The Mummyfesto (42 page)

I reached out and squeezed his hand. He squeezed mine back. It was the best we could do for the moment.

And all the time Oscar lay there. His face covered with a ventilation mask, which, as far as I could see, was sucking the life out of him, not into him. Because Oscar without words, Oscar without a cheeky grin, Oscar without a constant stream of jokes was just not Oscar at all. Sometimes, during the bits and pieces of sleep I managed to get on the put-you-up at night-times, I dreamt that our
Oscar was still at home. Still exactly the same as before. It was interesting because even in my dreams, I didn’t imagine him not having SMA, just not having pneumonia. I wasn’t greedy. I didn’t want it all. I simply wanted back what I’d had up until a couple of weeks ago: a little boy with an incurable disease but not a life-threatening illness.

It was only when I brought myself back to the present and looked afresh at Oscar that I noticed his lips appeared to have gone a bluish colour. The machine that measured Oscar’s oxygen levels bleeped. I called a nurse. Rob called too. Within seconds nurses and doctors were rushing to his bedside. Somewhere amongst the commotion I heard myself crying out ‘no’. A second later my head was against Rob’s T-shirt as he pulled me to his chest as if trying to muffle the sounds of my sobbing so he didn’t have to hear it. So it didn’t break through his defences. And just for a moment I wanted him to let me in to wherever it was he was. A place where this wasn’t happening. Where I too could shut it all out.

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 the 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.’