let my mother stay with Juliette that night.  Juliette had given a pleased smile when we suggested it and though I hated to leave her, I was worried about Elodie and Pierre.  In this confusion, they needed us too.  My mother persuaded Steph to go with me so that we could begin to make sense of what was happening.

We drove home and collected Elodie and Pierre from Kate’s. With as much conviction as we could muster, we reassured Elodie that her sister was all right.  We explained that Juliette would need to be in hospital for a little while so that the doctors could give her medicine. We described Juliette’s ‘wigglies,’ and what they were used for.  Though our words seemed to comfort Elodie, these child-like explanations only amplified for me the horror of what Juliette was going to be experiencing over the coming months.

Elodie was a mature little girl for her age, and unusually empathetic.  With Juliette she was always extraordinarily patient, a master of diplomacy too when Juliette’s shorter fuse made her lose her temper.  The dynamic between them often reminded me of that between Steph and me.  Elodie would have Juliette playing games that were against her natural inclination, often involving a performance.  Usually this was dancing.  Elodie would make up a dance routine and then teach Juliette, but Juliette was unable to be serious about it for long.  Either she would get bored and refuse to co-operate or should she would rebel against her sister’s discipline and create an exaggerated dance of her own.  Elodie would be annoyed at first but more often than not, the girls would dissolve into giggles. They were opposites on the scale in most ways but, although she had become the noisier one, Juliette hero-worshipped her calmer sister.

At just six years old Elodie had to face some potentially terrifying facts, and she did so with her customary calm and circumspection.  Moreover, she had the sensitivity to try and head off our feelings of guilt for abandoning her and Pierre so we could be with Juliette.

‘We’ll be fine at Kate’s, Mummy,’ she reassured us, ‘and I’ll make sure Pierre doesn’t lose his nightnight.’  Without his nightnight, a bit of quilt from his cot bumper, her little brother could not sleep. I know she sensed that all was not quite as we said, but she had made a conscious decision to accept our version.

That evening after the children were in bed, we tried to talk. We sat grimly, holding hands and staring at each other as thoughts too frightening to express jostled in our heads.

In the morning we walked up to Elodie’s school. The head teacher, Jill, was already in class but the look on our faces was enough for another member of staff to go and fetch her.

We had decided to take Elodie out of school for the remainder of the term, if Jill agreed. My sister Dido and her children were due shortly from America to spend Christmas with us all, and my parents were ready to take Elodie and Pierre to their house in Nottinghamshire. With Juliette in hospital, at least we would know that Elodie and Pierre were happy and safe. We explained this to Jill and despite her best efforts, she broke down. She was desperate to offer us all the help she could think of, and agreed that Elodie could miss the rest of the term.

We took Elodie and Pierre to see Juliette in hospital where we learned that neither she nor my mother had slept well. The saline being flooded into Juliette’s little body combined with the effects of the anaesthetic meant she had wet the bed again, several times. Juliette was ashamed, and angry. No amount of reassurance from the nurses that it was not her fault, made her feel better. She did not greet Elodie and Pierre.

The first twenty-four hours since her diagnosis had taken a little girl and placed her in an environment alien to her. She’d had major surgery and was now connected permanently via tubes to various machines. She was only three, and the look she gave me when we walked into the room was one of reproach. I felt horrible for having left her.

Elodie was bursting with excitement to show Juliette the presents people had given us for her.  Everyone in the community was shocked at our news and wanted to show their support. Juliette lay with her back to us all, unsmiling and unresponsive. In that moment I thought the bouncy, cheeky, laughing Juliette had left us forever and that from now on, she would just be ill.  We cajoled and bent over backwards to try and make her smile, but nothing worked.

A well-meaning nurse came in at one point and said words to the effect of, ‘Come on, Juliette. There’s no need for you to be behaving like that.’ As an aside to us she explained that Juliette’s mood was probably an effect of the anaesthetic. I expect she had known hundreds of children in a similar state but all we saw was our Juliette, suffering.

When at last Juliette accepted a chocolate from behind one of the doors of her advent calendar, eating another illicit one from ‘tomorrow’ with a naughty smile, I tried to stop the tears of relief.  It was advent calendar anarchy over the next few hours. Maybe that amounted to spoiling her, but how could I not?  We were so grateful that a spark of the girl we knew had returned. The lectures about treating Juliette as a normal child so as not to make her siblings jealous and turn her into a capricious monster could wait.

That Monday morning, Juliette started chemotherapy. In the Treatment Room was a large fridge labelled with the words, ‘Danger. Cytotoxic. Chemotherapy only.’  This was where the children’s medicines were kept.  The little people on Ward C2 had substances too poisonous for the rest of us to touch, pumped straight into their bloodstreams. Allowing this to happen to Juliette felt like being persuaded to walk off a cliff, blindfolded, by a stranger you were told to trust.  We wanted to believe they would make her better but in the short term, the evidence was that they had made her ill.

A nurse had introduced us to the lady who ran the ‘home from home’ at the hospital. She promised us a room so that Steph and I could alternate nights beside Juliette. Illogically, my brain protested at the thought we might qualify for such special treatment.  She assured us that we did.

The following days were a blur. Juliette’s treatment took the form of intravenous chemo, one day on and one day off. There were lumbar punctures, steroids, anti-emetics, antibiotics and constant blood tests.

Even after a week, Juliette was showing the effects of the chemo and steroids.  Her hair had lost its shine, looking dull and colourless. Her face was puffy and stretched. She looked poisoned.  Yet through it all, other than the first two days, she still managed to sparkle.

All we could do for her was to be there.  Steph’s company had given him compassionate leave so one of us could always be with Juliette.  In her third week of treatment it was Pierre’s second birthday. He was a hundred miles away, at my parents’ house. I felt guilty, but Steph reasoned that Juliette needed us more.  In any case, surrounded by his cousins and loving grandparents was surely more fun for Pierre than the company of his anxious parents.

After his colicky start, Pierre had become a happy little boy. He smiled all the time, was very affectionate and at two he had almost passed the stage where he saw all objects as mountains to climb.  Having adventure in his heart but without the coordination to manage it safely, he regularly sported a black eye, cut forehead or grazed nose from his latest assault on the furniture. I had often wondered in my PND-fogged brain whether I was going to get a call from social services.

With two daughters and growing up without brothers I found it extraordinary having a son.  I will never forget Pierre’s pre-speech, hyperventilating excitement when we passed a building site full of bulldozers, diggers and cranes.  I didn’t teach him that.

As there were no alternatives on offer, Steph and I began our new lives as parents of a seriously ill child.  In this we had wonderful support from the hospital staff who gave us as much information as we could handle on Juliette’s treatment, but who also offered us a counsellor.

Julie, from the CLIC Sargent charity, was based at the hospital. Steph preferred not to talk, or to talk only to close friends and family. For myself, I found unloading fears to a knowledgeable stranger a huge relief.

It was Christmas even on ward C2, and there was a Christmas tree.  The first time she left her room, Juliette spotted it.  She wanted to sit close to it, and I have an image of her there in her long pink nightdress, tubes snaking from it up to the stand where her saline drip hung. With oversized mauve slippers dangling from her feet, her face broke into the biggest smile.

We held on to happy moments like these, but there was plenty to scare and depress us.  In her first days at Addenbrookes, Juliette was having a rare moment of feeling well enough to enjoy the hospital playroom, when a nurse came in to say it was time to set up her intravenous chemo.

Reluctant to break Juliette’s positive mood, I asked if it could be done in the playroom.  The nurse made a face. ‘We can’t really do that, for safety reasons,’ she said, apologetically.

‘Why?’ I asked flippantly, ‘Would it burn a hole in the lino if it were spilt?’

‘Yes. Pretty much,’ was the chilling reply.

So alien and frightening at first, it wasn’t long before we got used to life at Addenbrookes. Juliette helped. She was sanguine about the invasive attention she was receiving and in the lighter moments, she entranced the hospital staff with her twinkling eyes, jokes and infectious giggle.  She loved the attention this brought her.  Our hearts burst with pride at how well she was coping – and with pain as she endured an illness we had failed to prevent.

After a very short time, watching the electric colours of Juliette’s chemotherapy drip from bags through tubes into her body went from scary to almost commonplace. Daily chats with the doctors on their ward rounds, blood taking every morning at the hands of the tinsel festooned phlebotomists, regular pulse monitoring and blood transfusions became what was normal.

Though this all sounds grim, there were many points when Juliette had fun. She was now on busier four-bed ward. As a newly diagnosed patient, she had the privilege of a single room only until a seriously ill child needed it.  Although it was unsettling to move, I found guilty comfort in knowing she was considered healthier than another child. Juliette loved the bustle of her new ward and adored the attention of so many nurses.

A frequent, welcome visitor in that first month, my mother developed an irreverent game with her granddaughter.  Juliette was permanently attached to a saline drip that hung from a stand on wheels.  At the word of her grandmother, Juliette would climb onto the legs of the frame, hold the pole tightly and my mother would whoop, pushing her up and down the long corridor at a run, while Juliette hooted with laughter.  Of course it was dangerous and irresponsible but it was so wonderful for Juliette’s morale and therefore our own, that staff were kind enough to turn a blind eye.

We had other visitors, most of whom were a happy distraction. The ones who lifted our spirits the most were the friends who brought gossip from the world outside, and laughter. I hope it doesn’t sound ungrateful when I say that however well-meaning, it was less easy for us to cope with our friends’ sadness. We were grateful that our pain was acknowledged. Our situation was awful but we were living it constantly, and what we needed most was to be removed from it for a few minutes.

Acorn House, the home from home, was a godsend.  It was a few minutes’ walk from the ward and a deliberately medical-free environment we could escape to for moments of relief. The need for this is hard to explain unless you have experienced something similar. I would go back to Acorn House to cry, to shower the detergent smell from my skin and hair, to sleep and to talk to other parents in the communal areas. We shared our experiences, commiserated and supported, recharging our batteries, ready to face the stress of the ward again.  My sister, Dani, filled our shelf in the fridge with easy meals from Waitrose. Being able to cook and eat away from the hospital meant that when we had special visitors, there was a relaxed space to spend time with them, and unburden ourselves a little.

One treasured day nearly three weeks into her treatment, Juliette was allowed to leave the confines of the hospital for the first time and pay a visit to Acorn House with us. She’d heard so much about the place from Steph and me and from Elodie and Pierre that she was longing to see it. We dressed her very warmly to keep out the December air, and wheeled her over in a pushchair. She seemed too fragile to walk the couple of hundred metres on her own.

Acorn House was a big, friendly non-medical space that was now awash with Christmas decorations. Although Juliette was cautious at first, Elodie was brilliant at coaxing her sister out of a mood, and soon the girls had a game going in the play house.

Juliette’s hair was thinning; she was pale and puffy and her jumper bulged with the bag that held the Hickman line, but when she started to play with all the Acorn House toys alongside Elodie and Pierre we could forget about all that. So could she. There was not a uniform or a beeping machine in sight, and to see her playing in a normal environment with her brother and sister just like a normal child, was an indescribable joy.

As his sisters played house and Pierre quietly explored the bucket of cars, I was reminded of how I had watched Juliette out of the window that summer day in London.  I wanted to burn this memory onto my retina like I had that one.  How many more memories of Juliette could we count on?

Despite all the success stories, despite all the bright cheerfulness of the medical staff, the spectre of what Juliette’s illness could mean was unbearable. We had to contain our fears to stay positive for Juliette and for each other. To achieve this we focussed our attention on the minutiae from where our eyes could not examine the horizon. We were trapped in a nightmare that no morning waking could dispel.

Cancer.  More patients than ever were overcoming the disease, but it still sounded like death to me.  Our daughter had cancer of the blood.  We had this surreal, abstract concept to get used to and all the while, we were faced with the realities of Juliette’s discomfort, and the emotional cost of adapting to a life we didn’t want.

We clung to good news. Denise Williams, the consultant, came to tell me that Juliette’s latest blood results showed she was in remission. The two of us sat in the ward as Juliette played elsewhere with Steph.  The results gave me courage and I asked Denise whether she thought Juliette would live. Without a second of hesitation, she looked me in the eye and said ‘yes, I really think she’s going to live.’ I dissolved into tears of gratitude, thanking her again and again for her solid faith. It gave me the confidence to keep fighting and moving forward.

Very quickly, the routine of living amongst children with various cancers imposed itself over what we had previously considered normal. Play specialists encouraged the children to cover sick bowls with sequins, and call them hats. Mouthwash sponges for the ulcers all the children suffered from were used to apply paint in daily art projects. Using the accessories of their treatment for fun was no accident. It was to take the fear away.

The play specialists would visit children too ill for the playroom in their rooms, bringing toys or stopping by just for a chat. In this most difficult of environments, the nurses were always good-natured. Doctors lingered with each patient, chatting to them about everything, not just explaining the scary things that were happening.  After a while, they felt like friends.  There were visitors to the ward – one day the local football team, Cambridge United dropped by – and local benefactors sent mountains of sweets and presents to the children.  This special attention was a shock, until we remembered. Our little girl was on a children’s cancer ward.

It is a little shaming, but I believe it’s human nature when you’re faced with horrible circumstances that you work out whether your situation is better or worse than others.  Some of the children who were being treated alongside Juliette had inoperable tumours; they were sickly, bald and had parents who should have been without hope.  We met some inspiring people during our time on C2, who made us feel lucky.  Of course, there was anger and bitterness from some, but there was also hope enough to make the tired spirit soar.

In our first week, we met parents whose four-month-old baby had a brain tumour. Doctors told them that even with surgery he had only a 10% chance of recovery. ‘I don’t believe that’ said his feisty mother.  ‘I think statistics are nonsense, and I’m going to keep caring for him like a normal baby.’

The strength of her normal baby’s chemotherapy treatment meant that she had to wear gloves when she changed his nappy, all of which went straight to the toxic waste disposal area of the hospital.

After the month we spent at Addenbrookes, we did not see that family again.  We never asked what happened to that little boy, because at the time we simply could not risk knowing the answer.  It sounds callous, but the grip on hope for parents like us is tenuous and believing that Juliette would live was essential to every part of our daily lives. We could not bear to learn how that little baby had lost his fight.

The patients’ fridge at Addenbrookes had shelves that appeared to me like little rafts of hope.  One mother swore by the anti-oxidant properties of blueberries, while another family had entirely switched to a macrobiotic diet – anything that would give our child the edge, to be on the right side of the statistics.

As the weeks went on, we were resigned to spending Christmas in hospital.  Our lives had become punctuated by Juliette’s blood tests, results, drugs, temperature and blood pressure monitoring.  We had visits from doctors of all grades, and students too.  One doctor was doing a study on the effects of steroid drugs on growth; others just came to peer at the new leukaemia patient.  However, we were not the new people for long.  There seemed to be new cases every day, enough so that we felt like old hands after a couple of weeks.

We had more visitors. Like a breath of fresh air, my sister Dido and her family arrived from California for their scheduled Christmas visit. My aunt and uncle made a four hour journey from Norwich to spend an hour with us.  Juliette was weighed down with presents, and the cards and letters of support were incredible. Tentatively, we had started to relax, confident that Juliette’s treatment was working. Our faith in the Addenbrookes team could not have been stronger, but then we had this question from one of Juliette’s team of doctors.

‘Do you want the good news or the bad news?’

Oh God.  What bad news could we possibly bear?

‘The bad news,’ I said, automatically.

‘The bad news is that we’re going to miss you when you go home for Christmas!’  It was the 23rd December.

They prepared us for taking Juliette away from the safety of the hospital, but even so, we were worried.  What if her line site got infected?  What if we couldn’t remember which drugs she was supposed to take?  What if she became ill when we were going to be so far away from Addenbrookes?  What if we failed in our basic duty of care?

We were not confident, but they reassured us. In any case they had arranged appointments for Juliette every other day at the Queen’s Medical Centre in Nottingham near my parents over Christmas, and a return to Addenbrookes for chemo on Boxing Day.  The treatment schedule did not respect public holidays.

That Juliette was allowed out of hospital for Christmas at all when it involved a lot of extra hassle for the staff, was one of the first examples to me of how our wonderful health service makes huge efforts to minimize the pain for families like ours.  We were encouraged to make Juliette’s life as normal as possible and they were on hand to help us achieve that.

The darker side of this approach we did not explore at the time, is that Health professionals are well-placed to appreciate just how fragile your child’s grasp on life is.  With a smile, they nurture the conditions that make your time together the very best it can be.

Steph and I packed up and dressed Juliette in lots of warm layers.  As the cold air outside the hospital hit us, we exchanged a look.  We were absolutely terrified, but so thankful too that we could take Juliette away from the place on which she had been completely dependent over the past month.  As we strapped her into her car seat, she looked so tiny and vulnerable. Her white face contrasted with the pink of her warm hat, and her cheeks were even more stretched and puffy.  She looked like a patient, the bulge of her Hickman line bag evident even under all the layers.  She was tired but quietly happy, the smallest of smiles on her lips.  She was excited, but like us she seemed a little afraid.  I think we had all become institutionalised.

During the ninety minute journey, I kept looking behind to check Juliette was OK.  Eventually she went to sleep and I found myself leaning back to check her pulse.  Steph and I talked quietly, and allowed ourselves to relax into the idea of an almost normal family Christmas. Juliette had earned a reprieve.

Steph has always loved Christmas with my family.  My mother is the doyenne of large family events.  When my sisters and I were children, tight finances had meant that for a few years our family played host to foreign language students.  We had Vietnamese, South American and students of other nationalities staying in our lovely, big, but chilly Scottish house.  It was hard work for my mother but as children we loved the diverse and unusual company.  The nicer students would give us biscuits, teach us songs from their native countries and play games with us.  Always however there were huge meals to prepare, and it was a challenge my mother rose to and thrived under.

She loved these noisy and chaotic gatherings, and has always been a superb cook.  For our wedding, she prepared lunch and dinner for 150 people.  All cooked in advance of course and served by waiting staff on the day, but it was spectacular.  Christmas was like that too, though without the staff.  Lots to eat and drink, and my mother at the centre of it all, captaining the family ship amid much laughter.

When we first arrived at my parents’ house, Averham, there was the excitement of the tree to decorate.  They had all waited to do this in case Juliette was allowed out and now we were here, it was magical.  The idea of being here with Juliette had seemed an impossible dream only a couple of days before.  At first, she was distant with the other children, whether feeling fragile or just freaked out to be there after a four week stay in hospital.  It was not long though before she was joining in with Elodie and their cousin, Harry. The sight was medicine for our souls.

At five, Harry was a little younger than Elodie and a bit older than Juliette.  Born in Edinburgh while his father did another degree, he was now a blonde Californian boy. The three of them had a lovely rapport.  Harry’s little sister, Annie, was twelve days older than Pierre.  In fact, we had been visiting Dido in California when we both discovered we were carrying them.  Dido called our mother on the phone, saying, ‘Geves and I have some news.  We’re pregnant.’  It is one of the only occasions we have known her to be entirely lost for words.

It was an exaggeratedly noisy Christmas.  It seemed so important to be normal, and the effort it took to be so, showed on all of us.  We took a lot of photos.  In one of these photos Elodie, Juliette, Pierre, Harry and Annie were all wearing hats, stolen from their grandparents’ hat cupboard.  Strangely, they had all picked headwear that reflected their character in some way.  Juliette’s was a soft and sumptuous fur creation, a relic of the seventies glamour my mother had perfected.  She looked radiant, eyes shining out from underneath the fur and with colour in her cheeks for the first time in weeks.  My beautiful daughter.

We had been allowed to take Juliette away from Addenbrookes, but we were on a very short leash.  She needed a blood test every other day, and at the Queens Medical Centre we experienced a different children’s cancer ward. There were more patients and it was an older building. While the paediatric oncology ward in Cambridge was on the ground floor, in Nottingham it was on one of the higher floors of a tower block.

The staff was welcoming to Juliette, and Juliette seemed almost glad to be back in a semi-familiar medical environment. I knew how she felt.  For me it was reassuring that while the location was completely different, the language and terms were identical. We felt safe.

On Boxing Day, I was grateful for Dani’s company when she came with Juliette and me for Juliette’s long session of chemotherapy at Addenbrookes.  The three of us lay on beds in a semi-deserted ward, watching Christmas films as Juliette received her chemotherapy and afterwards, a transfusion of red blood cells.

We made it back to Essex for New Year, and were joined by my cousin Jo and her family.  Like me, Jo also has two sisters close in age, and we had spent many of our childhood holidays together. The six of us would put on plays, and get up to what we imagined was mischief. Jo and I were at St Andrews University reading French at the same time, where she rolled her older cousinly eyes at my bad behaviour.  Like me, she had married a Frenchman.  She met Sébastien when they were both studying the wine trade in France and together they had overseen the renovation of a lovely French Chateau in the Dordogne, where they now lived.

My aunt, Jo’s mother, had died of cancer ten years previously and Jo’s unconstrained rage and misery when I told her about Juliette’s diagnosis was a huge comfort.  With the best of intentions, many kind people unconsciously brushed away legitimate fears with their talk of hope and fantastic treatments.  Once in a while I longed to see the anger and disbelief I felt reflected in the words of another.  Being afraid is very lonely.

That New Year’s Eve, Jo and Seb’s children played with ours as my cousin and I talked for hours about the unfairness of life, while Steph and Seb drank Bordeaux.

Christmas: baubles and sharp thorns

Juliette was diagnosed with leukaemia just before Christmas, ten years ago.  What had been a glittering rush of normal preparations became hospital, blood tests and chemotherapy.  Nurses wore tinsel, flashing Christmas earrings and presents arrived every hour for the sick children on the ward.  For a bubbly three-year-old oblivious to to what her illness could mean this was very exciting, but for her parents the only decorations we could think about were the smiles we hung on our faces.  We were breaking up inside, but Juliette had to be protected from our horror and fear.

She made it through that Christmas, and a second one.  The following year she had left us, and we were thrown into a festive season which felt all wrong.  As the gaudy wheels whirred in a frenzy of commercial joy I felt like shouting, “Don’t you know what’s happened?  How can you all pretend that it hasn’t?”  I shopped because I needed to.  Our other children did not deserve a dark Christmas, but there were moments of torture when in a shop I would pick something up thinking, “I’ll get this for Juliette, she’d love it,” before remembering.

Gradually over the years, Christmas as with other things has become easier.  For us, as with many families who have lost children, the rituals we’ve found are what get us through the tough times.  That first Christmas I chose a beautiful new angel for the tree, but I cried so much when I got it home.  It felt like such a paltry, hollow gesture. I wanted to be able to buy presents for Juliette – to watch the face I knew so well light up, and hear her laughter. 

Finding a new angel every year has become our way of keeping Juliette as part of the family’s Christmas. Sometimes I ask our other children if they want to help me choose, but often they leave it to me.  Some years I feel Juliette poking fun at my choice.  In others I see her face in the little figure I’m holding, and know that I’ve chosen the right one.