‘How’s it going, porcupine?’ Sam asks. ‘Another day in paradise?’
I wish.
Sam ran a kebab bar back in Greece, but here in Australia he’s an approved taxi driver for people with a disability. I’m glad he’s my driver. He sings along to 70s music in his cab, and unlike Dad, Sam’s singing is pretty good. But I don’t care about singing today. I need to talk about Nic, and how I’m sorry that I screamed at her concert. And about Mum and Dad, and how hard it is for them to look after me.
But of course I can’t. When Sam looks in the rear-vision mirror, he sees what he always sees: a crumpled, twisted kid with a head that struggles to stay upright. He sees hands that won’t stop clasping, and long threads of drool staining a red school shirt. So Sam keeps driving, tapping his fingers to the music and complaining about the traffic. Like he does every school day. Like absolutely nothing is wrong.
Except absolutely everything is.
By the time we get to school, my lungs are heaving and my vocal cords are primed. If I can’t talk, then I’ll scream. Scream and scream and scream the whole place down.
But then I spy Wendy, our stand-in teacher, at the gates. She has short, army-style hair and stands with her hands on her hips, making the muscles on her arms pop out.
Sergeant Major Wendy.
Her voice punches over the throb of buses waiting to unload. ‘I’ll take Ava,’ she bellows as Sam lowers me down on his ramp.
My stomach swirls.
Squish, clap, clench.
I don’t want you to be our teacher. I want Hayley back.
But I’m helpless in my wheelchair – the classic sitting duck. If only I could unclasp my hands and wheel myself away.
That’s not going to happen.
Instead, I grimace on the inside as Wendy marches my chair down to our classroom.
Brandon’s pacing the floor when we get there, his sound-cancelling headphones firmly on his ears. He flaps his hands in front of his face, like his tongue is on fire, while Derek sits at his desk, saying, ‘Yes, please’ to everything. Freya’s white-blue eyes just stare blankly at the ceiling.
No-one’s in the time-out room. Not yet.
‘Sit down, thank you, Brandon,’ says Wendy, her voice too loud. Our classroom is a jumble of pictures and crazy paintings, with anything breakable placed up high. The lights are too bright, the carpet too swirly, and the air too thick with the smell of antibacterial wipes.
Wendy locks the classroom door so Brandon can’t escape, and then sits on a small stool with wheels, skidding over to show us each a laminated card. The stool’s wheels roll like thunder over the lino.
The first card has a black-and-white picture of a stick-figure person waving their hand. It looks sort of like the ‘men’ or ‘women’ symbols you see on toilet doors, except instead of the person having their two arms stuck out straight, one hand is raised and waving.
‘Hello!’ belts out Wendy. ‘Hello, everyone. What do you say, Brandon?’
Brandon takes the card and gives it back to her.
‘That’s right, Brandon. Hello.’ Wendy gives him a lolly.
‘Yes, please,’ says Derek.
The cards are coming closer. My twisted fingers won’t unclench.
‘How about you, Ava? Hello, Ava. How are you today? Happy?’ She’s showing me a card with a yellow smiley face. Wendy’s morning coffee is stale on her breath. ‘Use your words. Ha-ppy, Ava?’ repeats Wendy, pushing the card close to my face.
I’m not blind.
Hayley, our regular teacher, understood that I couldn’t unclasp my hands. She never made me pick up things, and would talk in a quiet singsong voice. Hayley tried different ways of helping me, even borrowing a Dynavox, a heavy white box with a screen showing lots of symbols. She spent ages loading the Dynavox with different pictures and pages, but the screen needed to be pressed, something my twisted fingers couldn’t do.
So Hayley returned it, and told me not to worry. She said that one day there’d be a better way, but in the meantime we’d just have to make do.
But Wendy’s nothing like Hayley. She doesn’t understand about my useless hands. She keeps shoving the card closer and closer. My arms throb – I can’t move them. A strangled scream escapes.
‘I see. In one of our moods today, are we?’ barks Wendy. ‘Let’s try Derek. Good morning, Derek. How are you?’ She waves the ‘happy’ card in front of Derek. He grabs it and gives it back to her. ‘Yes, please,’ he says.
Wendy erupts. ‘Well done, Derek. Good talking, Derek!’ She pushes a lolly into his outstretched hand, and keeps going around our group.
Everyone except me gets a lolly.
We move on to a storytime session, with lots more card-waving and squealing from Wendy.
None of the cards show anything I want to say. Who cares what colour the lion is in the Dear Zoo book? Who cares where the monkey is? I, for one, want a proper book, not one for toddlers. And two, I need proper cards that say useful things like, ‘Nic, I wish I were a better sister’ and ‘Mum and Dad, I’m sorry I’m so much work’.
But cards like that don’t exist.
Don’t scream, don’t scream, don’t scream.
I don’t want to go in the time-out room. So, instead, I sag in my chair, hot tears welling in my eyes.
I’ll never be able to say what I want to say.
After school that afternoon, Nic tells Mum that she’s organised a sleepover for the weekend. Mum’s only half-listening, concentrating on reading my communication book from school.
‘Mum!’ Nic repeats. ‘Can Ava go to Henry’s on the weekend?’
Our neighbour Henry and his wife used to look after me when Mum and Dad got stuck. But Henry’s wife died a few months ago, and Henry’s too frail to care for me on his own.
Mum’s frowning at something Wendy’s written in my communication book, presumably about the cards and me not participating in class.
‘Mum?’
Mum sighs and closes the book. ‘Nic, Ava’s your sister. Your friends can still come over while she’s home.’
Nic rolls her eyes. ‘Yeah right,’ she mutters.
‘How about Dad and I feed Ava dinner while you and your friends watch a movie?’ Mum suggests. ‘We’ll be out of your way and by the time you’re done, she’ll be all tucked up in bed.’
Bedtime straight after dinner? I’m not five, Mum!
Nic agrees and the sleepover is on.
The following Saturday, I watch all of Happy Feet, and then Finding Nemo, while Mum and Dad prepare the house for Nic’s friends. I’ve watched each of these movies at least a thousand times, but it’s not like I can sit Mum and Dad down and say, ‘Stop treating me like a baby.’
Mel’s been Nic’s best friend forever, so she knows about me, but Nic’s invited two other girls and is eager to impress them. She wants any sign of me to be hidden – every surface wiped and disinfected in case I’ve dribbled on it.
I’m not contagious.
When the Finding Nemo credits roll, Dad comes in and turns off the TV. He smells vaguely of bleach and he’s holding a bottle of Windex and a dirty rag. ‘You have to be good tonight, okay? Your sister … well … you know how she is lately.’
I’d nod if I could, but I can’t. Instead, I will myself to behave. I won’t let you down, Nic. Not this time, I promise.
Not long after I’m squirrelled away into my room, I hear Nic’s friends clattering down the hall. They laugh and giggle as they head towards the TV room. I’m right about the movies. Most of them, anyway. They read out the titles, trying to decide which one to watch first: Pitch Perfect, Mamma Mia! or some scary-sounding horror movie that one of the new girls insists they watch. Once they’ve decided, the music starts, and Dad opens my door.
‘Homemade pizza?’ he asks. He helps me to the kitchen bench while Mum cuts a sl
ice. My mouth waters. It looks delicious. Pizza is one of the foods that are hard for me to swallow, so Mum’s jaw is tight as she feeds me the first slice. Her eyes watch my mouth, and when I chew and swallow without choking, she smiles. I smile back. The pizza’s delicious.
‘So far so good,’ Mum whispers.
I’m not sure if she means me and the pizza, or Nic and her friends. Our last pizza dinner ended up in Emergency, where Mum and Dad made each other promise we’d never order it again. But that was a while ago now, and I guess they’re hoping the homemade version won’t be such a problem.
Dad’s mouth bulges with cheese and salami. Pizza’s his favourite food, after Maltesers and coffee ice-cream. He’s already finished three slices, and is reaching for a fourth, when Mum softly shakes her head. Dad’s cholesterol is sky-high, and he’s supposed to be cutting down on fatty foods. Dad grins and pats the slight roll of his tummy. ‘Years in the making,’ he says, throwing me a wink. ‘But your mum’s right. That’s enough for me.’ He turns to Mum. ‘Want me to check on the girls?’
When she nods, Dad slips from the table.
‘Your dad’s so naughty,’ Mum says quietly, picking off the salami that’s fallen on my top. ‘But the pizza is nice, hey?’ She grabs a tissue and gently wipes tomato sauce from my chin before turning to fill our water glasses.
Once I’ve had a drink, Mum offers me one last piece of pizza. It’s so good I gulp it down while she walks over to the sink to wash our plates. The doughy base forms a sticky ball in my throat. A big, gooey clump. A clump so big my throat muscles can’t push it down.
I gag.
Pizza is blocking my airways.
I can’t breathe.
I cough.
But the dough won’t budge.
I cough again.
Get the pizza out!
Mum dives over to help me, but Dad’s already back from the TV room, banging me hard on the back.
The pizza-dough ball bursts free.
My lungs fill with oxygen.
‘Here, have another sip of water,’ urges Dad, holding the glass up to my mouth. ‘Silly Wally. You have to be more careful, Ava. You can’t go gulping food down like that.’
Cool water glides down my throat. From the reflection in the kitchen window, I see Mum and Dad exchange worried looks.
‘I guess pizza’s off the menu for good, then?’ says Dad, his voice a little shaky.
Mum nods, her eyes back on me.
‘What happened?’ Nic must have heard me from the TV room and has crept out, leaving her friends behind. Her eyes squint like a viper’s. ‘What’s wrong with Ava?’
‘Sorry, love,’ says Dad. ‘She just had a little moment. Didn’t you, Ava?’
A moment where my life flashed before my eyes!
‘Come on, guys,’ whines Nic. ‘I asked you to keep her quiet.’
Mum tries to explain, but Nic’s making them promise not to let it happen again. ‘Please?’ she begs. ‘No more gross noises. Promise?’
When she’s gone, Dad takes a hold of Mum’s hands. ‘One day at a time, hey?’ he says. Mum’s fingers look so small tucked into Dad’s bear fists, and I wish he’d hold my hand too. The choking episode has turned my head into a pot of boiling water: swirly and hot and ready to bubble over. ‘Look at her now. She’s fine. Aren’t you, Ava?’
Would we really say fine?
‘You’re just like your old man. Love your food a little too much.’
My stomach clenches. Nausea swells. If my muscles get any weaker, how will my digested food get out? No-one’s mentioned how I’ll poop if all my muscles get sluggish. Will I live on pear juice or prunes, like Henry, when he’s having trouble with his bowels? It’s too gross to think about, and I push it out of my mind.
No wonder Nic’s ashamed of me.
The next morning, Dad slides me onto a chair while Mum pours pikelet batter onto a smoking pan.
‘Coffee?’ Dad whispers after giving Mum a squeeze.
Mum glances up at me and smiles. ‘Yes, please. Look at you, Ava. Hasn’t Dad made you look nice?’
Nice? I’m wearing a purple t-shirt and purple leggings.
Anything but purple.
But the smell of pikelets soon fills the room, and I forget I look like an eggplant. Mum and Dad are trying so hard to be quiet that I concentrate on holding it together. Nic’s new friends still don’t know that I’m here.
Luckily there’s no sign of the girls while we eat our pikelets, and I don’t scream or choke – not once. Finally, when we’re done, Mum and Dad whisper about what they should do to keep the ‘there’s no-one here named Ava’ secret safe.
‘Maybe a drive?’ suggests Mum. ‘Take Ava out of the house?’
Dad yawns as he takes a last swig of his coffee. He’s already complained how the girls kept him up half the night. ‘She’ll be fine, won’t she?’ he says. Dark stubble dots his chin and his hair sticks up in all directions. ‘Look at her. Happy as. Can’t I just take her out into the garden?’
Mum hesitates.
I don’t want to go for a drive. I’d rather go outside with Dad and watch the birds.
I’ll be good, I promise.
No screaming. No choking. No hitting.
Mum and Dad are still deciding when we hear the bathroom door click.
‘Uh oh,’ says Dad, as two girls appear from the hallway. ‘Too late.’
Mum frowns and gets a baby chook-bum face, the ‘chick-bum’ version. Dad presses a hand gently against her arm. ‘It’ll be okay,’ he whispers. ‘Ava will be fine.’
No screaming. No choking. No hitting.
‘Morning, girls. Come on through and have a seat.’ Dad pulls out a couple of chairs for Nic’s friends, and I grind my teeth while he introduces me. ‘This is Ava, Nic’s sister. Say good morning to Nic’s friends, Ava.’
Hi, Nic’s friends.
Sophie is tall and slim, with braces on her teeth, whereas Bella is short and round, with the blondest hair I’ve ever seen. They both wear shorty pyjamas, like Nic and Mel’s, and have pillow wrinkles squished into their cheeks.
I smile, hoping maple syrup isn’t plastered down my chin.
No screaming. No choking. No hitting.
Sophie explains she has an early netball game. ‘We didn’t want to wake Nic,’ she adds. ‘She’s still asleep.’
‘Fair enough,’ says Dad, ‘but you’ll have some breakfast before you go?’
Mum offers to make them fresh pikelets, and although Sophie says yes, Bella’s too busy staring at me to answer.
Clasp, clap, squish.
‘Bella,’ hisses Sophie, nudging Bella with her elbow. ‘Do you want some?’
Bella quickly closes her mouth, but it’s too late. My heart clatters like goanna claws on concrete. I’ve let out a tiny squeal.
Mum’s shoulders tense, and Sophie raises her eyebrows.
‘It’s okay, Ava,’ whispers Dad, close to my ear. ‘Keep your mojo.’
I shut my mouth. I need to do this. For Nic.
Don’t scream, don’t scream, don’t scream.
‘Long thin slimy ones, short fat gooey ones,’ Dad sings quietly. ‘See how they wriggle and …’
Mum shoots Dad a look and he quickly stops singing. ‘Look, a willie wagtail on the fence, Ava,’ he says instead. ‘Pretty, hey? Shall we go outside and see it?’
‘How’s she doing that?’ Bella asks Sophie, looking at my clasping hands.
Mum forces a smile. ‘What else can I get you, girls?’ she says too brightly. ‘A juice? Another pikelet?’
Bella keeps staring. Sophie shakes her head absently.
‘Come on, Ava,’ says Dad. ‘It’ll be good to get some fresh air.’ But I’m stiff this morning, and my feet won’t untangle. As Dad bends to pull my legs around, I glance over the top of his hea
d. Sophie’s throwing me an apologetic look. The ‘I feel so sorry for you’ look. The ‘poor you’, ‘poor special child’ look. The look Nic hates.
My chest tightens.
Don’t scream, don’t scream, don’t scream.
‘Come on, sweetheart,’ Dad whispers, tugging at my legs. But they won’t move.
‘Ava has Rett syndrome,’ explains Mum when she spies the disapproving curl on Bella’s lips. ‘Clasping hands is one of her things. But it’s okay, you can still talk to her. She loves making new friends, don’t you, Ava?’
I’ve met a million Bellas before, and I know I’ve a better chance of making friends with the willie wagtails than with someone like her.
I shove my fists into my mouth, but I can’t stop myself. Three loud screams sneak out.
‘Okay, now it’s really time to go outside,’ says Dad.
He heaves me off the chair and steps expertly behind me to steer me away from the table. Bella’s still staring, her lip still curling. I try to look away. I swear I try. But at the last minute, just as Dad’s about to turn me, I reach out and grab a handful of white-blonde hair. It’s soft. I pull. Hard.
‘Owww!’ Bella howls.
Dad struggles to unlatch my fingers, and Mum rushes over and fumbles to pull me away. But my fingers are gnarled and stiff and stronger than they look.
‘Mum! Dad! What the …’
Nic and Mel are running towards us, but Nic stops at the fridge, her face creased with sleep, her eyes wide.
Bella’s hair’s in my fist. Sophie’s mouth’s open. Dad’s fingers are over mine, trying desperately to tug me away.
‘It’s alright, Nic,’ Mum soothes. ‘We just had a little accident.’
‘An accident?’ Nic yelps. ‘Ava, let go. This minute.’
My muscles finally give in and Bella’s hair is released. Bella jumps away like a cat and rubs her head while Sophie, Nic and Mel crowd around her, asking if she’s alright.
Everything I've Never Said Page 2
