by Mel Darbon
“Doesn’t that make what you did worse then, Dad?”
“Thanks, Ben. Look, I’m not trying to make excuses for myself but it terrifies me lately that Jack explodes and then thinks about it after the damage is done; because he has no control over the injured part of his brain. I know how dreadful it is that this happened to Jack, but it did, and I couldn’t bear it if anything happened to you, Rose.”
“Jack can control his broken bit of brain. That’s what he’s been learning. He’s thrown the old Jack away. He’s a new Jack – and he’s always been a different Jack with me. Now he will be for everybody, cos he’s learning. Dad, I want to choose for me. I choose Jack. Please give him a second go.”
Mum sits back down next to me. She rolls up the edge of the sheet. “I won’t make any promises, Rose, but I’m open to a second chance for Jack – I think you both deserve it.”
I lean over and hug her. My heart is jumping up and down on clouds. “Dad?”
Dad gets up. He sweeps the hair back off his face. Then he picks up his coat. “I’m going for a walk.” He shuts the door behind him.
I’m too lost for my words.
“He needs time to think, sweetie.”
“He’s a dick.”
“BEN! That’s not helping. It’s difficult, he just wants to protect you, we both do, because it’s hard letting go of your little girl.”
“I’m not little any more, Mum.”
“I know, you’re my grown-up Rose. But you’ll always be my little girl, the same as Ben will always be my little boy.”
“No I won’t,” Ben grumps.
“WhencanIseeJack?”
“I don’t know, darling, I just don’t know.”
I slide under the covers. I can’t bear Mum not knowing.
My happy puddles on the floor.
I stand by the window watching the clouds make dragon shapes in the sky.
Mum crashes through the door, making me jump. Her cheeks are red and rain damp.
“I’m so sorry I’m late, darling. What are you doing out of bed? You’ll catch your death of cold!”
She’s all out of Mum sorts. She makes me get back into bed. I hug her tight.
“I’mokaythankyou. Stop fuss-potting. Can I see Jack?”
She puts my little blue bear on the table by my bed. “He was in your coat pocket like you said. He nearly went off to the dry-cleaner.” She sniffs him. “Mind you, he could do with a wash.”
“WhencanIseeJack?”
“Your dad didn’t get home, I mean back to the hotel, until really late last night, so I was in bed. He left again very early this morning, muttering about things to do, but he said he’d come to the hospital later, so you can talk to him then. I’m sorry, Rose, I wish I could give you a better answer than that, but I can’t.” Mum won’t look at me.
“Put him down, Mum.” I take the blue bear away from her and hold him tight. I don’t want to lose my strong. “I walked and walked to Jack. I didn’t give up. I won’t ever give up.”
Mum has gone all pink-flushed. “It was lovely to see Ben yesterday, wasn’t it? Grandma’s coming later, now you’re getting stronger.”
“Don’t make the point go away!”
Mum smiles and takes the bear back. She dances him on the bed. I do my big frown at her. “I’m getting very cross-patch, Mum. You’re not listening to me.”
“Oh darling, I’m sorry, I’m just happy to see you looking so much better.”
She tucks a bit of hair behind my ear and grins.
“Mum! When—”
My door opens and stops my mouth. Dad walks into the room. He’s wearing the same shirt as yesterday and his hair is standing up. He comes over to me and wraps me in a big hug. When he gets up, he won’t look at me. Like Mum. I pull his face round. It’s full of light and dark. His mouth does a wobble.
“Dad—”
“Rose.” He swallows his words down. Then he shakes his head. He shadow smiles and takes a big breath. “Sarah, it’s time for us to leave.”
Mum picks up her bag.
“You just came here!”
“I know but we’ll be back soon, Rose, I promise.” She holds me in her eyes.
“Then we have Jack talk.”
Dad kisses Mum on her forehead. “Come on, Sarah.”
Mum nods and blows a kiss to me. “Okay.” She takes Dad’s hand. They walk away leaving my head full of tangled words.
Dad turns back to me as I’m about to follow them. “I’ve brought someone to see you.” He opens the door. “Go in, she’s waiting for you.”
Jack steps into the room. “Hey, you.” He grins at me and the sun shines in my head. And my heart flutters blue butterfly wings.
All my hurt, all my sad and all my ill go away.
Jack pushes his curls away from his eyes. “My Rosie.” His voice breaks up.
I open my arms. “My Jack.”
He runs into them.
“Rosie, Rosie, Rosie.” Jack’s eyes glow summer-sky blue. “I was scared I’d never see you again. I’m so sorry, Rosie, it’s all my fault.”
I lean over and kiss him to make his words stop. He holds my face in his hands and kisses me back. We look at each other and smile and smile. We don’t need words to say what we feel. We can see it in our eyes.
Jack pulls something out of his back pocket. “These are the postcards I wrote to you when I found out you were missing. I wanted to feel close to you and I wanted you to know I loved you…even when I was being useless Jack who couldn’t be with you to help you.”
“Don’t say that! You were with me. You did help. I found all your other cards that Dad stole away from me. I cried when I read them. I knew I had to find you. They kept me strong on the trains, strong in the bad house and under the bridge. They kept me being Rosie.”
I take the new cards from him and get his other ones I put under my hospital pillow. “I took these with me everywhere. When I was sad I looked at them. When I needed you I looked at them. I hid them in my bag pocket and kept you warm and safe. But I kept the real you in my heart.”
“The real me is standing here in front of you. I’m your Jack, but a new one. Do you understand that, Rosie?”
“Yes, I do. You threw old Jack into the sea.”
He takes the cards and puts them on the bed. He holds both my hands in his and puts his serious face on. “You made it through the worst time all by yourself. You’ll never have to do that again. I love you, Rosie Tremayne.”
He picks me up and is about to swing me round. He stops when he sees my drip. He touches where it goes in my arm. His eyes are full of unhappy.
Then a Jack grin lights up his face. “Rosie, look!” He picks up a postcard with our little blue butterfly painted on it. “He came back to me, our butterfly, and sat on my hand. I took him outside and blew on him to make him fly. I watched him disappear behind the clouds. How did he come out in the snow, Rosie? He should have been a caterpillar in a cocoon thingy.”
“He’s our magic butterfly. I saw him this morning, resting on my window. He was warming his wings in the sun.”
“He brought you back to me like I told him to. My new friend Seb, at the unit, said I was bonkers and losing the plot. But we know better, don’t we, Rosie?”
I smile. “Yes, we do.”
Outside, winter-white clouds race across the sky. The sea churns green and flings foam up into the air. Jack and I lean against the glass and look out at the world. He slips his arm around my shoulders. Where our breath mists up the glass, I draw a heart with my finger. Inside it I write,
My story begins when I was four years old and my brother Guy was born. I realized, even at that young age, that nothing was ever going to be the same again, because it soon became apparent that my brother had severe disabilities; but it wasn’t until many years later that he was diagnosed with autism.
The Autism Spectrum Disorder, ASD, includes a wide range of symptoms, levels of disabilities and skills. Some people have mild disabilities and c
an lead a relatively “normal” life, whereas others, like my brother, have very severe difficulties and require constant care. He cannot look after any of his own physical needs, has limited language, equivalent to that of a two-to-three year old, and will never live independently. Throughout his life his frustrations have boiled over many times as he navigates a world that often terrifies him. His inability to express any sort of emotion means he cannot even articulate when he is in pain.
For my older brother and I it meant saying “goodbye” to childhood and understanding that all the choices made by our parents wouldn’t be directly about us any more and that our lives would be, in many ways, as disparate as that of our disabled sibling.
But the positives far outstripped the negatives. The love I have for my brother and him for me is unconditional. When I visit him and he greets me by placing his head on my shoulder and saying, “My Mel”, it means more than a thousand words or gestures ever could. I adored him from the moment he was born and wanted to protect him and take care of him. In return he has taught me compassion, patience, the ability to empathize and to laugh; I would not be the person I am today without him in my life.
It was when I was nine years old and my brother was five that an episode occurred which had a huge impact on me. I was out with my mother and my brother shopping when he exploded in a tantrum, shouting, kicking and screaming. Several people came up to us, not to offer help, but to berate my mother, telling her she was a disgrace, my brother’s behaviour was disgusting and that he ought to be put away.
I couldn’t understand why people were so judgemental. I wanted to tell them to “put my brother’s shoes on” for a moment and try and comprehend what it must be like to be him, locked in a frightening world that made no sense, where something like a flight of stairs can paralyse him; a world where even sleep holds no respite, his dreams tormenting him and making him shout out throughout the night.
I knew then that one day I would give my brother Guy a voice. This decision was reinforced when, many years later, we all accompanied my father to South Africa on a work trip. In the taxi on the way to the hotel, the driver turned round to the back and, pointing at my brother, said, “Over here we have a policy of dealing with people like him.” I have never forgotten those brutal words or the horror I felt when he said them. Why did he feel my brother’s life was worthless compared to his?
Over the years my voluntary work at my brother’s centres helped me understand that when you judge someone on their disability you disregard their uniqueness and abilities. When he was younger, my brother was placed with children of varying learning difficulties. As a volunteer I was able to spend more time on an individual basis with some of them and these young people taught me not to make assumptions, that we all communicate differently but everyone has a voice inside them which needs to be heard, because we experience the same emotions and desires; to be loved, to love, to be accepted without limitations.
I also began to recognize that people’s judgement of those with learning disabilities didn’t necessarily come from a bad place but because of fear. There was, at the time my brother was a child, so very little education or contact with people with learning disorders. Things have improved greatly over the last few years but we, as a society, still have a long way to go, so this has fuelled my desire to help dispel the myths of disability even more.
“Having Down’s syndrome is like being born normal. I am just like you and you are just like me. We are all born in different ways, that is the way I describe it. I have a normal life.”
Chris Burke (actor and folk singer)
I was lucky to work as a Teaching Assistant at a very innovative, inclusive sixth form college where students of all abilities learned together. It was at this college that I assisted some teenagers with Down’s syndrome, all of whom were striving to live as independently as possible in the future.
Despite my brother being schooled alongside children with Down’s syndrome, it wasn’t until I worked at the college that I realized that, like people with autism, there is a wide range of abilities, disabilities and skills within the Down’s syndrome spectrum. At one end of the scale at the college there was Charlie, who had limited cognitive skills and needed help in most areas of his life, including eating, and then there was Rosie, who opened my eyes and inspired me to write this story. She was kind, funny and fiercely independent, determined to make her mark in the world; to work, fall in love and get married – after all, the mother of her friend Paula had Down’s syndrome. Like my brother, Guy, I knew Rosie deserved to be heard, because every single one of us merits seeing themselves within the pages of a book.
I shall leave the last words to my Rosie.
“Why is it different? Is it cos I have Down’s syndrome? Down’s syndrome isn’t me. I am Rose.”
Mel Darbon, January 2018
Many people have helped me develop Rosie Loves Jack and deserve my thanks, so here we go.
A big thank you to all the staff and pupils who were part of Pathways and Bridge at Henley College, who taught me to never assume that a person who has difficulty communicating has nothing to say.
To everyone at Usborne for being so passionate about this book. A special thank you to Sarah Stewart for your incisive editorial notes – you made the book as good as it could be – and to Will Steele for the perfect cover design and Nancy Leschnikoff for the beautiful illustrations.
My very own special agent, Ben Illis, whose enthusiasm and encouragement comes in bucket loads.
To my wonderful, supportive Bath Spa MA Writing for Young people peers, Miranda, Jas, Wendy, Tracy, Jennifer, Sarah and Charlotte; with special thanks to Miranda and Jas for continuing to be my dream-team, workshop partners.
To Steve Voake, David Almond, Janine Amos and John McLay, my Bath Spa tutors and to my personal tutor, Julia Green, who encouraged my idea from the start and gave me the vision to see it through.
To Kate and Nigel, who gave me the opportunity to do the MA at Bath Spa, for which I will be ever grateful.
I’d like to thank my parents, who I know will be proud to see this book on the shelves. To my dad for teaching me to never give up and inspiring me with his success as a writer. To my mum for being a strong and independent woman.
Huge thanks to my three children, Aimee, Phoebe and Harry for being a constant source of inspiration to me and for giving me a kick up the backside and telling me to get on with the writing.
To my dear husband Mike, who has made it possible for me to write. Thank you.
Lastly, mostly, my brother Guy, who has severe autism, thank you for opening my eyes to all that is good in this world.
I would like to say a special thank you to Rula for her insightful and considered report on Rosie Loves Jack, and to Larissa at Mencap for putting us in touch. It was wonderful to see that Rula felt that my character, Rosie, was a realistic and compelling portrayal of someone with Down’s syndrome – and that she felt Rosie behaved in very similar ways to herself in various situations.
I hope my story helps people understand those with Down’s syndrome and that they will see, as Rula said in her report, how emotionally open and kind they are, and – like everyone else – how they deserve to follow their dreams.
MEL DARBON spent a large part of her childhood inventing stories to keep her autistic brother happy on car journeys. Having worked as a theatre designer and freelance artist, as well as teaching young adults with learning disabilities and running creative workshops for teenage mums, Mel now writes young adult novels. She recently graduated from Bath Spa University with an MA in Writing for Young People and a determination to give a voice to those who otherwise might not be heard. Rosie Loves Jack is her first book.
@DarbonMel
@meldarbon
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First published in the UK in 2018 by Usborne Publishing Ltd., Usborne House, 83-85 Saffron Hill, London EC1N 8RT, England. www.usborne.com
Text copyright © Mel Darbon, 2018
Cover images: escalator © Kim Wutimet / Shutterstock; butterfly © Olha Polishchuk / Shutterstock
Interior illustrations by Nancy Leschnikoff
Postcard image © THPStock / Shutterstock
The right of Mel Darbon to be identified as the author of this work has been asserted by her in accordance with the Copyright, Designs and Patents Act, 1988.
The name Usborne and the devices are Trade Marks of Usborne Publishing Ltd.
All rights reserved. This ebook is copyright material and must not be copied, reproduced, transferred, distributed, leased, licensed or used in any way except as allowed under the terms and conditions under which it was purchased or loaned or as strictly permitted by applicable copyright law. Any unauthorised distribution or use of this text may be a direct infringement of the author’s and publisher’s rights and those responsible may be liable in law accordingly.
This is a work of fiction. The characters, incidents, and dialogues are products of the author’s imagination and are not to be construed as real. Any resemblance to actual events or persons, living or dead, is entirely coincidental.
A CIP catalogue record for this book is available from the British Library.
EPUB9781474958516 KINDLE: 9781474958523
04619/03