How To Be Brave (3 page)

‘No, you’re not.’ He paused. ‘Is she going to be okay? I just can’t take it all in. What happens now?’

‘Injections. Forever. But yes, they say she’ll be right as rain in a few days.’ I braced myself for a question I feared the answer to. ‘So will they let you come home?’

Jake didn’t speak. I imagined I heard gunfire, but it was only a truck backing up on the opposite side of the road.

‘They
should
let me yes. I don’t know how soon, I’ll have to find out.’

‘I’ll cope until then,’ I said, and added, perhaps more to convince myself, ‘I
will
. I don’t want you to worry; you have to stay safe. I’m sure I can manage this for a day or two until you’re here. How hard can it be? They’re going to show me how to do it all soon. I’ll be fine. Rose will be fine. I promise. I’ll look after our little pal.’ We’d always affectionately called her this and as I said the nickname my throat closed up.

‘I wish I was there for her,’ said Jake.

‘I know. But
I’m
here.’

‘You need to get back to the hospital.’

‘You want me to go?’

‘I just want you to be with her, in case she wakes up,’ he said. ‘God, I feel so useless!’

‘You’re not. You’re just doing what you signed up to do. Last week Rose had to do this project about who her hero is – she wrote about you. You keep yourself safe and I’ll keep our little pal safe.’

When he didn’t speak I knew all the words he wasn’t saying.

‘I’ll get back to her,’ I said.

‘I’ll ring as soon as I possibly can with news of when they might release me. You’ll call the helpline if anything else happens, you promise?’

‘Of course I will – but it won’t.’

‘I love you, Natalie.’

‘Love you too.’

After hanging up I sat still for a moment. Sunlight began to slide its way along the roofs and trees, its fingers not yet quite long enough to touch my car. As natural light took over, the electric lamps died. Soon Rose would rely on injected insulin to do what was the natural job of her pancreas. How I wished I could give her mine.

I telephoned each of my parents. They’d separated when I was eleven, amicably, different natures dividing them like fields and forest. My mum lived on the Isle of Wight now with a man much younger, someone who lived life with the same vigour. My dad lived a bit closer, but his secluded nature sometimes made it seem as though he were as far away.

Each responded differently, but completely as I’d expected. Mum wailed and asked when she should come up, to which I insisted there was no need. Dad calmly asked practical questions and for facts about the nature of the illness. I gave them what they needed.

Then I drove back to the hospital.

Rose was still sleeping. A faint blush of red now coloured her cheeks. I’d wanted to call her Little Pink when she was born because the midwives had said what lovely skin she had. Quite rightly, Jake suggested she might be mocked at school, and so we settled on Rose.

I put her two books under the stiff hospital pillow and sat back in the chair. A nurse I’d not yet seen came in with one of the blood-reading devices.

‘Oh, you’re back.’ She pricked Rose’s finger end. This time my daughter jerked away. ‘She’ll be awake soon and she might not be herself – she’ll be dead crabby. She’ll want to eat everything in sight for days until her blood sugars stabilise.’

‘When can we go home?’ I asked.

‘Usually it’s after a few days,’ she said. ‘This morning Shelley, our diabetes nurse, will come and sit with you and explain everything fully. There’s plenty of support, but she’ll give you that information.’

‘Thank you.’ I suddenly realised that I too was hungry. When had I last eaten? I’d picked at Rose’s chips yesterday lunchtime, finished her yoghurt.

As though she’d read my mind the nurse asked, ‘Can I get you a cup of tea and some toast?’

‘Oh, that would be wonderful.’

When she left I stood by the window and watched the traffic build below. Nothing changed, not really. What happened in our small hospital room made no difference to the morning congestion; our frontline wasn’t newsworthy, Rose’s diabetes no headline.

I could see the river from here, the odd boat, the bridge. My breath clouded the glass and through its fog I thought I spotted the brown-suited familiar stranger strolling merrily past the ambulances. I wiped the condensation with my sleeve and looked more closely, banging my forehead on the window. I heard a whistle on his lips, that rich accent. Perhaps he was heading for the docks, for the sea. But it wasn’t him – this man was blond and had a briefcase and umbrella.

I turned to go to the chair and as had happened yesterday when Gill tried to persuade me to sit down, a curious line came into my head:
You’re going to be picked up, I tell you
. The room swayed like I was at sea. This must be exhaustion, I thought. I held on to the metal bed and shut my eyes a moment.

‘They’ll be picked up.’

I opened my eyes again. Rose was watching me, eyebrows frowny.

‘Hey you,’ I said softly. ‘What was that you said?’

‘What was what I said?’ She sounded just like she did when I woke her too early on a weekend.

‘Something about being picked up?’

She shrugged and I realised I was interrogating her. ‘How do you feel?’

‘Hungry,’ she snapped.

I touched her damp forehead. ‘You will be. The nurse is coming back in a minute and I saw a food trolley go past earlier.’

‘What am I doing here?’ she demanded. ‘This bed is too hard.’ She noticed the drip in her arm. ‘What’s this for?’

‘Don’t pull on it, you’ll hurt yourself.’ I tried to hold her free hand but she shook me off. ‘It’s putting some important medicine into you.’

‘Why? What’s wrong with me?’

I could only think of one word and she wouldn’t understand it. I was rescued by the return of the nurse, holding a cup of tea and some toast and jam.

‘Ah, you’re awake,’ she said to Rose. ‘I bet you’re hungry, eh? What do you think you’d like?’

‘Don’t care,’ she said.

‘Tell you what.’ The nurse put my drink and food on the cabinet. ‘I’ll ask them to bring the trolley back so you can pick whatever you like. Okay?’

She disappeared again. I sat closer to Rose – her smell was off, alien, a mixture of sleepy child and sterile sheets.

‘Look under your pillow,’ I said.

She shrugged, ignored me.

‘Go on, look. I put your books there, just how you like. I couldn’t see a bookmark in any of them – sorry. Maybe it fell out? But I bet you’ll remember where you were up to once you start reading.’

She shrugged again. ‘Where’s Dad?’

‘He’s away, remember. He’ll be back just as soon as he can be.’

‘But I want him now.’

‘I know. I rang him and told him you’re here. Even if he set off for home right now it’d take hours, even days, to get here. He’s thinking of you.’

Rose still wouldn’t look at me.

‘Why don’t you look at your books?’ I pulled one from under the pillow but she didn’t react. ‘Well, you can read when you feel like it.’

Rose pushed my hand roughly and the novel flew across the room, falling like a parachute carrying life-saving supplies.

The nurse returned with a plate of toast and fruit and some milk, which she put next to my food before retrieving the book.

‘
War Horse?
I saw the show in London,’ she said. ‘Have you seen it?’

Rose shuffled farther away from me, didn’t answer. The nurse put a hand on my arm and whispered that she would be unreasonable like this for a few hours. She said we should wait until then before we explained everything to her.

But how would I ever tell Rose that the finger-prick tests and injections she’d soon endure while conscious would continue at home, forever? That what she might think was merely hospital procedure – medicine to make her better like Calpol – was in fact her new life. That if she didn’t have it, she might die.

‘Why don’t you eat your toast and we’ll look at War Horse together?’ I said instead. ‘Like we used to in the book nook.’

Rose shook her head. ‘Get it away from me,’ she cried. ‘I don’t want it. You think I’m stupid. Books won’t make me feel okay. All the animals in them are dickheads – and you are too!’

My phone began ringing, demanding attention over Rose’s outburst. I tried to calm her but had to take the call. It was Jake – as I left the room to speak to him, Rose’s words followed me; their vowels and consonants clinging to my clothes like the sterile hospital odours.

‘I won’t be able to come home,’ was all I fully heard from Jake. Then broken bits of explanation about how Rose was “in no danger” and her condition wasn’t what they assessed as “life threatening” and so didn’t “warrant compassionate leave.” He’d be home in two months on his already arranged leave. I could hear how distressed he was about it but my own feelings of abandonment were stronger, and cruelly I hung up on him, regretting my haste immediately.

I went back into the room.

Rose sat, arms crossed, and as though to have the final word she said, ‘I’m done with books.’

All the stories died that morning.

Until we found the one we’d always known.

Four nights I slept on a foldout bed next to Rose. It was too low for me to watch her sleep, whispering the curious, nonsensical language of dreams, but also hidden enough for me to use my phone to search secretly online for information about diabetes.

I was haunted by what I found. I heard whispered words like
kidney failure
and
heart failure
long after I’d turned my phone off. I heard
blindness
and
hypo
when being busily tutored in my imminent new care role by numerous professionals. I heard
risk of stroke
and
nerve damage
when trying to sleep.

Often during the night I left our little room and walked up and down the main stairs, over and over, until my knees hurt and my forehead sweated and my heart raced. I wasn’t sure if I was running towards or away from something. I wanted to call out for help but had no name to call.

When I finally fell back asleep I dreamt I was on a boat.

It was small, perhaps only big enough for ten people, and it tipped and swayed with the waves’ motion. Tins of something clanked together at one end, and a notebook or log or something else papery fluttered nearby. I touched the rough pages – it was too dark to see much so my fingers did the reading. Beside me, never waking, someone slept. No matter how I shook him and demanded, ‘Why am I here? Who
are
you?’ he never stirred.

I woke each morning to the smell of the sea, queasy with exhaustion, hoping Jake had rung back so I could apologise. No missed calls.

I drank strong coffee, and put on a smile for Rose, and was determined to learn how to care for her properly. Diabetes Nurse Shelley was my daytime mentor, coaching me in the use of finger-prick tests to read blood levels, and in how to prepare and give injections, and where on the body was best to administer them.

Having failed maths at school, I struggled with the numbers. The desired blood sugar reading for a diabetic is between four and ten, though this range varied depending on which website I read at night or which nurse answered my endless questions. Shelley said it would take time to get Rose down to such levels and that I shouldn’t worry if her readings were still as high as fifteen for some weeks yet.

‘Sadly,’ Shelley said, ‘these early days are hard because the pancreas occasionally adds its natural insulin to the insulin you inject.’

And then more numbers to baffle me – the dose of insulin. How to work that out? I learned that it depended on numerous factors; size of child, what has been or might be eaten, recent blood reading, and how many doses were being given each day.

I asked Shelley to give me a mnemonic, explaining that I did better with patterns, with words, with rhyme. When I was small I’d loved the quirky expressions my English teacher gave us to remember grammatical rules: I before E except after C, and when she told us to think of the apostrophe in
it’s
and
she’s
as a gravestone for the missing letter.

‘You’ll have to find your own way with that, pet,’ Shelley told me. ‘Diabetes is a condition where practice really does make perfect, to use a more helpful phrase. At home you’ll fall naturally into your own routine. One day something will click – I promise you. But it’ll take time.’

Time stretched before me, like darkness beyond the car headlights on a country lane. I knew there was plenty of travel looming but could only see the next few hours of it. At the end would be Jake’s return, but between now and then it was just Rose and me. I longed for him to call. I knew he’d want to, that he’d have understood and forgiven my overreaction to his news. But his role as army sergeant in the middle of a warzone meant a quick visit to the nearest telephone whenever his wife had a tantrum wasn’t warranted.

I’d already decided I couldn’t go back to work, though for how long yet I wasn’t sure. How long would it take to make sure Rose was okay?

I worked part time in our local theatre as an usher and loved that I got to see shows for free and watch the occasional rehearsal. Being in such a creative place made my heart warm, reminded me of how I’d felt long ago when I scribbled made-up stories in notepads. It never ceased to amaze me how a story could be brought to life by the actions, tone and voice of the actors, how lights and sound could recreate a scene from the past or realise one from the future. I would miss being there but knew the staff would understand.

My good friend Vonny looked after Rose when I was working. Vonny and I had known each other at school but being in different years meant our paths never really crossed and we only met properly at a prenatal group when we were pregnant at the same time, her with her son Robert and me with Rose. Then we’d found a gentle compatibility, a friend we could each turn to at any time.

She came to the hospital twice while Rose was there, bringing small gifts and making little fuss, as was her way, something Rose usually enjoyed. This time Rose took her presents but just nodded politely at Vonny’s attentions, rather than making jokes and asking where Robert was.

Vonny would be a perfect carer for Rose with this new challenge, but I didn’t want her to do it; I couldn’t expect her – or anyone – to have to deal with injections. I wanted to leave work and be home all the time, whenever I was needed, so Rose never had to go to bed sad or wake up afraid.

In the hospital she ate everything the trolley provided and asked for more. I bought bananas and packs of crisps from the canteen on the second floor and watched her devour them without pausing for breath. Hunger replaced thirst and I was glad after the scales said she’d lost almost a stone in the preceding weeks. Her mood picked up when her appetite was satiated, then dropped when the nurse came in with the blood-testing meter. She clawed and hit us, threw and broke two devices, and called us dickheads.

One nurse offered her a Shrek annual to look at and Rose said, ‘You must think I’m stupid – you want to stab me again!’

Shelley gave us a colourful book on diabetes, written for children and illustrated with simplistic pictures of too-happy kids self-injecting. Rose refused to look. She asked for her dad and continued to fight every finger prick and injection, and then cried into her elbow and wouldn’t let me comfort her.

‘Maybe it’ll hurt less if you relax,’ I said, feeling useless.

‘You’re supposed to be on my side!’ she wailed. ‘You’re supposed to tell them I don’t want it and make them stop. Why
don’t
you?’

What could I say?

‘Because you need insulin in your body now,’ I tried.

‘I’ll swallow it then.’ Hope made her touch my arm and let me sit closer on the bed. ‘I’ll swallow those little headache sweet things. I’ll learn how, I
promise
, Mum.’

‘It doesn’t work like that,’ I explained, relieved to be physically close to my daughter again, to be able to smell the yogurt she’d just eaten, breathe in her increasingly less familiar scent. ‘When you swallow insulin it breaks down in your tummy before doing what it needs to.’ I was surprised by how much I’d taken in over the course of my diabetes tuition.

Rose pulled from me again. She looked away to hide the fear in her eyes. But I saw it. Knew the reality that she was ill had begun to sink in. She didn’t fight or kick when the nurse did the next blood test, she merely looked away as though none of it existed, and that made me the saddest of all.

On our penultimate day a dietitian told us about the best foods for Rose. My daughter crossed one arm and with the other drew doodles of faces with mouths downward on a card her Aunt Lily had sent. I tried to take everything in, to hear this latest lesson over the angry scratch-scratch of her pen.

Not only was there a regimented routine of injection and finger-prick testing for us to look forward to, but Rose would have to avoid high-sugar foods and eat a portion of starch with each meal, as well as plenty of vegetables. Also we would have to maintain her sugar levels with regular snacks.

What would Christmas be like for her this year? Jake would be home after New Year and that might help her cope. But while others indulged there would be no treats for her; there would be injections with every meal, and a blood test before going downstairs to see if Santa had been. I decided I would forgo whatever food Rose had to miss, so she wasn’t alone.

We settled in for what the nurse said could be our last night, Rose sulky in her pink cow onesie, me in clothes I’d worn for two days. We’d be disturbed in the dark at least three times for finger-prick testing so I wanted her asleep well before nine. She let me kiss her damp forehead and tuck the covers under her still-thin body. I slid
War Horse
back under the pillow in case she woke as hungry again for words as she was for snacks from the trolley. Her surrender to my attentions wasn’t because she felt okay; it was resignation. Defeat. I wanted my fighter back even if that meant more battle.

On the pull-out bed I closed my eyes, exhausted.

‘Tell him to stop pulling my covers,’ Rose said, half asleep.

‘Who?’ I asked, sitting up.

But she’d gone, her chest falling and rising like the ocean.

I dreamt again that I was on a boat.

It was so small that if someone sat opposite me, our knees would have touched. My bones hurt like I’d been there a long time, and my lips cracked when I moved my mouth. Cold, salty spray showered my skin. Nearby, someone slept. I tugged on his shirt’s coarse material but to no avail.

Eventually the rhythm of the sea and the swish-swish-swish of foam lulled me into lethargy. Can you sleep within sleep? I did – until roughened fingers tugged on my arm. He was silhouetted next to me, a shadow against grey.

‘Who are you?’ I asked.

‘You know me,’ he said.

And I did. Hadn’t he come to my bed when I was small? Was it Grandad Colin? I’d never seen his face fully and I couldn’t now. I realised how dark it was at sea when clouds suffocated the moon and stars. I wished for the moon; then I’d see. I wished for a star or two; then I’d know.

But I heard a voice saying, ‘Mrs Scott’ and knew real life beckoned. I resisted, reached for him, kept one toe in my dream.

‘Why are you here?’ I asked.

‘Because you called for me.’

‘Did I?’

‘Find the book,’ he said.

‘What book?’ I asked.

And then a nurse shook me awake, into light.

‘The doctor’s on his way.’ She cut me free from my dream’s anchor and I drifted away. I resented her for severing the line. ‘If he gives us the say- so, you should be able to go home,’ she said.

The words terrified me. Home was a place no safer than an abandoned boat now. I wasn’t sure I could do all the tests and injections there. Leaving the hospital with Rose, a box of diabetes paraphernalia, booklets and on-call numbers reminded me of when we’d taken her home from the hospital days after her birth and plonked her car seat in the middle of the living room and looked at one another in raw panic, saying, ‘What the hell do we do now?’

But choice was not mine. Rose sat in the middle of her bed, face impassive. No joy at going home, no fear of what was ahead, no anything at all. A stain of orange juice circled the cow on her onesie pocket, like a protective halo. She shuffled back up the bed with her eyes closed, opening them only to stare out of the window.

‘That’s it?’ I asked the nurse.

‘That’s it,’ she said, and seemed to rethink. ‘Of course you’ll get all the support you need at home. You’ve got the hospital switchboard number too, yes? You’re aware of hypo management?’

With Rose’s blood sugars still so high we’d not experienced hypos yet but Shelley had warned me of low blood sugars resulting in moodiness, confusion, and eventual unconsciousness if not treated with glucose. It felt like if we conquered one part of diabetes, another challenge would surface.

‘Shelley will visit you a couple of times in the next few weeks.’ The nurse paused. ‘I know how daunting it can be but it’s very rare a diagnosed child returns to the hospital.’

I doubted there were any words she could have strung together that would lessen the weight of responsibility tightening every muscle in my neck. I should have said thank-you but was never very good at it. Instead, since action always distracts me, I got our things together and asked Rose to put on her day clothes.

War Horse
fell from under the pillow when she got off the bed. She ignored it so I picked it up, instinctively dusting down the jacket and looking inside. There was an inscription –
Happy Christmas Rose, love Mum and Dad
. We bought her at least one book every Christmas and on birthdays; we also rewarded good marks at school with them, and chose a surprise one if we went away.

Find the book. My dream.
Find the book
, he’d said. Was
War Horse
the one I should seek? But we already had it, had never lost it. So which one was I supposed to look for?

Find the book
.

But if I didn’t know which one, how on earth would I know where to look?