by Nathan Filer
Then a really funny thing happened. Do you remember Steve? I only mentioned him that once. He was the one who gave me the teaching session on this computer. I said that I probably wouldn’t mention him again. Well, he came into the office next, and the girl turned to him and asked, really hesitantly, whether or not patients could look in the dictionary? That is how she said it too. She said ‘Um, um, is it appropriate for patients to borrow the dictionary Steven?’
And you’ll never guess what he did. He stepped past her, and in one move he threw the dictionary back through the air like a rugby pass, right into my hands. And at the same time he said, ‘What ya askin’ me for?’ He said it just like that. He said, ‘What ya askin’ me for?’
Then he turned to me and winked. But it wasn’t even a quiet wink, because he made a little clicking noise with his tongue as if to say, you and me kiddo, we’re in this together.
Do you know what I mean? I don’t know if I am explaining it very well. But you can see why it’s funny. It’s funny because the girl didn’t know whether or not I could even look in the dictionary. And then it was doubly funny because Steve made her look really stupid, by being all casual about it.
But the really funny thing. The thing that makes me laugh out loud. The really funny thing is that Steve made that little clicking noise with his tongue, and winked at me, as if to show that he was on my side or something. Except you’re not on my side, are you Steve? Because if you were on my side you just would have handed me the dictionary like a grown-up. Because if you make a big fucking gesture of it Steve, then it becomes a big fucking deal. But that is what these people do – the Steves of this world – they all try and make something out of nothing. And they all do it for themselves.
Simon had hypotonia. He also had microgenia, macroglossia, epicanthic folds, an atrial septal defect, and a beautiful smiling face that looked like the moon. I hate this fucking place.
spoon fed
Mum pulled open the quilt at the entrance and peered inside, ‘I’ve forgotten the password again.’
‘You can’t come in then.’
‘Will you tell me it one more time?’
‘Nope.’ I pulled the quilt back against the radiator, gripping it tightly with my fist.
‘Bully.’
‘I’m not a bully, I’ve told you once already.’
‘Super Mario?’
‘Close.’
‘Hmm. What’s his girlfriend called?’
‘Princess Peach.’
‘Ah, yes. That’s not it either, is it?’
‘Uh-uh. Actually, she isn’t Princess Peach in this game. And you’re getting warmer. Sort of.’
‘Cryptic clues, eh?’
‘What does cryptic mean?’
‘It means if you don’t tell me the password I’ll cry.’
I opened a small gap and watched as she made her pretend sad face, with bottom lip trembling. It was hard not to laugh.
‘Oh, charming. Here I am, pouring my heart out, and my own son and heir is smirking at me.’
‘I’m not smirking.’
‘What’s this then?’ Her arm crept in, through a gap I hadn’t noticed. She did that thing when you make a bird’s beak with your hand, pecking up my arm until she found my face. She propped up the corners of my mouth. ‘Ah-ha. I knew it!’
It’s good being a bit ill when you’re a kid, isn’t it?
It’s better if you go to a proper school, because then when you stay home for the day it’s a treat. If you have your lessons at home anyway, there isn’t anywhere to go. Unless you’re allowed to build your own den.
‘Okay,’ I said. ‘I’ll give you a clue.’
‘Go on then.’
‘I’m playing it right … now.’
I let the entrance fall open and quickly picked up my Game Boy Color. Mum tilted her head, squinting at the cartridge. ‘Donkey Kong!’
‘You may enter.’
It was really just the space between the back of the couch and the wall, but I stretched a quilt over the top, tucking it behind the radiator. It was nice to hide away in there, playing games or watching TV through the gap beside the curtains.
Mum crouched on all fours and crawled inside. ‘Show me how to play it then.’
‘Really?’
‘What, you don’t think mummies can?’
There wasn’t much room, but that made it better in a way. It was cosy. ‘Hold it like that, with your thumbs on the buttons. See him at the bottom?’
‘Uh-huh.’
‘He’s Mario. You need to make him climb to the top, without the barrels hitting you.’
‘What’s at the top?’
‘His girlfriend.’
‘Not the princess?’
‘She’s in other games. It’s started, you need to concentrate—’
When the first barrel hit her, she said it wasn’t fair because she was about to get good.
‘It’s still your go. You have more than one life. Shall I tell you when you need to jump?’
She didn’t answer.
‘Mum, shall I tell you when to jump?’
She kissed me on the cheek.
‘Yes please.’
I’m not a mind-reader. I can’t tell you what my mum was thinking. Sometimes I worry people might be able to place thoughts in my head, or take my thoughts away. But with Mum, there’s nothing.
‘You’re better than Dad.’
‘Really?’
‘He can’t get past Level One.’
My mum is made of angles, and sharp corners of bone. She isn’t great to cuddle. But she put a cushion on her lap for me to rest my head, and that was comfortable.
At lunchtime she made vegetable stew.
Usually we ate at the table, but this time we took our bowls into the den. I was starting to feel floppy and useless.
‘Try and eat up, sweetheart.’
‘It hurts to swallow.’
She looked in my throat and said my tonsils were still swollen, that she’d make a Lemsip after we’d eaten. She picked up my spoon, and fed me a mouthful, scooping a bit of spillage off my chin like you would for a baby. Then she said, ‘Why more than one life?’
‘What?’
‘In computer games. It doesn’t make sense, having lots of lives. It makes no sense at all.’
‘It’s just the way they are.’
She shook her head. ‘I’m being silly, aren’t I? Shall we play Snakes and Ladders next?’
I opened my mouth, and she fed me another spoonful. It wasn’t a plastic spoon or anything. It wasn’t for babies. It was a regular spoon.
mon ami
He used to burst through the door, waiting at the foot of my bed all wide-eyed and unblinking. Some mornings I wasn’t in the mood so sent him away. I regret that now.
But mostly his enthusiasm was catching, so even if I was half asleep I’d get out of bed to load up the N64, and we’d sit on our beanbags playing Mario 64, arguing over whether Luigi could be unlocked as a character. Then at quarter to seven our dad would come through to tell us we should work hard at school today, and that he was off to earn a crust. That is the kind of thing my dad says. He says, earn a crust. I like it.
The other reason Dad used to come into my bedroom was so Simon and me could do this thing we used to do. What we’d do is listen out for him as he walked across the landing towards my bedroom door. He was easy to hear because he wore heavy steel-toe-capped boots, and because he wanted us to hear him. So he would walk deliberately heavy-footed, and usually say something loud and obvious to my mum like, ‘Bye bye then darling. I’m just going to say cheerio to the boys.’
As soon as we heard him say that, Simon and me would quickly hide behind the door, so when he looked in he wouldn’t be able to see us. He’d step inside pretending to be confused, saying something under his breath like, ‘Where have those boys got to?’
It was stupid really, because by this time Simon wouldn’t be able to stop from giggling. That didn’t matter though
, because we all knew it was just pretend. And it was fun. The most fun thing was at this point Simon and me would leap out from behind the door, and wrestle Dad to the ground.
That is what we used to do when Simon was alive, but now Simon wasn’t alive, I never got up before my dad. At quarter to seven he would still come into my room to find me lying awake, unsure of how to begin. That must have been hard for him.
He came in every morning anyway, to sit beside me for a few minutes and just be there.
‘Morning mon ami, you okay?’ He ruffled my hair, in that way grown-ups do to children, and we did our special handshake. ‘You going to work hard for Mummy today?’
I nodded, yes.
‘Good lad. Work hard then you can get a decent job and look after your old pa, eh?’
‘I will mon ami.’
It started in France when I was five years old. This was our only holiday abroad, and Mum had won it in a magazine competition. It was something to be proud of, first prize in a True Lives writing contest, eight hundred words or less about what makes your family special. She wrote about the struggles and rewards of raising a child with Down Syndrome. I don’t suppose I got a mention. The judges loved it.
Some people can remember way back to the beginning of their lives. I’ve even met people who say they can remember being born.
The farthest back my mind can reach puts me standing in a rock pool, with my dad holding one of my hands for balance, in the other I’m clutching my brand new net, and we are catching fish together. It isn’t a whole memory. I just keep a few fragments; a cold slice of water just below my knees, seagulls, a boat in the distance – that sort of thing. Dad can remember more. He can remember that we talked, and what we talked about. A five-year-old boy and his daddy chewing the cud over everything from the size of the sea to where the sun goes at night. And whatever I said in that rock pool, it was enough for my dad to like me. So that was that. We became friends. But because we were in France we became amis. I don’t suppose any of this matters. I just wanted to remind myself.
‘Right then. I’m off to earn that crust.’
‘Do you have to go, Dad?’
‘Only until we win the lottery, eh?’ Then he winked at me (but not in a Steve way) and we did our special handshake again. ‘Work hard for Mummy.’
Mum wore her long nightdress and the silly animal slippers Simon had once chosen for her birthday. ‘Morning baby boy.’
‘Tell me about France again, Mum.’
She stepped into my room and opened the curtains, so that for a moment, standing in front of the window, she became nothing but a faceless silhouette. Then she said it again. Just like before. ‘Sweetheart, you look pale.’
school runs
I think of Mum zipping closed my orange winter coat again, and pulling up the hood again so the grey fur lining clings to the sweat on my forehead and brushes at my ears. I think of it, and it is happening. Hot honey and lemon drunk down in gulps from the mug I once gave to her – no longer special – and a bitter chalky after-taste of ground-up paracetamol.
‘I’m sorry about the other day, sweetheart.’
‘Sorry for what, Mummy?’
‘For dragging you past the playground, with the other children staring.’
‘Were you punishing me?’
‘I don’t know. I might have been. I’m not sure.’
‘Do we have to do it again?’
‘I think so, yes. You have your coat on.’
‘You put it on me. You zipped it up.’
‘Did I?’
‘Yes.’
‘Then we should go.’
‘I don’t want to.’
‘I know that, Matthew. But you’re unwell, and you might need antibiotics. We need to get you seen. Did I really zip your coat up?’
‘But why now? Why can’t we wait until after playtime has finished?’
‘I don’t know. I haven’t worked that out yet.’
I pass her back the empty mug, World’s Greatest Mum. I think of this and I am there again. She’s opening the door, reaching out her hand. I take it, and I am there.
‘No!’
‘Matthew, don’t answer me back. We need to go. We need to get you seen.’
‘No. I want Dad.’
‘Don’t be silly, he’s at work. Now you’re letting all the cold air inside. Stop it. We need to go.’
Her grip is tight, but I’m stronger than she thinks. I pull back hard, and snag at her charm bracelet with the hook of my finger.
‘Now look what you’ve done. It’s broken.’ She bends over to pick up the fallen chain, with its tiny silver charms littering the ground. I push past her. I push her harder than I should. She loses balance, arms flapping like pigeon wings before she falls. ‘Matthew! Wait! What is it?’
In a few strides I’m through the gate, slamming it behind me. I run as fast as I can, but she’s catching up. My foot skids off the pavement, I’m startled by the urgent blast from a speeding van.
‘Baby, wait. Please.’
‘No.’
I take my chance, running across the main road, cutting between a line of cars, causing one to swerve. She’s forced to wait. I round the corner, and the next, and am at my school. ‘Is that you again, Matthew? Hey, it’s Matthew again. Look, his mum’s chasing him. His mum’s chasing him. Look! His mum’s chasing him!’
I am ahead, and she is chasing. She’s crying out for me to stop. She’s calling me her baby. She’s calling me her baby boy. I stop. Turn around. Then fall into her arms.
‘Look at them. Look at them. Get a teacher, someone. Look at them.’ I am lifted from the ground, held by her. She is kissing my forehead and telling me that it will be okay. She’s carrying me, and I can feel her heartbeat through my stupid hood.
‘I’m so sorry, Mum. I’m so sorry.’
‘It’s okay baby boy.’
‘I miss him so much, Mum.’
‘I know you do. Oh, my baby. I know you do.’ She’s carrying me, and I can feel her heartbeat through my stupid hood.
Children must be accompanied by an adult AT ALL TIMES
In Bristol there is a famous bridge called the Clifton Suspension Bridge. It’s a popular hangout for the suicidal. There is even a notice on it with a telephone number for the Samaritans.
When my mum first left school, before she met Dad, she worked doing paper filing at Rolls-Royce.
It wasn’t a happy time because her boss was a horrible man who made her feel stupid and worthless. She wanted to quit, but was too worried to tell Granddad because he had wanted her to stay at school, and having a job was a condition of her leaving.
She was riding back on her moped one evening, but when she reached home she didn’t stop.
‘I kept going,’ she told me. She perched on the edge of my bed in her nightgown, having woken me in the middle of the night to climb in beside me. She did that a lot.
‘I had nothing to live for,’ she whispered.
‘Are you okay, Mummy?’
She didn’t know that she was going to the suspension bridge, but she was. She only realized, when she couldn’t find it.
‘I was lost.’
‘Should I get Dad?’
‘Let’s go to sleep.’
‘Are you sleeping here tonight?’
‘Am I allowed?’
‘Of course.’
‘I was lost,’ she whispered into the pillow. ‘I couldn’t even get that right.’
dead people still have birthdays
The night before my dead brother should have turned thirteen years old I was woken by the sound of him playing in his bedroom.
I was getting better at picturing him in my mind. So I kept my eyes closed and watched as he reached beneath his bed and pulled out the painted cardboard box.
These were his keepsakes, but if you’re like Simon, and the whole world is a place of wonder, everything is a keepsake. There were countless small plastic toys from Christmas crackers and McDonald’s Happy Meals. T
here were stickers from the dentist saying, I was brave, and stickers from the speech therapist saying, Well Done, or You are a Star! There were postcards from Granddad and Nanny Noo – if his name was on it, it was going in his box. There were swimming badges, certificates, a fossil from Chesil Beach, good pebbles, paintings, pictures, birthday cards, a broken watch – so much crap he could hardly close the lid.
Simon kept every single day of his life.
It was strange to think of it all still there. In some ways it was strange even to think of his room being there. I remember when we first got home from Ocean Cove, the three of us stood in the driveway, listening to the little clicking sounds as the car’s engine cooled. We stared at the house. His room had stayed put, the first-floor window, with his yellow Pokémon curtains. It hadn’t the courtesy to up and leave. It stayed right where we’d left it, at the top of the stairs, the room next to mine.
Hugging a pillow to my chest and keeping my eyes shut tight, I could see him searching through his memories to find the most important one – a scrap of yellow cotton. It was this he was first wrapped in as a tiny bundle of joy and fear, and it became his comfort blanket. At seven, eight, nine years of age – he always had it with him, forever carrying it around. Until the day I told him that he looked like a baby. I told him he looked like a little baby with his little baby blanket, that if he wasn’t so thick all the time he’d understand. It disappeared after that, everyone proudly accepting he’d outgrown it.
I lay listening to him, sleep drifting back over me as he climbed into his bed. Then breaking through, not enough to wake me, but at the very edge of my awareness, another sound – Mum was singing him a lullaby.
Spring sunshine painted pillars of white across my carpet.
It was Saturday, which meant breakfast around the table. I put on my dressing gown, but didn’t go downstairs straight away. I wanted to check something first.
This wasn’t the first time I’d been in his room.
Dad hadn’t wanted me to feel afraid or weird about anything, so after I got back from staying with Nanny Noo, we went in together. We shuffled around awkwardly and Dad said something about how he knew Simon wouldn’t mind if I played with his toys.