by Louise Beech
‘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?
4
EVERY STORY WRITTEN
One week over and no ship. Still hoping.
K.C.
Rose went missing six days after we got home.
Like a shadow at dawn, she slipped away while I slept. I’d been dreaming of the ocean again. This time the sun joined me, bathing my surroundings in sharp gold light, and I could finally see the vessel I’d drifted in night after night. It was a crude and weatherworn wooden lifeboat, perhaps twelve feet by eight. Masts at either end had greying sails attached, dangling forlorn in the windless air. The steering oar behind me was broken; without it navigation was impossible; and with the useless, threadbare sails, the travellers in this boat were at the mercy of the sea.
Except for me, it was empty. I wished for my ethereal companion and looked about for him, but there was nowhere to hide on this small craft. I stared out over the sea, rippling with jade and turquoise and amber, and then settled back against the wood and waited.
Water gently licked at the boat’s edge; kiss, kiss, kiss. High now, the sun hypnotised me. I closed my eyes briefly and when I opened them again, after what seemed like forever, a flash of burnt orange caught me by surprise. On the opposite bench was a cushion. I recognised it at once – how many times had Rose sat on it, cross-legged, pages open, waiting for a story in the book nook?
But what was it doing here?
Wasn’t I supposed to be looking for a book?
I might have slept on longer, and discovered who’d brought the cushion from home, but my phone vibrated on the bedside cabinet and pulled me away from the cruel sun, watery kisses and confusion.
‘Hello,’ I croaked, my throat parched.
How could a dream have such an effect? It felt like I hadn’t had a drink in days, even though I’d had half a glass of water after doing Rose’s finger-prick test at 3 a.m. Was this how Rose had felt?
‘It’s me,’ a male voice said.
‘Jake.’ I sat up straight, dreams forgotten. ‘Oh, Jake, I’m so sorry about how I was at the hos…’
‘Forget about that,’ he said, like I’d known he would. ‘I know how that must have been for you and I’ve felt bad that I couldn’t call sooner. Look, I might not have too long, so how are things? How’s Rose?’
‘She’s…’ I didn’t know how to describe it.
The first three days back home Rose had ignored me, and the last three she had fought me as passionately as she’d previously disregarded me. At least in conflict I could see the child I knew before diabetes, the one who questioned everything I suggested and listened carefully to how I thought something should be done but then went and did it completely the opposite way.
Her middle name should’ve been Wilful, I’d often said to Jake, knowing the moment I’d finished that last syllable he’d say, Just like you.
Oh, she was headstrong. She challenged my patience. But this made her sweetness all the more potent. The times she’d stilled my hand from scrubbing a curry-stained pan or stolen my breath for a moment with some sensitive observation or compliment.
‘She’s…’ I tried again.
‘God, I feel so useless.’ Jake’s quiet words supressed what I knew was killing him. ‘I can’t even do any research on diabetes out here. I talked to a few of the lads – I had to – and one said his mum has it, but she lost her … well, you don’t want to know about that. Is Rose getting better? Is the insulin stuff working? Does she let you give her it?’
I nodded, said, ‘Yes, we’re doing the insulin.’
When she’d sat cross-legged on her bed the first morning at home, and held out a limp hand for finger pricking, I’d expected her to resist.
‘You’re okay with me doing it?’ I’d asked, scared to pierce her tiny finger.
What if I did it wrong? How could I do properly what the nurses had been doing for years? I’d tried to think of anything except what I was about to inflict on her and my mind settled on the pumpkin still rotting on the kitchen work surface, its candle inside mysteriously dead. I saw the ridges and haphazard teeth and the crooked lid. Picturing it, I’d prepared the device, put the lancet in, clicked the lever back and held it clumsily, a student nurse trying to act like she’s a pro. I knew that however scared I felt, Rose was the one truly enduring it.
When she gave no response to my question, I’d gently touched her cheek, tried to turn her to look at me. She’d acquiesced, but her eyes were dead.
‘She was so compliant,’ I told Jake.
‘Well, isn’t that good?’
‘No,’ I whispered. ‘She wasn’t there. For three days she just gave me her fingers … let me inject her little legs. Oh, her legs – like two twigs. It was like some floppy, silly, obedient creature had replaced our daughter! But oh, she’s back now.’
How suddenly Rose had changed from not there to absolutely there. On the fourth day at home she leapt out of bed and screamed when I approached her with the box of diabetes stuff. We’d circled the room, her the bull and me the bullfighter, her red nightie tempting me to tame her.
Catch me, her eyes said.
I did eventually, after verbal begging and persuading, after blackmail in the form of promised money and days out, after finally sitting on her tummy while trying to be kind, gentle, motherly.
Is a mother supposed to do such things? Should she physically force some
thing on her child? Smother her child’s protests, lose her own temper, and cause more pain? Forced flesh resists needle, resisted needle bites harder. But I had to put my guilt in the kitchen cupboard with the tins of beans so I could do what had to be done, and scream into a pillow later.
‘You’ve no idea how strong she is,’ I told Jake.
‘Oh, I can imagine.’ I heard a smile in the words and my instinct was to berate him for being cruel, laughing at my difficulties, but I knew affection shaded the sentence. Suddenly I could smell him as though he’d sneaked up behind me. Clouds of his aftershave and deodorant and man skin enveloped me; loneliness joined it, threatening to suffocate me.
‘She’s never going to forgive me for forcing this on her,’ I said.
‘She will. She knows you have to.’
‘I’ve already bruised her. I can’t do it today, Jake!’
‘You can,’ he said. ‘You’re doing an amazing job. No one could do it like you. She was probably letting you because she trusts you.’
‘I’m going to lose her.’
‘Never,’ he said.
But I already had. Whenever Rose thought I wasn’t looking she glared at me, hazel irises aflame with rage and resistance, and with something I’d no name for but I feared was hatred. She’d scribbled all over the blood readings I had to record in a log book and growled when I said she was behaving like a three-year-old. She’d taken the insulin out of the fridge and binned it. She’d snapped the ends off lancets and cut up the repeat prescriptions before I’d even figured them out and eaten four snack bars instead of one.
Her pancreas was dying, and so was our relationship.
‘Can I talk to her then?’ asked Jake.
I looked at the bedside clock – how could it be nine? Rose should be awake. Even though I’d kept her off school a few days she had still woken promptly each day at seven-thirty, ready for battle.
‘We’ve overslept.’ I got up. ‘I’ll go and get her. Oh, I bet she’ll be happy to wake up to a call from you. Might start the day a lot better.’
