Читать книгу Hannah’s Choice: A daughter's love for life. The mother who let her make the hardest decision of all. - Hannah Jones - Страница 6

I don’t know how I knew it was the day on which our world would fall apart. Call it a mother’s intuition, my medical training or just luck, but that day in December 1999 I knew I couldn’t listen to another doctor telling me there was nothing wrong with Hannah.

‘I want a second opinion,’ I said to the young A&E doctor standing in front of me at Worcester Hospital.

Hannah was lying on a bed between us. She was pale and listless, so quiet. Not the bubbly, chatty four-year-old I knew so well. It was about 11 p.m. and she’d woken up a couple of hours before, crying and complaining of a tummy ache.

The doctor looked at me as exasperation washed across his face.

‘You just need to give her some Calpol,’ he said.

‘I already have,’ I lied.

I didn’t want to be dismissed with paracetamol. I wasn’t simply another over-protective mother. Someone had to listen to me. Something was terribly wrong. I knew it.

‘I think you should take her home and see how she is in the morning,’ the doctor replied slowly. ‘You can always see the GP if she’s still not feeling well tomorrow.’

I stared at the man, wanting to fly at him and scream.

‘I want a second opinion,’ I said in a low voice, trying to keep my rage under control.

‘Well, I’m afraid there’s no paediatric consultant on duty tonight. You’ll have to take her to Birmingham or Hereford to be seen.’

‘In an ambulance?’

‘No.’

I didn’t have time to argue. Scooping up Hannah in my arms, I ran out of A&E towards the car. Putting her into her seat, I ran around the car, got in and started the engine. Hereford was closer – 45 minutes’ drive away.

‘My tummy hurts, Mummy,’ Hannah moaned.

‘I know, darling, and we’re going to make it better,’ I said softly.

Hannah shut her eyes as I started driving. The minutes slid by as I turned over everything again and again. Why wouldn’t the doctor listen to me? Why hadn’t I done something more before now? Hannah hadn’t been well for a few weeks but the GP had told me it was just a virus and I had listened as I told myself she was tired at the end of her first term at school. When she hadn’t perked up, I’d gone back to the GP again and was told the same thing – she had one of those unspecific childhood bugs that every under-five gets and she’d soon shake it off.

So when Hannah had refused to eat on a visit to see my great aunt Kitty, I’d told her off. When bruises had appeared on the tops of her feet, I’d explained them away by a bang she’d got when she opened a cupboard door. I told myself I was being over-indulgent – the kind of mother who won’t listen to good medical advice when she’s given it. The kind of mother I didn’t want to be. But what kind of mother was I now? I’d known deep down that something was wrong and hadn’t trusted my own judgement. Now I knew I must.

Fear turned inside me as I drove and pressed my accelerator foot closer to the floor. Hedges and trees rushed by in the blackness as we neared Hereford.

‘Nearly there, Han,’ I said in the singsong voice mothers use to calm fear, anger or anything in between.

But Hannah did not reply and I turned to glance at her beside me. She looked as if she was sleeping. Reaching across, I grabbed her leg and shook it.

‘Han?’ I said. ‘Han?’

She didn’t open her eyes. I pushed my foot down harder, trying to stave off a rush of panic. Was she breathing? Should I stop to check? No. I didn’t have time. I had to get her to hospital. They could do more for her there than I could.

Driving into the entrance of Hereford Hospital, I headed for the children’s ward. I’d done some nursing shifts there before so I knew where it was. It was quicker than trying to find A&E. Hannah was limp in my arms as I pulled her out of the car. Quick, quick. Hurry. Let me in.

I hit the doorbell to the unit but nothing happened and I stared around me, ready to start screaming. But suddenly the door opened and I dashed inside. Running along the corridor, I could feel Hannah lying in my arms. My baby. My precious girl.

Flying towards the children’s ward, I hit the bell on another door and waited for a voice to crackle out of the intercom. It seemed like for ever until it opened and I ran into a long corridor.

‘I need help,’ I pleaded as I reached the nursing station. ‘Please. My daughter is unconscious.’

Nurses burst into life in front of me and Hannah was taken out of my arms. I followed as she was carried into a room. Very pale, her breathing was fast and shallow as a doctor started examining her. Please, please let her be OK. Make her well again.

‘We’ll need to put a line up,’ the doctor said as the nurses peeled off the top of Hannah’s cream all-in-one sleep suit.

I stared in horror at her tiny body. It was covered in tiny red marks – more appearing with each second – livid spots popping under her skin as if an invisible person was pricking her. The doctor pressed a needle into her right arm to take some blood.

‘We’ll send this straight off to the lab,’ he said as he slipped the syringe into a plastic bag.

Hannah was still semi-conscious as she was put onto a saline drip. Now all we could do was wait for the blood test results. Time disappeared as I sat by her bed waiting. She looked so tiny – her blonde hair clinging to her head and her breathing still shallow and rapid. Her skin was so pale, it looked almost grey. I wanted to do something. Surely I could? I was her mother, the one person who would always protect her. But even as I tried telling myself this was some everyday, run-of-the-mill illness, I felt the spark of fear which lies inside every mother from the day their first child is born uncurl itself inside me.

‘Mrs Jones?’ a voice said. ‘The doctor wants to speak to you.’

I was taken into a room where the doctor was waiting with a nurse. She walked towards me as if to put her arm around my shoulders but stopped as I stared at her. I knew what this meant. I’d seen it a lot during twelve years of nursing. But I’d always been on the other side before – one of the people waiting to gently break bad news to a stunned relative.

I sat down opposite the doctor.

‘We’ve had the results back,’ he said. ‘I’m afraid Hannah is very poorly. Do you have any idea what is wrong with her?’

I looked at him. I’d been going over it in my mind and knew – the bruising, tiredness, loss of appetite. I should have realised before now.

‘I think so,’ I replied.

The doctor looked at me.

‘Hannah has tummy ache because she’s bleeding into her stomach and is now beginning to bleed everywhere. We need to work quickly to save her life now.’

I stayed silent as I listened.

‘This is very serious, Mrs Jones,’ the doctor continued softly. ‘Hannah is a very sick little girl. We think she has leukaemia.’

It was quiet on the ward, past midnight, as I opened my eyes and looked at Hannah. A small light above her bed threw soft beams and shadows across it. Standing up, I tucked her yellow knitted blanket around her. We’d brought it from home – something familiar in all that was so new.

Turning around, I stared at the plastic chair which I’d earlier folded out flat before wrapping a hospital sheet and blanket around it. This was my bed now, but I knew I wouldn’t be able to switch off as I lay down and heard the hushed sounds of the hospital at night – the clip of nurses’ footsteps, the rumble of trolley wheels and the soft beeps made by machines. I felt as I had in the first few weeks after becoming a mother – too scared to fall properly asleep as I listened to Hannah breathing. Like all new mothers, mine had been a waking sleep all those years ago until I’d learned to trust the fact that she was safe. Now such certainty was gone.

Hours after arriving at Hereford, we’d been transferred to Birmingham Children’s Hospital and already the map of our world was unrecognisable. Gone were pre-school and nursery pick-ups, bath times and stories before bed. Instead there were lumbar punctures and central lines, HB levels and platelets.

We’d been plunged into our new world during our first meeting with Hannah’s oncology consultant, Dr Williams. Young, smiling and comfortably rounded, he’d told us that she had probable acute myeloid leukaemia – an aggressive and rarer form of the blood cancer. From that moment on there was a flurry of activity, questions and tests. This morning Hannah had gone down to the operating rooms to be anaesthetised for a lumbar puncture to confirm the diagnosis and identify the specific type of leukaemia by drawing spinal fluid to test for cancer cells. A central line had also been inserted – an intravenous catheter which snaked through her chest wall and into her jugular vein ready to deliver chemotherapy drugs straight to her heart.

Andrew and I had sat quietly as Mr Williams explained AML to us. In healthy adults and children, bone marrow produces red blood cells to carry oxygen around the body, white blood cells to fight infection and platelets to knit blood together and control bleeding. But in Hannah this system had gone out of control, like a rollercoaster crashing off its tracks into the unknown. Deep within the core of her bones, her marrow was over-producing imperfect cells. It meant that healthy blood was not being made which was why Hannah had started bleeding internally. Without treatment she would certainly die. With it, she stood a chance.

For a moment fear had engulfed me as the doctor talked – a bitter, clenching terror that filled my gut. But I’d pushed it down as I listened to every word he said, knowing I must keep myself calm as we prepared to fight for Hannah’s life. Working for many years at the extreme end of nursing – intensive care and cardiac transplant wards, major injuries units and paediatric ICU transfer – had taught me how to do this. In the rush and panic of acute medicine I’d learned to keep still in the eye of a storm. Sick and infirm, young and fit, death was a random enemy which didn’t make allowances as it took lives. But it was only now as it tried to take my own child that I knew what fear really tasted like.

It had all felt unreal during those first anxious hours in Hereford Hospital as we waited to be transferred to Birmingham by blue-light ambulance. After the doctor had spoken to me, I’d phoned Andrew and he’d arrived desperate for news, tears wet on his cheeks as both of us tried to take in what was happening. Until then we’d had an ordinary life: Andrew working as an auditor and me doing twenty hours a week as a junior sister on a coronary care unit in Worcester, juggling my shifts around our three children, babysitters and nursery. We lived in a new house on a little estate and went on holiday once a year. It was a busy, run-of-the-mill life until we stepped out of the lift into the long corridor leading through Birmingham’s paediatric oncology unit for the first time and I knew nothing would ever be the same again.

Hannah was lying on a stretcher and I looked up to see a little girl walking towards us. She must have been about ten and was stick thin – a pair of shorts hanging from her hips and a white T-shirt dropping in folds around her body, her head completely bald. She looked like a ghost as she pushed a drip stand, and my breath caught as I stared at her. Just the day before I’d been planning for Christmas because it was only a week away. What toys to buy? What food to cook? Did I have enough to fill the children’s stockings? Did I have too much? But now this world had disappeared completely and it had taken just one word to shatter it. Four syllables. Leu-kae-mi-a.

As Mr Williams talked us through Hannah’s diagnosis and treatment, he’d shown us a red file containing pages of tiny typed words listing all the different forms of chemotherapy and their side effects. Hannah’s leukaemia would be treated by six rounds of chemo which would last about a month each and all follow the same pattern – after an initial burst of intensive drugs over several days, Hannah would continue on a lighter cocktail of medication for another ten before being given a ‘rest’ of about another ten days to allow her body to recover from the onslaught. It was like a war: a period of intense battle followed by a retreat and regrouping before the fighting began again. All we could do was wait to see if it would be enough to save Hannah’s life.

‘We hope Hannah will quickly go into remission,’ Mr Williams had told us. ‘But even if she does she will have to complete all six chemo courses to give her the best possible chance of long-term remission.’

Andrew and I had listened as Mr Williams warned us of the possible side effects the powerful chemo drugs could trigger because they would attack the healthy fast-growing cells in Hannah’s skin and digestive tract as well as the cancerous ones. The chemo might cause anything from hair loss and nausea to skin changes and tiredness. Hannah’s immune system would be so depleted by the highly toxic drugs that any tiny infection could be serious.

There was also the possibility of more extreme side effects like an increased risk of thrombosis or heart damage. But they were remote – the stuff of warnings listed on an aeroplane safety card which you barely glance at as you settle back in your seat. We didn’t have a choice. We had to fight the enemy that was here and now. If Hannah didn’t have the drugs, we would certainly lose her.

‘I don’t feel well, Mummy,’ she’d cried when she’d woken up after Andrew and I had returned to her bedside. ‘My tummy hurts.’

She’d hardly been awake since the night before. Too ill and drowsy to know what was happening.

‘We’re in hospital, darling,’ I said softly as I bent towards her. ‘You’re poorly.’

She stared at me.

‘There are bugs in your blood and the doctors are going to give you special medicines to fight them.’

Hannah looked at Andrew and me, her eyes huge in her white face.

‘Will they taste nice?’ she asked.

‘These are special medicines which you don’t have to swallow,’ I replied.

‘Will they make me better?’

I paused for a moment. I had a choice now: lace the truth with uncertain hopes or speak it gently but honestly on this, my first step into the unknown with my daughter. Hannah had to trust me completely. I couldn’t start lying to her now.

‘We don’t know for sure, but we hope so, Han.’

Andrew and I looked at each other. There was nothing more to say.

As soon as Hannah started chemotherapy, it quickly became clear just how much the treatment was going to affect her. The chemotherapy drugs had to be administered day and night through two bags labelled with words like ‘Toxic’ which hung from drip stands beside her. Each ran in turn down the central line into Hannah’s heart, which was washed out with saline whenever the drugs were switched to ensure they did not mix. Within days, she had started passing blood clots or vomiting them up as the skin on her inner digestive tract disintegrated.

It is one thing knowing your child must have life-saving treatment but another to watch them have it. The cries of children too young to understand what was happening cut razor-sharp through me and at nights the buzz of the day disappeared and soft sobs filled the silence. But the only time Hannah cried out was when the drips and lines going into her veins caught as they were moved. Otherwise she lay still and her silence was almost worse than screams. It was as if she was too sick to even make a sound, too weak to express her pain in any way, and I wished I could climb inside her mind and know what she was thinking.

Time disappeared. I didn’t think of the next chemo cycle, next month or even next week. I knew Oli and Lucy were being looked after at home by Andrew and his parents so I focused completely on Hannah. My days were lived waiting for her latest blood results: white and red blood cell counts, platelet levels and HB ratings. Leucocytes, basophils, eosinophils, creatinine levels…the list of blood cells and other physiological markers was endless. Each morning a blood sample was taken, and after the results came back soon after lunch I’d write down the figures in a pocket-sized book – lines of numbers running like Chinese shupai down the page which told me about the minutest details of my child’s fight with the disease inside her.

The tiny figures became my talismen and I’d wait anxiously each day until the small hand hit the number two on my watch face and it was time to walk to the nurses’ station to ask for news.

‘It must be busy in the labs today,’ someone would smile. ‘They’ll be here soon.’

Pushing down my impatience, I’d walk back to Hannah’s bed. But in my desperation for news I wasn’t any different from every other mum on the ward who also pored over the figures when they got them. Did their child have an infection? Was their red blood count coming back up? Or their white count going down? Some couldn’t decipher the list of intricate numbers and asked me to explain after realising I could help. I understood why they wanted to know what the endless figures meant: they were the one piece of fact we could hold onto amid so much uncertainty, and understanding the numbers felt like some small practical way to help our child at a time when there was so little else we could do.

Otherwise I spent hours sitting beside Hannah, longing to get onto her bed and lie beside her like other parents did with their children but unable to because she didn’t want to be touched. Hannah’s senses were so heightened that her skin was incredibly sensitive and I found it hard not to physically reassure her. I wanted to cradle her just as I had when she was a baby, feel her weight against me and soothe her. But Hannah did not want to be hugged and she did not cry out for me either. She lay in a cocoon of silence, as if willing herself to live, while I sat within arm’s reach, close enough for her to feel my presence. The hours slipped by with the television on low as she slept and when she woke I would colour in a picture so that she could watch, or read a story for her to listen to.

Too ill to eat, Hannah was fed by a high-calorie feed which dripped slowly into her nasogastric tube from another bag on a drip stand beside the bed. Thick and sticky, the feed had to be covered in brown paper to protect it from the sun because light could alter its delicate chemical balance and we quickly got used to this strange kind of nourishment, just as we did the rest of our new life. After that first shocking sight of the little girl walking towards me, it soon became normal to see children with no hair; after a few nights in the chair beside Hannah’s bed I knew other parents in the ward were lying awake just like me and occasionally I could hear their muffled sobs. We smiled at each other during the day and silently accepted each other’s grief by night.

Life on the unit wasn’t just about sadness – there was hope and light too. Doctors walked around in white coats splattered with water shot from pistols by the children who were well enough to play, and the nurses, who worked harder than any I’d ever seen, were endlessly cheerful. Christmas also worked its magic on the ward just as surely as it did in any other place filled with children. Decorations were strung across the walls, nurses played carols on the radio and Father Christmas visited the children each day to hand out presents. If Hannah was sleeping when he came, she’d wake to see a Barbie car or a colouring book, a doll or a fairy wand, in the stack of presents which slowly piled up beside her bed.

I liked the fact that the doctors who clustered around her each morning to assess her progress – the consultant Dr Williams, a registrar, senior and junior house officers and various medical students – were followed by a man with a red jacket and a huge smile. Just like every other four-year-old, Hannah loved Father Christmas, and although she was too sick to express her excitement I knew she enjoyed his visits each day.

He was something comfortingly familiar – just like the duvet, sheets and pillows Andrew had brought from home after Hannah had told me the hospital ones were too scratchy. To minimise the risk of infection on a ward full of children who were so weak, I had to wash the linen each day to stop bugs breeding and soon realised we needed more supplies to keep up with the constant flow of clean laundry. But I knew the familiar smell of our washing powder would comfort Hannah, just as Father Christmas would – a bright spot in the day, a few moments for her to forget.

But after nearly a week in hospital a nurse came to deliver bad news just as Andrew arrived with Oli and Lucy.

‘There won’t be a visit from you-know-who this afternoon,’ she said in a low voice. ‘There’s no one to do it, unfortunately.’

I looked at Andrew – with his big belly and smiling eyes he’d be perfect for the job.

‘Will the costume fit me?’ he asked as he looked at the nurse.

‘Size nine boots OK?’

‘I’ll squeeze into them.’

The nurse took Andrew off to get dressed as I turned to Oli and Lucy and breathed in their comforting smell while I cuddled them – Oli, a toddler of nearly three, and Lucy, a bouncing baby of fifteen months. I had missed them so much, and seeing the energy and life shining out of them was like seeing shards of light glittering across water – something everyday suddenly become magical.

‘Where’s Daddy?’ Oli asked as he looked up from the colouring book he’d found.

‘He’s gone to the car to get something. He won’t be long. Shall we draw a picture for him?’

Oli picked up some crayons as I jiggled Lucy, happy to feel her in my arms again, and waited for Andrew to come onto the ward. But as I watched him walk up to the first bed I suddenly realised that I might have made a mistake. Would Hannah recognise her father? She was an intelligent child, advanced beyond her years in many ways after being diagnosed with dyspraxia when she was two and a half. The condition was a bit like dyslexia but affected movement and coordination. It meant that Hannah had been late learning to walk and dress herself, but her language, as if in compensation, had developed quickly and she was also very sensitive to other people’s emotions. Hannah could say ‘octopus’ before her first birthday and have long conversations about the plants in the garden by the time she was four. When my granny had fallen over one day while they were out for a walk she’d even calmly insisted to a passer-by that she could look after her.

But it was too late to do anything now because Andrew was walking up to Hannah’s bed and all I could do was hope that she didn’t recognise him as he chuckled, ‘Ho, ho, ho’.

‘Father Christmas!’ Oli squealed as he jumped up.

I got up with Lucy as Andrew sat down on the chair beside Hannah’s bed and Oli climbed onto his knee, listing the presents he wanted while Lucy sat in my arms, refusing to go anywhere near the strange man in red. When Andrew had finished with Oli, he turned to Hannah and held out his left hand towards her. She looked at him silently and I held my breath.

Very slowly, she lifted her right arm and pushed her hand into the space between the bed and chair where her father’s was waiting for hers. Their fingers met in mid-air.

‘You’re being a very good little girl,’ Andrew said softly.

Hannah’s mouth curved into a tiny smile as she looked at Father Christmas and I knew this one piece of magic was still safe for her.

It was New Year’s Eve 1999 – millennium night – and after two weeks in hospital the intensive phase of Hannah’s first cycle of chemotherapy drugs had ended a few days before. But while I could hear people getting ready to celebrate outside on the streets of Birmingham, inside the hospital everything was quiet as Hannah lay almost unconscious. Two mornings ago the nurses had noticed her vital statistics weren’t normal when they did her usual observations – her pulse was rising, her blood pressure and oxygen saturation were dropping. The doctors knew immediately that Hannah’s heart was struggling and a cardiologist who’d seen her had told me she might be suffering a temporary side effect of the chemo. She’d been put on new medication but Hannah was still dangerously ill and was now on morphine to control her pain.

As the soft thud of music from outside weaved through our hushed world, I thought of all the people getting ready to see in midnight and wished Hannah could be among them, ruddy faced and smiling. Then I thought of Andrew and the children at home and sadness filled me that we wouldn’t be celebrating this milestone together as a family. Instead we were far apart and Hannah was lying still on the bed with her eyes closed, barely conscious, oblivious to the nasal canula running underneath her nose to give her oxygen, the feeding tube running up it or the central line attached to her chest. Three sticky electrode pads were attached to a heart monitor which beeped softly and a SATS probe on her finger constantly checked her oxygen levels.

All I could do was pray as I sat beside her, willing her back to consciousness. I felt angry and disappointed. How could this be happening to Hannah when she already had so much else to fight? After the hustle and bustle, the rush of emergency when we had first arrived in hospital, the silence now felt overwhelming and all the questions I had been asked since that day rolled in a constant stream through my mind.

There had been so many of them. Did I breastfeed? What type of bottled milk did I use? Did I warm it in the microwave? None are proven links to leukaemia, but as I searched for a reason why Hannah was now even sicker I focused on the questions I’d been asked and why. Surely I should have been able to stop the unseen enemy which had sneaked into our life? I must have made some mistake and allowed it in. Hannah was my child. My job was to protect her.

The questions almost consumed me – my mind going back and forth as I looked back on our life and tried to pinpoint where I’d gone wrong. I remembered how I’d only breastfed Hannah for a couple of weeks after she was born because I’d gone back to work. I hadn’t had a choice about it, but now I wondered if I’d harmed her in some unthinking way at the very beginning of her life.

I’d longed to be a mother when I’d met Andrew eight years before. I was twenty-five and knew I was ready to fall in love and start my own family after returning from a year travelling in Australia. I’d been brought up by my grandmother after my mother had died when I was five, and although my childhood had been strict but loving, the loss had implanted in me a need to create the bustling family life I hadn’t had. My childhood was one of such stillness and routine that I craved a big, messy family full of life and laughter.

I’d met Andrew in a village pub where he’d stood out a mile in his suit. Quiet and kind, he was a big man who made me feel safe and when I got home after our first date, I told my grandmother I was going to marry him – even if he didn’t know it yet. I proposed four months later but Andrew refused because it was too soon and I was being typically impetuous. So we waited another year to get engaged and I was over the moon when we started trying for a baby.

But two years had passed and I hadn’t fallen pregnant. No one could explain why, and I felt hopelessness seep into me for the first time in my life as the months turned into years. Feeling more and more overwhelmed, I gave up my job and stayed in bed for weeks until realising I couldn’t lie there forever. So I forced myself back out into the world, where I got a job on a production line at a cake factory – repetitive, undemanding work that I didn’t need to worry about – and told myself I would fall pregnant when the time was right. Two months later I did, and was overjoyed. My family was finally starting and I knew I’d do anything to protect it.

So when Andrew had been made redundant weeks before Hannah was born I had found a job to support us and returned to work when she was just three and a half weeks old. But leaving her was even worse than I had anticipated because I was soon sent to a conference in Canada by the pharmaceutical company I was working for. I ached every day for Hannah, who was being looked after by Andrew and my grandmother, and was overjoyed when he found a new job. It meant I could go home again and I’d stayed there ever since – first with Hannah, then Oli and Lucy – concentrating on our family life and working part-time as a nurse to help pay the bills.

But now, as I thought back to those few weeks of her life and tried to make sense of what was happening, I wondered if leaving Hannah was just the first mistake I’d made without even knowing it.

The world closed down to just Hannah and me – she and I in a silent bubble together as we fought her illness, travelling a path that seemed to get darker and darker. Three days into the New Year she was transferred into the high dependency unit – a halfway house between the oncology wards and intensive care.

Semi-conscious and still on morphine, we lived in half-darkness, blinds closed and wave sounds playing softly to soothe Hannah. Various different types of therapy were offered to children by aromatherapists and reflexologists who came onto the ward. But all they could do for Hannah was give her crystals – pebble-smooth stones that we put in the palms of her hands as she lay in bed hardly moving.

We were closer to the edge of darkness than ever before, and for the first time the word ‘die’ whispered around the edges of my thoughts. Before now I’d refused to let myself think it, pushed it out as I concentrated on Hannah’s treatment. But now I knew I couldn’t ignore it any longer as she lay silently. No one knew for sure yet why Hannah had so suddenly weakened and, desperate to try and make some sense of the chaos inside me, I had asked for a priest to come and perform the Anointing of the Sick – prayers said for those who are dangerously ill. I had been brought up with a strong Catholic faith and Hannah had always enjoyed church. She’d also liked the nuns who visited the children’s ward so much that she’d ask where they were if we hadn’t seen them for a few days. Hannah liked routine and they always came on time before reading the same prayers, exuding a quiet stillness which calmed her.

Now I watched the priest as he softly traced the sign of the cross on Hannah’s forehead.

‘Through this holy anointing, may the Lord in his love and mercy help you with the grace of the Holy Spirit,’ he said softly.

Hannah did not move or speak but her eyes were open as she watched. The familiar words and phrases of the prayers felt soothing – just as knowing other people were praying for us was. When Hannah had first been admitted to hospital, my great aunt Kitty, who had once been a nun, had contacted all the churches she knew and by now hundreds of people were praying for Hannah. It comforted me to know that we were not alone.

After the priest gave me communion and left, I sat down again, lost in thought as Hannah slept. Ever since becoming an adult, I’d been making plans and being busy – first with my career, then meeting Andrew, next came buying a home and finally starting our family. Now I had three children under five to keep me constantly busy and I hurled myself through the hours each day, waiting for the next child’s cry when they fell over or a frustrated howl as they couldn’t complete a task.

But now for the first time ever there was no shift to start at work, cleaning to do, food shopping to get or another child to calm. All I could do was concentrate on tiny things: the feel of Hannah’s right hand enclosed in my left one as it lay limply on the bed. It felt so small, as fragile as a shell hurled across a windswept beach, and I focused on the feel of it in mine – the one fixed point in a landscape which seemed to change almost by the hour.

It isn’t just emotional certainties you lose when your child falls sick and your world spins off its axis, it is practical ones too – the thousand tiny tasks which make up the physically demanding job of being a mother. Of course you willingly hand over their care to the doctors and nurses trying to save their life. But in doing so, the daily throwaway acts which have made up your life ever since your child came into it are suddenly no longer yours and you realise, for perhaps the first time, that these are the things which make you a mother – loading a dishwasher, wiping a face or turning book pages, each one giving you a purpose and reason which you feel lost without.

I clung to the little things I could still do – checking Hannah’s feeding tubes, smoothing her sheets or wiping her hands clean of the blood spots running off the drips – but knew it wasn’t practical care she needed from me any more. Hannah and I had moved beyond an everyday world of yoghurt pots and finger painting, cut knees and spilt drinks. We’d fallen off the map into the lands where dragons lay.

But as I sat with her, I realised that I must conquer my fears if I was to be what I hoped for Hannah. I had to stop looking back at the past and searching for a reason where there was none. She needed my courage, reassurance and strength to draw on more than ever now – a fixed point in all the uncertainty. I could not dwell on making sense of the past or controlling the uncertain future. I must live in the moment, finding strength in it and living it with Hannah, knowing it was precious minute by minute, hour by hour and day by day.

I had always been so busy focusing on goals and the next plan. Upgrading cars, booking holidays, finding schools – like many people I’d been preoccupied with a future that was just beyond my reach, hardly taking any notice of the moment I was in. But as Hannah’s life hung in the balance I finally saw what I could lose if I wasted the moment. Each one was precious and I wanted her to feel loved in them all.

Hannah herself was helping me to see this. Ever since she’d fallen ill she had quietly accepted what was happening, and her calmness had humbled me. She hadn’t questioned the drugs or railed against the endless tests. She hadn’t complained when she was in pain or screamed at the injustice of it all. She had simply submitted herself to what was happening and in doing so had guided me as much as I had guided her as we took uncertain steps through our new world. I knew that Hannah might die and had to accept the possibility, however much I didn’t want to. But the strength she needed from me would not come from looking back or forward. I must live in the moment with her – cling to each one and treasure it. As I sat with Hannah, I knew this was a lesson she was helping me to learn. But what I did not know then was that it would be just the first of many.