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 7

It was Dad’s birthday a few days ago and we went out for a meal at a pub to celebrate last night. Mum and Dad, Oli, Lucy, Phoebe and me went as well as Grandma and Granddad, my Uncle Nigel, Auntie Serena and my cousins Katie, who is ten, and Toby, who’s a bit younger than Phoebe. Becky, our friend who used to live over the road from us, also came with her mum Lindy and sister Abby. We all gave Dad his presents when we got to the pub and I’d made him a card using a craft kit which I’d covered in hearts and flowers. I also got him a tie and some chocolates because he loves those.

I got to dress up especially to go out because earlier this week I went into town with £40 that I’d saved up from my pocket money. I don’t often look around the shops but I was really looking forward to going and seeing what there was. I’m awful at making up my mind, though, so I went from shop to shop before going back to the first place to buy the first thing I saw. I always do that because I have to be sure that what I think I like is what I really want. So when I was finally certain, I bought some gold sandals I’d seen in the first shop. It’s still only April and my feet might get a bit cold when I wear them but they’re really nice. I’d like to have heels but can only wear flat shoes because my balance isn’t good enough for high ones. Lucy has got some platforms but they make me fall over.

Lucy and I were so excited about going out for Dad’s birthday that we started getting ready yesterday afternoon. We’ve both got makeup and so I did hers before painting her nails. Then she did my toes but I did my fingers because she makes them too messy. Mum doesn’t usually like us wearing makeup but we’re allowed to on special occasions. The trouble was that we were ready by 3 p.m. and so Mum sent me to bed to have a rest. She said I’d be too tired if I didn’t sleep and I knew she was right, but it was still boring.

I got out of bed just before we left and had roast chicken, chips, peas and a knickerbocker glory at the pub. Then we sang ‘Happy Birthday’ to Dad as a waitress brought his pudding with a candle in it. That was when the fun really started because some of our friends were on a big table behind us. They’re called Tina and Marco and they own an equestrian centre near our house where Lucy and Mum go riding sometimes.

Everything was normal until suddenly a rolled-up napkin landed on the table in front of Lucy and me. We looked around and Marco was laughing, so we lobbed one back. That was it. Marco threw another napkin, Mum chucked one back at him and then Marco flicked a pea which flew over my head and landed on the table. Lucy and I were really laughing by now as I threw a piece of bread. Then suddenly Tina, her daughter Emma and another little girl I didn’t know all joined in. Everyone was at it until Dad got cross and told Lucy and me to stop.

‘You should know better, Hannah,’ Dad said, and I knew he was angry because the people who own the pub are his friends.

Mum started clearing up bits of napkin and bread while Dad stomped off back to the car. But instead of feeling bad, I felt annoyed because I was the one getting all the blame even though it wasn’t all my fault. That always happens. Lucy and I can be nutty when we’re together, and once when Dad sent us to our bedrooms we hid in hers and decided that we were going to put Mum’s knickers on our head, bang all the saucepans together and do karaoke so loud that Dad couldn’t hear the TV. We didn’t do any of it in the end but I’m sure I’d have got the blame if we had because I’m the oldest. It really annoys me.

So I was feeling angry until I got in the car, and Dad was quiet. Then I started feeling bad because I realised that I’d ruined his party. I felt worse and worse until we got home and I went to bed which was where Mum found me crying when she came in to say goodnight.

‘I’ve messed everything up,’ I told her. ‘And I’ve been told off twice. I know when I’ve ruined things.’

(I’d actually only been told off once by Dad, but I thought Mum was going to as well when she came in to see me so I added that in.) But then Mum told me not to worry and that Dad was fine – everything had been cleared up and no harm had been done – which is when I got angry again. I knew Mum was trying to make me feel not too bad, which was nice of her, but everyone has to feel sorry sometimes and so do I. It annoys me when people treat me differently and that’s why I didn’t like Mum doing it because one of the best things about my family is that I’m normal to them which makes up for all the people who give me the Chitty Chitty Bang Bang look. Remember how scared the baroness was when the children took over her castle? How she screamed at the sight of them? Well, that’s how some people look at me and it’s the worst – worse even than when Dad gets a face like thunder if we interrupt his rugby game on TV – and the reason I hate it is because I know the person giving it to me doesn’t see me as a normal teenager.

Now I know I’m not exactly average: I’m thirteen and I’ve been in and out of hospital all my life. But the Chitty Chitty Bang Bang look tells me I’m abnormal, and while I know I’m a bit different I’m not a total weirdo. That’s why I like my mates so much because they never look at me like that, and that’s why I got so angry when Mum tried to make me feel better because it made me feel like it does when a teacher gives out homework at school before saying to me: ‘Do as much as you can.’ They usually say it quietly but even if everyone has left the class I reckon people are still in the corridor so they can hear. When a teacher says that I’m like, ‘Whatever! I can’t run a race but I can do my schoolwork.’ (Actually, I don’t say that but I shout it in my head.)

It’s not that I want to do homework or anything. In fact, I hated homework from the moment I started going to school when I was nearly ten. I had not been to school since I was sick as a little girl, and me and homework didn’t get on because when I got home it was dinner time, TV and bed. There was no time for homework and I don’t understand why kids have to do it anyway because we’re at school for more than half the day which should be enough. But even though I hate it, I hate it more when a teacher makes out that I don’t have to do it because I don’t want to be treated any differently to anyone else.

So I was still angry when Mum left my bedroom and Dad came in to say goodnight. But then he told me he’d had a nice time and I promised I wouldn’t throw napkins again when we went out, so I felt better. And I know it’s good that Mum and Dad tell me off even though it’s bad, if you see what I mean. It shows that they’re not going to tiptoe around me like some people do. It’s always been that way, and although I can’t remember much about being in hospital with leukaemia Mum has told me that she even got cross with me back then because I kicked a doctor. I couldn’t believe I’d done that! But she’s right to get angry sometimes because if people were nice to me all the time I’d have them wrapped around my little finger. I’d be able to do exactly what I want and there have to be rules otherwise I wouldn’t get anywhere. Things would also fall apart in our house because there are four kids here.

It’s a bit like Wind in the Willows when Badger tries to get Toad out of his obsession with cars. Toad is doing all sorts of stupid things and Badger tells him it’s got to stop. But Toad doesn’t listen so they lock him up in his room and he climbs out of the window, escapes and ends up in prison. It’s not until near the end of the book that he realises Badger was right and he was wrong.

The problem is that Toad doesn’t have any discipline, and look where he ends up. He has to learn that there are different kinds of discipline too: the bigger one that stops you from chucking napkins around because other people will get angry and the smaller one that stops you from doing things which aren’t good for you. I had to learn that one when I first came out of hospital after saying no to a heart transplant because while I was in bed most of the time at first, my energy got bigger and bigger as I got stronger. But then I realised that if I did too much I’d feel ill again, so I had to learn not to even though I wanted to go mad. I had to save my energy so I could do stuff later like wind Phoebe up otherwise my blood pressure would drop and I’d see funny lights in front of my eyes.

It was really hard because sometimes I wanted to get up so much that I almost had to ask Mum to pin me down. But eventually I taught myself to stay still even though being bored and tired is the worst thing in the world for me. Being bored and tired is worse than salmon, swordfish, prawns in mayonnaise, my computer crashing or even getting cold when I go outside and knowing I have to go back in again because I’ve had it.

Being bored and tired is worse than all of those, but I’ve had to learn that I must lie down until the tiredness goes away because that’s the only way I’m going to feel better, even if it takes days. That’s why discipline is important, that’s what Toad didn’t learn until it was almost too late and that’s why I’m glad Dad told me off last night.

If he didn’t do it sometimes then I’d run rings around him and Mum like I’ve seen some children do in hospital. I knew one girl who refused to eat anything except crisps and I realised that it’s easy to get spoiled if you’re sick and I’m glad I haven’t been. My mum and dad have made me happy but I don’t think I’m a spoiled child. Getting told off occasionally makes me feel normal, and I like that. It’s really important.

‘I don’t want any more medicine,’ Hannah whispered as I bent towards her.

‘You must, Han. It will make you better.’

‘I don’t want it,’ she said with a sob. ‘I’m tired.’

‘I know, Han, but soon you’ll have had enough medicines and then you’ll be able to play again.’

Hannah’s eyes were uncertain as she looked at me.

‘Would you like me to read you a story?’ I asked softly.

‘No.’

‘Are you sure?’

‘Yes. I’m busy.’

‘Doing what, Han?’

‘Fighting all the bugs.’

Hannah had regained consciousness soon after New Year, and days later we’d learned that she had gone into remission. It was wonderful news because it meant there were no cancer cells in her blood. But remission isn’t a cure and in a way there’s no such thing when it comes to the unpredictable foe that is cancer. Like every other patient, it was simply a question of time for Hannah – five years of remission was the benchmark of true hope, five years before we could believe with any certainty that she was really well – and even though her remission was a good start, we could not draw quiet confidence from it because the problems with Hannah’s heart had still not been solved. In fact, they had worsened during the second chemo cycle and were only just being controlled by medication as the doctors tried to decide what was happening.

They knew for sure that a virus wasn’t causing the problem and had adjusted Hannah’s medications to keep her stable. But she had developed septicaemia which was putting extra pressure on her heart and still needed to complete all six chemo cycles to maximise her chances of being well in the long term. Andrew and I had been shown charts mapping the recurrence rates of leukaemia and seen for ourselves in black and white the lines on the graphs which dived down dramatically the more chemo a patient had.

I knew Andrew found the situation very hard. He struggled with the fact that we were not being given definite answers about Hannah’s heart, but I understood that medicine was often more of an art than a science, a piecing together of clues before coming to a conclusion based on instinct instead of certainty. It takes time to make a diagnosis in such a complex situation, and I trusted the doctors to do all they could to find out what was wrong.

In the meantime, we’d stayed in the high dependency unit for Hannah’s second round of chemo to allow the doctors to keep a close eye on her, and this time the drugs had taken an even greater toll on her body than before. As they worked their way into her system, Hannah started being sick up to six times a day and had terrible diarrhoea. Her fingernails and toenails had also fallen out to reveal raw red nail beds which I dressed each day with tiny pieces of paraffin gauze which had been chilled in the fridge. Wrapping them loosely around her finger and toe tips, I would bandage each one as she cried out softly. She also needed gauze pads placed under her heels, shoulder blades and bottom to stop sores developing because her skin was peeling – the new skin so painful that she had to be handled like a burns victim. For several days we could hardly touch Hannah because she was in too much pain, and even her mouth bled – blood caking her gums, teeth and lips which I tried to wipe gently away.

As I did so, I wondered how high a price anyone could pay for being cured, let alone a child. Hannah was wracked with pain, and although I wished I could feel it for her, I couldn’t. Doubts and distress filled me as I watched her suffer. Sick and exhausted, she lay in bed as the drugs worked their way through her body – her face the chalk white of marble, the only movement coming from pink tears which trickled from the corners of her eyes because her mucous membranes were so fragile that tiny spots of blood had seeped into them. Silently, Hannah would cry tears the colour of sunsets which left red crackled lines behind on her pale skin – the fragile markings of her pain.

I bled with Hannah too. Soon after Christmas I’d discovered I was pregnant with my fourth child and was pleased despite everything. I knew it was a bad time and people would wonder how we’d ever cope, but I felt that any life was a blessing and this one was no different. Soon after finding out, though, I had started bleeding and knew I was miscarrying. I told myself the baby had died for a reason and I needed all my strength to look after Hannah. But as I looked at her pink tears, I didn’t know if I could believe in reason any more. What was happening to her simply didn’t make sense.

Hannah sat in the middle of the towel-covered bed. The drugs for her second chemo cycle had finished last week and the curtains were drawn around her bed as a nurse stood in front of us holding a pair of hair clippers.

The previous day Hannah had looked into a tiny pink Barbie mirror before turning to face me.

‘I look like Bert,’ she’d said. ‘Can I be like the others, please?’

Bert was one of her favourite Sesame Street characters, and I knew what Hannah meant. Many of the children on the oncology unit had completely lost their hair and she had obviously had enough of being only halfway through the process. I was glad she was telling me what she wanted again because it meant the little girl I knew was coming back to me.

‘Of course we can give you a haircut, my darling,’ I said. ‘Shall we ask a nurse to do it?’

‘Yes, please.’

I knew I couldn’t bring myself to do it. Hannah’s pale gold hair had always framed her beautiful blue eyes and I didn’t feel able to rid her of it when only weeks before I’d tied it back into bunches and plaits ready for school. It had felt like such a milestone when she started, as if she was moving a step in front of me to venture out into the wide world – the beginning of the rest of her life.

‘This won’t take a minute,’ the nurse said with a smile as she stepped towards the bed.

Hannah had seemed excited as we’d planned her hair ‘cut’ but now didn’t look so sure as the clippers’ harsh metallic buzz filled the room. She was silent as the nurse started cutting and I stood motionless as the last of Hannah’s hair started to fall to the floor and tears ran down her face.

‘I want my hair,’ she said with a sob.

I longed to comfort her, to tell the nurse to stop even as I made myself smile brightly to try and calm her.

‘Nearly there, Han,’ I whispered. ‘Soon you can try on one of your pretty hats.’

I’d bought a couple that I hoped she might like – a straw boater covered with flowers, a red chequered baseball cap and a pink beanie made of soft sweatshirt material.

Hannah was quiet again until the clippers finally fell silent and I looked at my child transformed. Her head was completely bald and her eyes looked even bigger in her gaunt face as she lifted her hand to touch her naked skull – an almost questioning gesture, like a toddler reaching out a tentative foot as they try to climb a step for the first time.

‘Which hat would you like?’ I asked.

Hannah pointed at the boater and I slipped it onto her head.

‘It’s too itchy,’ she said.

‘Silly Mummy,’ I said as I took off the boater. I hadn’t thought of how straw would feel on newly bare skin. There were so many things to learn.

‘Can I try on the pink one?’ she asked.

‘Of course you can.’

I slipped the beanie onto her head.

‘That’s better,’ Hannah said, and smiled. ‘My head’s not cold any more.’

Oli’s third birthday was in late January, and after almost six weeks in hospital with Hannah I was desperate to try and get home for it. I thought of him and Lucy all the time: as I woke in the morning and wondered if they were still sleeping; as I ate my lunch from a hospital tray and hoped Andrew had persuaded them to eat their vegetables; when I heard the sounds of a TV programme Oli liked and imagined him watching it; or when a baby brother or sister came onto the ward and I thought of Lucy’s smiles.

We saw them every other weekend and they’d also come to stay with us for a night. But it wasn’t a great success because Lucy had been in Hannah’s bed and Oli was beside me on the pull-out so no one was comfortable. But I couldn’t bring myself to use the family suite because it meant leaving Hannah on the ward overnight and we both felt anxious if we were apart too long, as if the million invisible strands joining us were strained by distance.

But I was nevertheless aware that children’s lives move fast because things had already changed. I had been sitting by Hannah’s bed one day when I looked up to see Lucy toddling towards me. She’d been on the cusp of walking for a while but my heart missed a beat as I realised I had not been there for her first steps. It was a moment that could never be recaptured, which was why I wanted to be at home so much for Oli’s birthday. Hannah was also going to make the journey with me because, although very weak, the doctors thought she could manage the short trip and I’d been on and off the phone all week organising Oli’s party. He’d asked for a pirate theme and I’d arranged for a bouncy castle to be put up in the garden. I’d also managed to slip out of the hospital for a couple of hours to buy pirate hats and party bags. Now Hannah seemed as excited as I was that we were going home.

‘What presents will Oli have?’ she kept asking as we waited for Andrew to pick us up.

‘Pirate ones!’ I exclaimed with a smile.

We were all a little quiet on the ninety-minute journey home and after pulling onto the drive, Andrew lifted Hannah out of the car to take her inside. I followed behind and stepped over the threshold to smell a different home. Everything was spotless – even the black-and-white checked kitchen floor that was usually covered in paint splashes and crumbs. I knew Andrew and his parents had gone to a lot of trouble, but I felt strange – like an animal that’s gone back to its lair to find the scent of a stranger there. My home felt different now that I was not in it.

‘Mummeeeeeee,’ Oli shouted as he ran towards me. ‘Look at the food. Have you got my present? When does the party start?’

I felt a rush of pleasure to see him so excited as he took my hand to lead me into the garden and look at the bouncy castle. But as we walked outside I suddenly felt anxious. Was Hannah OK? I took a deep breath as I told myself she would be fine. Andrew was looking after her now. This was my time with Oli. He deserved that.

As the party got under way the house filled with children and parents and I went to get Hannah from the lounge to carry her into the kitchen. I wanted her to feel part of the day, not separated from it, and I sat her on the work surface so she could look out of the window at the children playing in the back garden – a gaggle of three-year-olds oblivious to the chill as they flung themselves on and off the bouncy castle. Their cheeks were pink and their laughter echoed through the frozen air as their mothers chatted to each other.

Hannah sat on the kitchen worktop beside me and I looked at her sitting quietly. Tiny veins covered her bald head, a transparent feeding tube snaked across her pale cheek up her nose, an oxygen tube ran under it and two drip stands stood like sentinels at a gate beside her. There were moments when she looked almost old and wizened, as if the weight of the treatment was too much for her to bear. Soon she would need another dose of heart medication.

‘It’s too cold for me in the garden, isn’t it, Mummy?’ Hannah said as she stared outside.

I looked at her, not sure what to say. I knew how much she wanted to play, to be a little girl again.

‘Yes, my darling,’ I said softly. ‘But you can stay in here with me and I’ll watch with you.’

Hannah sat still and quiet as she gazed at her brother playing with his friends. But just before we set off back to the hospital, Andrew cleared the bouncy castle and I carried her outside. It was freezing cold as I stepped gingerly across the garden with Hannah in my arms. She felt so fragile, like a baby wrapped up against the elements. Lifting her gently, I sat her on the edge of the bouncy castle and kneeled down to look at her. She didn’t have the strength to make herself bounce and I knew she wouldn’t want to. But Hannah was smiling as she sat quietly – staring at the grass, feeling the wind on her face and breathing in the world.

It wasn’t just the doctors and nurses on the oncology ward who were filled with energy, kindness and patience. Many others worked with them to make life on the ward more bearable and perhaps the most inventive were the play leaders who found something to make even the sickest children smile. If a boy or girl was lying in bed and crying, a play leader would slide wax paper under their cheeks to catch their tears and show them the pattern they had made on the paper – a spidery trail of drops and wiggling lines to make them smile – or if a child was too weak to move, they would make a shape out of play dough and put it into their hand so their fingers could curl around it. They seemed to possess a never-ending treasure chest of ideas to help children smile and Hannah always looked forward to their visits.

There was one in particular though who could always make her laugh and Hannah’s favourite game with Sarah involved dipping sponges into water before lying in wait for a doctor to pass the bed.

‘Go on!’ Sarah would shriek and Hannah would toss the wet sponge at the unsuspecting passer-by.

‘You got me again!’ the doctor would exclaim with a smile as the missile hit him or her and Hannah started to giggle.

But the one thing she didn’t want to do even with Sarah was talk about her treatment. Although the play leaders had dolls with miniature drains and drips to help the children understand their treatment, the only person Hannah spoke to about it was me and as she remained in remission, her inquisitive nature began to show itself once more.

‘Why are they cleaning my wiggly again, Mummy?’ she’d ask as the nurses flushed out her central line which had to be done every day to ensure the site was kept completely sterile.

‘To make sure there are no bugs, Han.’

‘Like the bugs in my blood?’

‘Different ones, but we don’t want any kind of bugs to hurt you.’

She was also becoming increasingly impatient when blood was taken from her thumb on every visit to the weekly clinic where in-patients and children who were being treated for leukaemia at home were seen. Unlike the routine blood tests which were done each morning using a syringe in her central line, this one involved making a knick on the pad of her thumb with a small blade before a nurse squeezed long and hard enough to collect a few millilitres of blood. For a long time, Hannah didn’t say anything about it until one day we were sitting on her bed.

‘Mummy?’ she asked.

‘Yes, Han.’

‘I’ve been thinking. I’ve got my wiggly in my chest and I know they can take blood out of that, so why do they need to use my thumb too?’

‘I think it’s because they need special blood from the edges of your body and not blood that’s from near your heart,’ I replied.

Hannah didn’t say anymore but firmly refused to have a thumb test done when we next went for one.

‘You can use my wiggly,’ she said to the nurse as she pointed to her central line.

I knew there was no point in fighting with her because Hannah could be very sure if she made up her mind and as she remained in remission, her explanations about how she wanted things done only increased.

‘Please use just a tiny bit of sticky,’ Hannah would say as a nurse changed her dressings because the tape securing them irritated her skin.

‘Is that enough?’ she’d ask solemnly when they cut a tiny piece off the roll.

At other times Hannah would refuse to let the nurses remove all the tape securing her central line because it was just too sore.

‘I think you’ll have to wait until tomorrow,’ she’d tell whoever had come to see her.

Or she’d agree to a dressing change but insist on helping – slowly peeling back the gauze before picking up a fresh piece and holding its edges.

‘We mustn’t breathe on it because there might be bugs,’ she’d say to the nurse.

I knew the busy doctors and nurses might expect me to step in and stop Hannah asking so many questions and I understood that there were times when I had to draw a line with her, however sick she was. For instance, I’d told her off when a group of doctors had gathered around her bed one day and Hannah had kicked out at one as she bent down to look at her, catching her on the side of the face.

‘Hannah!’ I had snapped as I pushed her leg back down.

I knew that Hannah felt frustrated and angry but I had to help her learn to carry the heavy burden of being sick by sometimes imposing normal rules, however hard it felt. I’d seen for myself that many parents on the ward found it difficult to impose limits on their sick children. But while I understood how difficult it was, I didn’t want Hannah to forget what normal life was like.

So I was prepared to draw lines for her on some occasions but on others I was not, and one of those was when she asked questions about what was happening. Hannah simply wanted to know about who was doing what to her, how and when and her views deserved respect. She was the one who had to live all this and while my job was to discipline her at times, it was to fight for her at others too; ask questions when necessary and ignore the answers occasionally.

I knew this because Hannah’s illness had awoken a protective instinct so strong that it almost shocked me. Like any mother, I’d always felt I would do anything to protect my children. But it wasn’t until my love was tested that this feeling became so fiercely practical. My need to protect her washed away my concerns about what people thought of me, the fear of doing the wrong thing and the desire to tiptoe around for fear of causing offence. Early on, I realised that I had to let go of worrying about how my actions were viewed as long as I believed they were right for Hannah.

So although medical advice was always given with the best possible intentions, there were times when I rebelled against it: ‘forgetting’ to brush her teeth when her mouth was bleeding during chemotherapy and too painful to disturb; or asking the nurses to wait a couple of hours so that medications, blood samples and dressing changes could be done together rather than spread out which only prolonged the discomfort.

I found my voice more and more because I wanted to make sure the quality of the life Hannah lived each day was the best it could be and if that meant making her feel safer or giving her just a few moments of respite from her pain then I would do it. Like any other parent, it was a question of balancing my child’s long-term good with the short term. Sometimes that meant the rules had to be respected for Hannah’s sake – but at others they had to be broken.

‘She really shouldn’t go into theatre with her nail varnish on,’ the nurse said as she looked at me.

Hannah was getting ready to go down and have her central line changed. It was the time both of us dreaded most – she hated being put to sleep, and watching her slip into unconsciousness always made me afraid. She had to have a lumbar puncture every month for detailed blood tests to be done and we both went quiet when the time came. Hannah would be lifted onto a trolley and I’d walk beside her through the long hospital corridors – down to the nurses’ station, into the lift, up one floor, out the lift, down another corridor, into another lift, down two floors, into another corridor – each step taking us nearer to theatre.

‘I don’t want to go to sleep,’ Hannah would cry.

‘It will just be for a little while,’ I’d reassure her.

‘But I don’t want to.’

‘The doctors need to make you sleepy, my darling, but it won’t be for long. A nurse will be with you and I’ll be there until you go to sleep.’

‘But I’m not tired.’

‘Well, the doctor will give you a special medicine so that you are.’

‘How can he do that?’

‘Because he has lots of medicines to do different things: some fight the bugs in your blood and some put you to sleep.’

For a little while Hannah would go quiet as we travelled through the hospital, but as soon as we got to the three anaesthetic rooms leading to the theatres she would start crying. Scrabbling for me with her hands, the doors would open and she would be pushed feet first into the tiny room.

‘Mummy, mummy, I don’t want to sleep,’ she’d sob.

‘I’m here,’ I’d whisper. ‘I’m with you.’

But as a mask was slipped over her face or the anaesthetic was connected to her central line, Hannah would struggle to stay awake even as she started falling into unconsciousness.

‘Help me, help me, help me,’ she would cry as her body twitched and I had to leave the room so that the staff could intubate her.

It was only when I got back into the corridor that I would start to cry. As Hannah lay unconscious in theatre, I would think of her pleas and the cries she had made as she clawed the air for me. Seeing her in pain, whether mental or physical, went against every instinct I had as a mother however much my rational self knew that she had to have treatment.

Now I looked at Hannah’s toenails as the nurse held out the nail varnish remover for me and I wondered what to do. Hannah loved having her nails painted, each one a different colour so that she could stare at the rainbow on her toes – pink, blue, green, red, yellow – as she lay in bed. Even when she couldn’t speak, she’d wiggle her toes so the nurses could admire them.

I knew what I had to say.

‘I can’t take the varnish off,’ I said to the nurse.

She looked at me – sympathy and routine wrestling across her features. Nail varnish was supposed to be removed during a general anaesthetic so that the patient’s nail bed colour could be checked as an indicator of circulation.

‘Just one?’ she asked.

‘No,’ I replied. ‘If I do a toe then you’ll do a toe, then a finger, and soon it will all come off.’

‘But I think we’ll have to.’

‘Well, I don’t want to do it. I’m sorry but I know there are many other ways of checking that she’s OK without seeing her toenails.’

The nurse looked at me.

‘If you have to take it off then I want you to do it while she’s asleep,’ I said slowly. ‘And if you do then I would like someone to draw a chart with every one of her fingers and toes written on it so that you can reapply the varnish before she wakes up. I know it’s a lot of work but it’s important to her.’

The nurse looked at me.

‘We’ll see what we can do,’ she said with a smile.

As the nurse left the room, I looked at the colours sparkling on Hannah’s toes and breathed a sigh of relief. If I was going to let the doctors do what they must to save my child’s life, then they had to listen to me when it came to making it slightly easier for her. She loved looking at her painted nails. I wanted her to have that.

I could hear the cries as they cut through the stillness of the ward. It was the early hours of the morning and I sat up to check that Hannah was still asleep. The sobs echoed down the corridor and cut through me – a haunting lament for a son or daughter lost, an animal howl of grief that made my heart twist. Somewhere nearby, a child had lost its fight against the illness we were all trying to conquer.

These were the darkest moments on the unit – the time when my hope was stretched to its limit. Each day I clung onto it, knowing what might happen if Hannah’s treatment was unsuccessful but believing it would be. Only the sight of an empty bed which hours before had been filled by a dangerously sick child, or the quiet sadness which curled around the unit when a girl or boy died, threatened to dent the dam of hope I’d built inside.

‘Mummy?’ I heard Hannah whisper. ‘What’s that noise?’

I got out of bed and sat down beside her. Looking at her pale face, I wondered how I could possibly explain what had happened without showing my fear.

‘I think one of the children is very poorly and their mummy is sad,’ I said softly.

‘Have they died?’

Death was a concept Hannah had quickly become familiar with in hospital. It was part of life here and she knew that children who were there when she fell asleep had sometimes gone by the time she woke in the morning.

‘I don’t know, Han.’

I smoothed her hair back from her forehead, soft strokes to try and soothe her back into sleep. I didn’t want these sounds to frighten her.

‘What does heaven look like, Mummy?’ she asked.

I paused for a moment. I’d tried to make death and heaven things that didn’t scare Hannah when we’d talked about this before. Now she wanted to again.

‘Heaven is a beautiful place where God lives,’ I said. ‘There are no bad people there, or medicines. Instead there are lots of apples on the trees and daisies in the fields.’

‘Do you have to go to school in heaven?’

‘No. You can play.’

‘How do you get to heaven, Mummy?’

‘If you’re really, really poorly then you fall asleep and wake up there.’

‘Will I go to heaven?’

‘Not now, Han. You only go when you’re very, very sick.’

‘I’m not poorly enough?’

I paused for a moment. A sadness so strong filled me that I could hardly breathe but at the same time I felt a sliver of still peacefulness – gratitude that Hannah could ask questions and trust me to give her any answers I could.

‘No, darling. You’re not poorly enough and I promise that you’ll wake up tomorrow for a whole new day.’

I bent to kiss her.

‘Now close your eyes and I’ll stay right beside you.’

I pulled Hannah’s duvet around her and waited until I was sure she was sleeping again. My body felt tense, my skin almost prickling, as if an aftershock of the woman’s cries still pulsed through me. I thought of all the other parents here in this huge hospital, wondering who else had lost their child tonight. If it wasn’t now, it would be tomorrow or the next day; if it wasn’t an illness, it would be a child brought in after a terrible accident. I shivered as I thought of those parents for whom bereavement came in an instant, the mothers and fathers who had no sign that grief was about to rip a hole in the fabric of their life. Even though I had watched Hannah walk a road I had wished many times that I could travel for her, I was glad I had been given the chance to walk by her side.

She and I had had time together – to talk, smile, play games and just lie in silence. I’d had time to comfort and soothe her, prepare her in whatever way I could for whatever lay ahead and give thanks for being her mother. Now I thought of other mothers suffering a pain I couldn’t even begin to imagine as they tried to negotiate a world they never wanted to know and vowed that I would never take time for granted again. As I listened to the steady breathing of Hannah’s sleep, I knew that once again she’d taught me just how much I had to be thankful for.