by Green, Linda
When I looked up finally, everything appeared to be under control again. Oscar was still there. He was clearly still breathing. But the look on the doctor’s face told me all I needed to know.
We were ushered into a side room. You are only ushered into a side room for one reason. I knew that. We sat down. I looked at Rob. His eyes were still vacant. I wanted to slap him around the face in order to bring him back to me. Because I needed him right now. I needed him so much.
‘I won’t beat about the bush,’ the doctor said, peering at us over the top of his glasses. ‘Oscar’s oxygen levels have fallen again. As we suspected, his body is not responding to the antibiotics. And as I explained before, because of his SMA, the muscles in his respiratory system are exceptionally weak and quite unable to fight pneumonia. He’s done incredibly well to get this far, but I’m afraid there’s nothing more we can do that we’re not doing already. I feel I should warn you that his condition will only deteriorate from this point onwards. I’m very sorry, but he may only have a matter of days to live.’
All the times I had thought about this moment over the years, I’d imagined myself shouting, screaming hysterically, beating my fists on the walls. But actually, when it came, it was a quiet moment. The world stopped. I was aware of the ticking of the clock on the wall, but I knew that time was only progressing in the other world, the one I had just stepped out of. Our world was still and flat and silent. My eyes were hot with tears. I could feel a huge chasm opening up inside me. And I knew at that moment that what I needed to do was to get Oscar out of there. Get him to a place he could be at peace.
‘So there’s absolutely no chance …’ The doctor shook his head.
‘I’m so sorry,’ he said again. ‘We will do everything we can to make sure he’s not in pain.’
‘I’d like him to go to the children’s hospice,’ I said. ‘It’s nothing personal. I work there. It’s where I want him to be.’
The doctor nodded. ‘I understand. We can arrange that for you if you’re sure that’s what you want.’ He looked at Rob, who still hadn’t said anything. Rob shrugged. The doctor got to his feet. ‘I expect you need some time alone. Take as long as you need.’ He left the room, pulling the door shut quietly behind him. I wished he’d slammed it. Anything to break through the silence which enveloped us. Rob stared straight ahead at the wall, expressionless. I stood up and walked over to him. Stroked his head, screwed up my eyes and started to cry.
‘It’s OK,’ Rob said, clutching my hand.
‘No,’ I replied, shaking my head. ‘It’s not OK. Did you hear what he said? Oscar’s going to die.’
‘We don’t know that for certain,’ said Rob. ‘Doctors can get it wrong. They often do. Maybe it’s just going to take longer for the antibiotics to work on him. Maybe they need to give him more time.’
‘Rob, you’re not listening. There’s nothing more they can do.’
He looked up at me sharply. ‘And you’re just going to accept that? You’re the one who goes on about fighting for what’s right, for what you believe in.’
‘I’ve fought,’ I said, wiping my eyes with the back of my hand. ‘I’ve fought so long and so hard for him since the day he was diagnosed, but all that’s left to fight for now is where he dies. And I am not having him dying here, surrounded by machines in a cold, sterile hospital.
‘There’s only one place I want him to be. Because if he goes to the hospice, we can all be there together and we can have time and space and privacy, but we can also have love and support, all the support we need, that Zach will need. We might just be able to get through it there. Here, I don’t think we stand a chance.’
I sat down on Rob’s lap to stop my body shaking, wiped my nose on my sleeve because I didn’t have a tissue. It was then I realised it wasn’t my body shaking at all. I put my arms around Rob’s neck. Pressed my face next to his.
‘I’m so scared,’ he whispered. ‘I’m so fucking scared.’
‘I know,’ I replied, shutting my eyes. ‘Me too.’
I sat with Oscar. Tracing the veins in his arm with my finger. Trying not to think about the blood running through them. And the day when it would stop running. His eyes were open, although how much he was able to take in, what with his fever and the drugs he was on, I wasn’t sure. I needed to tell him, though. I needed to let him prepare.
‘We’re going to take you somewhere you’ll like tomorrow, love. We’re taking you to Sunbeams. They’re going to look after you there. We’ll all be going, even Zach. They’re going to take good care of you there, love. Very good care.’
For a second I thought I saw him smile. Not a big smile like he used to do, but a tiny little upturn at each corner of his mouth. Maybe I didn’t. But maybe I did.
He understood what it meant. I was sure of that. He’d always understood a hell of a lot more than people gave him credit for. I missed him. I missed him already. I couldn’t begin to imagine how much I’d miss him when he was actually gone.
I took Zach to the bench on the canal to tell him. I hadn’t wanted to do it in an enclosed space. I wanted him to be outdoors. To have the sound of the wind and the stillness of the water to cushion him and fresh air to fill his lungs when he needed to take a big gasp. As it turned out, I didn’t even have to tell him. He already knew.
‘Oscar’s going to die, isn’t he?’ His eyes were wide, his face open as he looked at me. I brushed an auburn curl back from his forehead. He was too young, far too young to be so wise.
‘Yes, love. I’m afraid he is.’ He nodded. His bottom lip started to tremble. ‘The doctors have done everything they can, sweetheart. It’s just his muscles not being strong enough to fight it because of the SMA.’
‘But can’t they zap him with something to make him better? Or give him some big medicine that will make his hair fall out? I wouldn’t mind if his hair fell out. At least I’d still have a brother.’
I pulled him to me, any thoughts I’d had of not crying gone in an instant. He’d always asked lots of questions about the children at the hospice. He was well versed in dying children. Too well versed, maybe.
‘It’s not like other diseases, sweetie. The scientists haven’t worked out how they can stop it yet.’
‘Well when I grow up,’ said Zach, taking a huge gulp of air between sobs, ‘I’m going to be a scientist and I’m going to find out how to make children like Oscar better.’
‘That would be a brilliant thing to do, love. But I want you to remember that you are the best big brother anyone could ever have. And Oscar loves you to bits, OK? We all do.’ Zach stared out from my arms at the canal, I could almost feel the ache inside his head as he tried to make sense of everything.
‘When is he going to die?’
‘We don’t know exactly. But it will be soon. That’s why we’re taking him to Sunbeams tomorrow morning. We think that’s the best place for him to be. For all of us to be.’
Zach dried his eyes on his sleeve. ‘So I can come too?’
‘Of course you can.’
‘What about school?’
‘You don’t have to go this week.’
‘But everyone has to go to school.’
‘Normally, yes, but not this week. This week you’re going to be with us. I’ll phone Mrs Cuthbert on Monday morning to tell her. She’ll understand.’
Zach nodded, but still didn’t seem sure. It broke my heart that the boy who worried too much now had even more to worry about.
‘He won’t be able to go on the playground with me this time, will he?’
‘No, love,’ I said. ‘We’ll find nice things for him to do inside, though. Nice places for him to be.’
‘OK,’ said Zach. ‘I’ll go and pack my things.’
I put gel on Oscar’s hair before we left the hospital. He never went to Sunbeams without sticky-up hair.
‘There,’ I said to him when I finished. ‘You’re ready now.’ I wasn’t ready though. I was so not ready.
I went with him in t
he ambulance. His body appeared to have grown smaller by the day, surrounded as it was by so many machines. His face barely visible now beneath the mask. I talked to him all the way. Silly little things, anything I could pull out of the bag marked ‘memories’. The bag which would soon be all we had left of him.
We pulled up outside Sunbeams. The ambulance driver came round to help his colleague get Oscar out. He lowered his eyes as he passed me. I knew he meant it kindly, that he was trying to be sensitive, but I still wanted to shout at him, ‘He’s not dead yet, you know.’ It felt like we were in a funeral cortège. That they were carrying a coffin instead of a little boy. And then I looked up and saw Rob and Zach standing solemn-faced next to the car. Our car. Our specially adapted wheelchair-accessible car. And I realised that we would have to sell it afterwards. Because we would not need it any more. And because I would not be able to bear to go in it once Oscar was gone.
I managed to dredge up a smile for Zach from somewhere deep inside. Albeit a rather watery one.
‘Come on, sweetheart,’ I said, taking his hand. ‘Let’s go and get Oscar comfortable.’
When we stepped inside it was instant. The love hit me like the heat does when you step off a plane into a tropical climate. It enveloped us, instantly easing the stresses and strains of a long and tiring journey. My muscles relaxed a little, the tension was sighed away. Marie came forward and hugged me, the tenderness in her welcome sand-papering the edges off the fear.
‘Come and make yourselves at home,’ she said. I turned to see the tears streaming down Rob’s face. And I was relieved, so very relieved that at last they had found a way out. I took Rob’s hand. Marie put her arm around Zach’s shoulders.
‘Now, I’ve got an important job for you,’ she said. ‘While Mummy and Daddy get settled and I get Oscar comfortable, could you go with Julie here and help her choose some special things for Oscar’s room? She needs to know what toys and bits you think he’d like.’
Zach nodded. He went with Julie down the corridor. I squeezed Rob’s hand. He was going to be OK.
I turned back to Marie.
‘Would you like to be with Oscar while I take him off the ventilator?’ she asked.
I nodded.
‘Come through with me to his room then, and we’ll do it as soon as Julie’s taken Zach to play.’
Ten minutes later I was looking at a little boy lying on a bed. A boy I almost didn’t recognise. There were no masks, machines or tubes. It was just him. Oscar. He’d come back to us. I felt a brief spurt of elation before the reality flooded in. The laboured breathing. His bloated abdomen sticking out below his sunken chest. The glazed look in his eyes. He would not be with us long. But while we had him, he would be made so very welcome.
26
JACKIE
I found her sitting in a crumpled heap in front of the cupboard under the stairs, her wet knickers around her ankles. Tears were seeping silently from the corners of her eyes.
‘It’s OK,’ I said, crouching down next to her and pulling her to me. ‘I’m here now. Everything’s OK.’
Mum looked at me, the skin around her mouth twitching. ‘I couldn’t find toilet,’ she said. ‘I couldn’t remember which door it were. I thought it were in there.’ She pointed to the cupboard under the stairs. Mum had lived in this house for fifty-odd years. She had never had a downstairs toilet.
‘No, it’s upstairs, next to your bedroom. Never mind, let’s get you cleaned up.’ She nodded and shut her eyes for a moment as if she couldn’t bear me to see her shame. My mother, who had no doubt had to clear up plenty of my ‘accidents’ in her time, now having to be cleaned up by her own daughter.
She was quiet as I helped her get changed. Quiet and thoughtful rather than quietly vacant. She looked up at me when we were finished and took hold of my hand.
‘I don’t know where owt is any more,’ she said. ‘Not even in me own home. It don’t feel like me home now. Not really. It’s too big for me. I’m scared, you know. Scared of getting lost in me own home.’
She looked old and frail and bewildered. She looked lost.
‘How about we find you somewhere new to live?’ I said. ‘Somewhere you’ve just got one room with a little bathroom. Where you’ll get your meals cooked and there’ll be company for you and where there’ll always be someone there to help you when you need it.’
She shrugged. She really wasn’t up to making decisions any more. Life had come full circle. It was my turn to look after her. To do the right thing. Even if she didn’t understand what that was.
I’d known the performance was going to be good. Actually, beyond good. But it was only when I saw Will up there on stage, playing the part of the bully, that I realised just how good it was.
The audience of Year Nines was silent, none of the usual giggling and fidgeting. They watched intently as Will chose his ‘victim’ and began his calculating reign of terror. Psychological, all of it. He never laid a finger on him. But he coaxed and cajoled his classmates to join in the laughter, to point the finger, to sign up to the silences.
And when, after a sustained campaign of terror and ridicule, the victim didn’t come to school one morning, they watched Will sneer and gloat, crack jokes about what might have happened to him. Until they were called into assembly, that was, and told by the Head what had actually happened to him. And told in no uncertain terms that it must never happen to anyone at that school again. At which point everyone turned to look at Will and he slunk off on his own down the corridor, knowing that this was all his doing. And that nobody would ever allow him to forget it.
Charlotte was crying by the end of the performance. She wasn’t the only one, though, not by a long chalk. Several of the girls in her year had tears streaming down their faces. Only theirs were tears of guilt.
The pupils broke into a spontaneous round of applause. Not the usual behaviour at the end of a PHSCE lesson, albeit a rather unconventional one. Will wasn’t interested in milking the applause, though. He simply went up to Charlotte and gave her a hug. And everyone knew then that things had changed and she wasn’t on her own any more.
I waited at the bottom of the road for Anna to arrive. I hadn’t wanted her to come to the house. Alice would have asked too many questions about where we were going and why. Saying goodbye to people wasn’t one of her strong points. She’d cried on the three or four occasions when one of her classmates had left the school. And that had been because they were moving away from the area. Not because they were dying.
Dying. I still couldn’t get my head around it. Still couldn’t forget the catch in Sam’s voice as she told me on the phone. And the silence at my end as I’d failed miserably to find anything suitable to say. What could you say? It was a mother’s worst nightmare. My own mother had worn the same haunted expression on her face for thirty-two years because of it. The thought of Sam having to go through that, of Zach having to cope with losing a sibling, was so unfair. And so bloody, bloody cruel.
Anna’s silver Polo pulled up on the kerb next to me. I opened the door and got in. We looked at each other. We’d both opted for navy. One stop short of funereal black. We burst into tears at exactly the same moment.
‘I can’t believe this is happening,’ I said as I leant over and hugged her.
‘I know, I feel so utterly helpless. I’m still not even sure if we’re doing the right thing by going. Maybe visitors are the last thing they need.’
‘I did ask her to text me if she changed her mind. If it wasn’t a good time.’
‘I don’t suppose there is such a thing as a good time,’ replied Anna.
‘No. I guess not. But I just want to be there for her. To let her know she’s not on her own.’
‘It sounds like Rob needs a hell of a lot of support too. Sam always said he was in denial about the whole situation. I think it’s hit him hard.’
‘Maybe we could ask Paul and David to help,’ I suggested, ‘take Rob out somewhere to get away from it all. Not now. Afterwards,
I mean.’
Anna’s face crumpled. The usual air of cool, calm togetherness, replaced by something altogether different.
‘He’s gone,’ she said.
‘I’m sorry?’
‘David. He’s left me. Well, actually Will sort of kicked him out. It’s rather complicated.’
I stared at her. Not quite able to take it in. I don’t think she was, either.
‘Why? What happened?’
‘The whole fuss at the hustings. The stuff about the dope. It came from David.’
‘Jeez. You mean he told her on purpose, to smear you?’
She shook her head.
‘No. He told her years ago. When he was having an affair with her.’
My mouth must have visibly gaped open. She managed a weak smile.
‘Oh, Anna,’ I said, ‘that’s awful. You poor thing.’
‘Not really. Not as poor as Sam.’
‘Hey, this isn’t competitive misery, you know. On any normal scale this is massive.’
‘Not really,’ she said. ‘I don’t love him, you see. I haven’t loved him for ages.’
She said it quietly and calmly. The way you would if you were discussing a type of cheese you’d gone off.
‘Oh. I’m sorry. I had no idea.’
‘I did a very good job of the whole sham marriage thing.’
‘And you didn’t know, about the affair I mean?’
‘No. I guess I was too busy with the children. It was when Will and Charlotte were little. That’s why he said it happened.’
I shook my head and blew out a short whistle. ‘Women can’t win, can they? They get slagged off if they’re not putting their kids first and cheated on by their husbands if they are.’
Anna smiled. ‘Shame that can’t be in the mummyfesto,’ she said. ‘It’s a good line.’
‘Why did you stay with him so long?’ I asked.