‘Don’t stare,’ I say to Bella.
I laugh as she scurries away into the crowd.
‘They’re here,’ calls Dad.
The music hushes. Our front door swings open.
‘SURPRISE!’
‘Oh my god, what’s going on?’ Nic’s eyes are wide as she looks around our lounge. ‘You’re throwing me a party?’ she gasps. ‘But …’
She doesn’t finish because her friends run to her and wrap her in such a tight bear hug she can hardly breathe. Mum, Dad, Kieran, Henry and I grin, waiting for them to finally let go. Then Nic squeals when she sees the table groaning under the weight of all the presents. She’s going to lose it when she unwraps her laptop. But instead of opening her presents, she eyeballs Mel, who’s waiting with her straightener at the ready. ‘Did you do all this?’ Nic asks.
Mel shakes her head and points to me.
‘Ava?’
My eye-gaze device is in front of me, so I could answer yes, but I don’t. Because, for one, it wasn’t just me – lots of people helped. And secondly, I can’t take my eyes off Nic.
She hasn’t looked so happy since forever.
Maybe never.
‘This was your idea?’ she asks.
‘Don’t worry,’ says Mum, ‘we’ll take her out so she doesn’t—’
‘No,’ says Nic. ‘Ava’s my sister. I want her here.’
So I stay. Long enough to see Nic reappear from her bedroom with hair as straight as uncooked spaghetti. Long enough to see Nic’s friends gather around her as she counts the candles on her cake. ‘Five, six, seven, eight …’
Long enough to see, in the last second before she blows them out, Nic glancing up at me.
I smile and she smiles back. I don’t need words, or eye-gaze, or anything.
Happy birthday, Nic. I love you.
Girls with Rett Syndrome have used their eyes for years to give us a window into what they were thinking … with current eye-gaze technology they can use their eyes to speak and communicate more definitively. Susan Norwell MA, ATCAP, Rett Educational Specialist, Co-Founder Rett University
Professor Andreas Rett, a doctor in Vienna, first observed the signs of Rett syndrome in two of his patients in 1954. We now know that the developmental disorder, found mainly in girls, is caused by a genetic mutation on the MECP2 gene, a protein found in every cell of the body.
MECP2 mutations result in difficulties with speech, sensory sensations, breathing, movement, cardiac function, chewing, swallowing and digestion, but by far the greatest difficulty is dyspraxia – the struggle in programming the body to perform motor movements, making it hard for affected girls to do what they want to do.
Dyspraxia, combined with the inability to speak, makes it virtually impossible to assess the intelligence of girls with Rett. Traditional testing methods rely on hand use, to exchange cards or to point, or on speech to check understanding.
Luckily, advances in technology are now allowing us a glimpse inside a Rett girl’s mind, in particular with the development of eye-gaze equipment like those described in the story. Sadly, these machines are very expensive and can be difficult to master, especially considering the dyspraxia most girls struggle with.
However, we remain hopeful that one day our girls will tell us everything they’ve never said, but until then, I hope this book will help people understand.
The voice of Ava is my representation of the person I imagine she is. From our own family’s experience, we’ve found that Rett girls share equal parts warmth, humour and frustration, but without speech or useful communication, they are often trapped inside their bodies. One look into their eyes, however, reveals they have so much more to say. Rett girls can’t talk, but they definitely understand.
Helpful websites
www.rettaustralia.com
www.rettsyndrome.org
Writing a story so close to your heart is not an easy matter. Everything I’ve Never Said would have remained in the infamous ‘bottom drawer’ if not for the encouragement of my wonderful husband, Don, who championed the story from the start.
Thank you to Kristina Schulz, who always believed it would happen, and to the whole UQP team, in particular Cathy Vallance, Katie Evans, Kristy Bushnell and Jo Hunt for being an invaluable part of the journey.
Thank you to Jessica, Lara, Charlize and Bella for helping update me on music, movies and collectable figurines, to Kimberley Claydon for OT advice, and to Maggie and Lauren for language suggestions and scouting for the boring bits. Thank you to Michael Gerard Bauer for your kind words and support. A big shout-out to friends, both writing and otherwise, for your enthusiasm over the past seven years, when I often waivered about writing this story.
I’m grateful to the Rett community, in particular the International Rett Syndrome Foundation – for your gift of knowledge when the path ahead seemed murky, and to all the support workers, parents, teachers and therapists who have supported us along the way. Thanks also to Susan Norwell.
And finally, to Charlotte, for giving me an unexpected trip to ‘Holland’ and teaching me what life’s really about.
First published 2018 by University of Queensland Press
PO Box 6042, St Lucia, Queensland 4067 Australia
www.uqp.com.au
[email protected]
Copyright © Samantha Wheeler 2018
The moral rights of the author have been asserted.
This book is copyright. Except for private study, research, criticism or reviews, as permitted under the Copyright Act, no part of this book may be reproduced, stored in a retrieval system, or transmitted in any form or by any means without prior written permission. Enquiries should be made to the publisher.
Every effort has been made to contact copyright licensees for permission to reproduce material. If you believe material for which you hold rights is reprinted here, please contact the publisher.
Cover design by Jo Hunt
Author photo by Jack Venables
Typeset in 11.5/17 pt Berkeley Old Style Std by Post Pre-press Group, Brisbane
The University of Queensland Press is supported by the Queensland Government through Arts Queensland.
The University of Queensland Press is assisted by the Australian Government through the Australia Council, its arts funding and advisory body.
ISBN 978 0 7022 6027 8 (pbk)
ISBN 978 0 7022 6169 5 (pdf)
ISBN 978 0 7022 6170 1 (epub)
ISBN 978 0 7022 6171 8 (kindle)
A catalogue record for this book is available from the National Library of Australia.
UQP is not responsible for content found on non-UQP websites.
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