Hope

by Rhian Ivory

  Shite, are you alright? What’s happened?

  I’m ringing, you better answer.

  And before I can chicken out I dial his number and he actually answers. I tell him all about what happened with Nonno. And Mum. And Callie. It feels like I recognise his voice, as if we’ve been talking all this time instead of texting. He sounds familiar when he tells me about all the arguments between his sister and his dad. And once he’s started he can’t stop talking: how trapped he is, how stuck. And I can’t stop asking him questions about what his sister said and where she’s gone and why. Just when I think alright, that’s enough, no more for tonight and I go to end the call, I can’t because he needs me. He needs me this time. And for some reason that feels good.

  ‘You’re here!’ Pryia shouts, when I walk into the staffroom on Monday morning.

  ‘Err, yeah. No need for the cheerleading squad, Pryia!’ I joke, not really expecting such enthusiasm this early in the morning. I finish my text to Callie and put my phone away. I shamelessly had to namedrop Nonno and tell her what happened, but it worked, she rang me straightaway and then turned up at the hospital. Mum and I haven’t been into work for a few days, because of Nonno. Between Mum and me and Callie’s visits, he’s been kept busy.

  ‘Kofi’s asking for you,’ she says. She’s still pretty loud.

  ‘I’ll be there in a minute, let me just…’ I turn to pick up a purple bucket of instruments. Pryia grabs my shoulders and spins me round. I drop the bucket.

  ‘There’s no time. You’ve got to come now.’ I see the panic in her eyes.

  ‘Why?’ I ask but I don’t need to. I hear it in her voice.

  ‘He was taken into ICU over the weekend,’ she replies, and simply takes my hand and holds it in hers. ‘Hope? Are you okay?’ Pryia asks. She sounds like an echo, as if she’s said my name a few times but I’m only just hearing it.

  ‘Let’s go.’ I let her lead me past Kofi’s room, up the stairs towards ICU. I force myself to read the sign. It’s black and white. Not yellow. This isn’t Dad. This is someone else. I stand outside the door. I push it open and the door handle clashes with the wall. I walk into the room. I keep talking to myself in my head: I can do this.

  ‘Kofi!’ I say it loudly, so I can’t hear the beeping. My voice doesn’t sound like me but at least there’s sound. He’s in what looks like a cot. It’s a bed but with rails. He is lying very flat on his back. I can only really see his face. He has tubes coming out of his nose and something over his mouth that must be oxygen. His mum sits on a chair next to his bed. She looks smaller, shrunken. There are nurses everywhere but it’s really quiet. Everyone’s whispering and walking softly, trying hard not to make any noise. His eyes are closed but his chest is moving up and down. I watch it for several seconds until Pryia’s words filter through.

  ‘Mrs Agard has asked us to come and sing to Kofi,’ she explains unnecessarily to the nurses. They nod. Kofi’s mum doesn’t even look up at us, her eyes are on Kofi the whole time.

  I start singing, keeping my eyes on the rise and fall of Kofi’s chest. And Kofi breathes on and on with the help of a ventilator which

  Clicks and whirs

  Clicks and whirs

  Clicks and whirs.

  Mum’s waiting for me in the staffroom at the end of the day. I cry without holding back. I don’t really notice who else is in there. She wraps her arms around me until I’m able to talk.

  ‘He looks too small in the bed,’ I say into her shoulder. She doesn’t reply. ‘And his mum has shrunk, she’s lost so much weight. All I can do is stand there and sing stupid songs.’ I pull back to look at her.

  ‘They aren’t stupid. They mean something to you and Kofi. You’ve built up a bond. Believe it or not, you’re helping him and his mum,’ she tries to reassure me. ‘That’s all you can do right now.’ She’s right, but somehow it doesn’t feel enough. Today it doesn’t feel anywhere near enough.

  ‘Here.’ She hands me my mobile, which I thought I’d left in my locker, but I’m too shocked to take it. It falls to the floor.

  ‘Don’t smash the screen! I’ve only just got it repaired. Had to sneak it out of your locker at lunchtime,’ she tells me, trying to smile.

  ‘Why?’

  ‘Because if I can’t trust you, who can I trust? You didn’t feel you could tell me about this Riley boy, you couldn’t confide in me, and that means something has gone wrong. I should have told you about Nonno’s heart problems and his crazy cholesterol levels. You’re right, I should have talked to you. You’re not a baby anymore,’ she admits.

  ‘Even if I act like one?’

  ‘Even then,’ she says, brushing my hair out of my face.

  ‘If we’re doing the whole full-disclosure thing, there’s something I’d better tell you.’

  ‘Worse than that you’ve got a secret Irish boyfriend who you’ve been sneakily messaging?’ She tries to say it lightly, but it sounds loaded. I can hear how much its cost her to try and make a joke out of the secrets I’ve been keeping, which makes what I’m about to tell her even worse.

  ‘Yes. There’s something worse than having a secret boyfriend, not that he’s my boyfriend but…’ I’m getting confused. ‘I’d better tell you that we’ve been on the phone talking for most of the weekend.’ She doesn’t say anything so I carry on. ‘But I didn’t just bump into him on the ferry, Mum, that’s not how it happened, I…’

  Mum stands up and holds out her hand to me. ‘Let’s get out of here.’

  We walk out into the garden of remembrance, which is unusually quiet. She sits down on a bench and pats it. She’s trying so hard. She thinks this is going to be a mother-daughter chat and whatever I’ve got to tell her can’t be that bad. But it is. It really is.

  ‘He saved me,’ I tell her.

  She frowns but stops herself from saying anything.

  ‘I was… I was in a panic, a real state. I’d failed and I didn’t want to go home and I didn’t know what to do. Everyone else was in the restaurant celebrating and I went for a walk on the deck in the rain. I wasn’t with them anymore. I didn’t have anyone to talk to and it was the worst time it could have happened, everything’s always worse when…’

  This time she stops me because I am not making sense to her.

  ‘What’s always worse?’ she asks, confused.

  ‘Because it was the week before,’ I tell her, hoping she’ll get it.

  ‘Week before what? A date? An anniversary?’ I can tell she is searching her mind for dates about Dad.

  ‘No. It was never about Dad,’ I tell her and she moves away from me a little. I’m shouting. I try to lower my voice.

  ‘The week before is always the worst. The week before my period.’

  She looks visibly relieved. She is thinking, ‘Oh, that again. Hope and her mood swings, hormonal, always been a bit overly sensitive.’ And I want to stand on the bench and rip my clothes off and show her the worst of me, what’s inside me right now crawling to get out. I want her to see me in the garden of remembrance amongst all the pretty flowers. All the ugly things I hide from her – all the weeds that wind their way through me, squeezing the life out of everything. But the tablets must be starting to work, I can feel the weeds but they can’t pull me under today. I carry on and tell her what I need to tell her, what I should have told her before.

  ‘I’ve got PMDD. I’m on tablets. Premenstrual Dysphoric Disorder. I have to say it slowly because sometimes I get the D bits mixed up. These tablets, I think they’re working. I think I’m going to be alright,’ I tell her. I feel like the parent. She looks terrified. Acronyms are dangerous, they’re much scarier than real words. ‘Premenstrual Dysphoric Disorder,’ I repeat, wondering if the words sound any better than the acronym.

  ‘What the bloody hell is that?’ I can see all the terrifying words racing through her mind. Cancer? Life threatening? Dying? Tablets? Hospital? Surgery? Gynaecologist?

  ‘It’s sort of like PMT but much worse, so much worse, but that’
s the quick and easy way to explain it.’ And as soon as I’ve said PMT, the panic visibly shrinks from her eyes, and she looks relieved again. But it isn’t as straightforward as I’ve made it sound.

  ‘I get angry, violent, aggressive, irrational and can’t see or hear or realise what I’m doing or saying. Sometimes I don’t even remember what I’ve said. I don’t even see it the next day or the day after sometimes. I only see it when my period turns up – it’s like something bursts or clears and I see it all then – especially if there’s damage, like in my room, or words I’ve said. The words come back to me, late at night, when I’m trying to sleep. Then it all comes back to punch me in the face.’ I try to put it into my own words, rather than the formal language on the leaflet. ‘I can’t concentrate on what people are saying, sometimes I don’t even hear them,’ I tell her.

  But it isn’t enough. There’s more.

  ‘I was on the ferry. It was chucking it down and I needed to get away from their laughing and celebrating and being disgustingly happy in their success. I hated them, even Callie. I know, Mum,I know,so don’t look at me like that. You know how I feel about Callie, that’s why I was so scared. If I felt like that about her, I knew there was something really wrong with me. Please, just let me get this out?’ I have to keep going. ‘I didn’t want to come home and face you, not that this is your fault, it really isn’t. I knew what we’d agreed to and once I told you that would be it – The End. So I went for a walk on the deck and it was raining and raining and it was making me even angrier. My hair wouldn’t stay out of my eyes and I was crying too and I climbed up onto the safety rail. I was screaming and shouting and crying and swearing and then I wobbled and someone – Riley – grabbed me and pulled me down. He isn’t a hero, actually he’s a bit of an arse, but he did save me. That’s who he is and that’s how we met.’ I look up at her. ‘That’s the truth. All of it, this time.’

  ‘But you weren’t actually going to do something stupid, were you? Were you really going to do that?’ She can’t bring herself to say suicide.

  ‘No.’ I tell her the truth. ‘I was raging but I wasn’t suicidal, I promise. But it’s just I can’t be sure of anything in that week: what I’m doing, where I’m going, if I’m safe or not. It’s a bit like being Alice in Wonderland, everything looks the same but it’s all changed, including me,’ I try to explain.

  ‘You don’t ever have to feel like that again. Nothing is too big or too awful that we can’t deal with it, together. I know you think that you’ve run out of choices, but you haven’t. You’re right at the start of everything and part of the adventure is not knowing what’s going to happen.’ She crushes me with her body, as if she can pour all her love into me. ‘And whatever happens, Hope, I will be there with you, every single step of the way.’ She kisses me hard on my cheek. ‘You are strong, smart and more than capable. I know it.’

  I feel her heartbeat and I let go of something. I don’t know what exactly, but something leaves me. We sit and breathe in the strongly scented air as all the birds start singing.

  Nonno is out of hospital in time for my first choir rehearsal on Monday night. He sits down slowly on the back pew, takes his hat off, smoothes his hair and then places the hat on the seat next to him. Mum forced him to wear a coat, despite his protests, but a British summer is not quite the same as an Italian one. He gave in and was wrapped up and was probably sweating before we even left the house. I join Mum and the others for the warm-up.

  When Nonno holds up one hand, it means I can hear you, you’re hitting that back wall. His seal of approval means more to me than I had thought it could. I can’t take my eyes off him as I sing, like I have to keep checking him. I’m so glad that he didn’t go home: the doctor wouldn’t let him fly back yet. I get him for a bit longer and this time I’m not going to ruin it.

  I raise my voice and feel it settling down around me like a blanket. Mum sneaks her hand into mine, out of sight of the others, and gives it a tiny squeeze and for a moment I forget everything else and just let the music hold me. Nonno starts singing at the back of the church. I can see his lips moving and, even though I can’t hear him, I know he’s with me.

  When we get back from choir Nonno offers to walk Scout and Mum seizes the moment. I think Mum’s decided it’s up to me to tell him but I can only just cope with her reaction for now. All these secrets – I thought we were such a straightforward family. I guess there’s no such thing.

  ‘I’ve been researching what you told me and talked to a few people at work and I’d like you to see someone. We can see her together if you like, or you can go on your own, whatever you want. She’s called Dr Dee and…’ Mum stops when she sees my smile.

  ‘My GP recommended her. That’s who I’m on a waiting list to see.’

  ‘Oh, right, well I guess the field isn’t that big for PMDD. I mean, I’d never heard of it before, I’m ashamed to say.’ Mum carries on, tucking my hair behind my ear. I can sense she wants to reach out and hold me. ‘There’s online groups you can join and support groups and I know I can’t fully understand what you’re going through, but I can listen. If it doesn’t freak you out too much we can synch our cycles,’ she suggests, which makes me burst out laughing.

  ‘How?’

  ‘I thought you’d already know, Ms Smarty Pants. Through our Clue accounts. Then I’ll know … you know, where you are in the month and that kind of thing.’

  ‘You’ve joined too?’

  ‘Should have done it ages ago.’ She throws it off as nothing but once again she’s surprised me.

  ‘Thanks, Mum.’ I kiss her on her cheek and she grabs the opportunity and holds me tight.

  ‘I can’t believe you’ve been going through this by yourself, making appointments to see doctors and getting help. I wish I’d known. I wish you’d felt you could tell me.’ She sounds hurt. ‘I thought it was something else, I thought it was,’ she pauses before she says his name, ‘about Dad.’

  I shake my head. ‘I wish people would stop thinking everything is about Dad. I mean, I know it should be but sometimes it isn’t.’

  She nods her head, like she gets it. ‘You’re so brave.’ I can hear the pride in her voice.

  I think about all the kids on Pan Ward. That’s what I see when I hear the word brave – bandages and blood – but maybe you don’t need to see brave to know it’s there? Maybe brave isn’t what I thought it was.

  ‘What happened? What’s gone wrong?’

  ‘Complications,’ Pryia says.

  ‘I thought Kofi was in recovery, I thought he was getting better?’

  ‘He developed multiple complications. His mum told me he went into septic shock and respiratory distress while we were all at choir last night,’ she croaks, her voice breaking a little. She’s trying not to cry. I don’t know what septic means.

  We stand in the corridor in silence, watching people going about their business as if it’s any old Tuesday morning. Nurses, doctors, consultants, cleaners, patients, parents, all walking, talking, coming, going, and we just linger there, leaning against the wall as if it can hold us up.

  ‘They’ve done everything they can. It was working, but his body hasn’t reacted how they thought it would. His burns are…’ she runs out of words.

  I can’t believe there’s nothing they can do. He’s eleven. Eleven.

  ‘They put him on the ECMO machine, like an artificial lung, but it didn’t work. His heart failed and then his other… his other organs failed too. He’s on the ventilator but…’ She can’t carry on. ‘His mum’s asked if we’ll sing to him…’

  I get ready to say yes, of course, but she shakes her head.

  ‘Wait, Hope. Just wait a minute. You can’t just say yes, alright, a lot of people can’t handle this.’ She pauses. ‘Come on, let’s talk outside.’

  I follow her down the stairs into the garden. Why do people keep going to the garden to talk? You can’t exactly escape from the hospital by stepping outside, it’s still there.

 
; She sits down on a bench and waits for me to join her. I’m starting to hate this bench.

  ‘It’s called an end-of-life event. Some parents ask us to sing to their children when they’ve … when they come to the end.’ She struggles to get the words out.

  All I hear is END. THE END in capital letters. My heart changes rhythm. My heart relocates to my throat. There’s a rapid boom, boom, boom as if I’ve be given a shot of adrenalin. Dad and Nonna’s faces flicker in front of me.

  THE END.

  ‘How can he be at his end?’ I ask in disbelief. She doesn’t have the answers.

  We are quiet for a while, before going back. ‘I can do this,’ I say with confidence I don’t really feel.

  ‘Don’t say yes to something that you might not be able to cope with, please.’

  What does she want us to sing to him?’ I ask, as we walk back up to ICU.

  ‘Shouldn’t you check with your mum first? She might say no.’ Pryia hovers on the stairs.

  ‘She’ll say yes.’ I know Mum will understand and want me do this. Pryia follows me reluctantly.

  I think back to Fatima and the organ-donor conversation, how she warned me time wasn’t on her side. There’s no time now. I open the door to Kofi’s room. Mum’s already in there with Nikhil, Owen is sitting next to Kofi’s mum, holding her hand. They’re waiting for us.

  We form a semi-circle by the bed. The nurses seem to retreat, melting away into the background. The room is quiet, apart from the sound of the ventilator huffing as we start to sing. I look at Kofi’s face, his skin, his black lashes resting on his cheeks, his hair gently starting to curl over his ears and his chest moving up and down. I scan him for signs that he can hear us. I move closer to him. I wish it were just him and me.

  But now I’m here

  I’m in the room

  And I will sing

  goodbye

  This time.

  I can see his lips beneath the oxygen mask. I reach out and touch the soft skin on his face, the only part of him not red or white, not burned or damaged. I join in with the chorus, determined to sing the notes long and loud as we say goodbye.