by Alison White
Judy’s always so kind. When she takes you to swimming or to boccia she’ll come back to our house with ideas. This time it’s a knitted headband with a fleecy lining inside.
‘For the winter,’ she says.
You like it! If you hadn’t you’d have dropped it on the floor, forgotten it instantly. But you don’t; instead you whip off your tennis headband and pull the knitted one over your head right down to your eyes.
And for the first time at a party you have three other young people here with special needs. You take no notice of them at all until Gerallt, who is younger and has Down’s syndrome, decides to sit behind you on your favourite armchair and try to push you off. Then you shout at him to ‘go away’, as you clutch your maps and chew your tie. Adults mill around you drinking wine, laughing, and the sound of a sitar being played filters from out of your bedroom.
And then Saskia arrives.
She strides into the people-filled living room, tall and slender in her ballerina skirt, her blond hair tied up high. She marches up to me as I pour drinks in the kitchen.
‘You are Louis’s mum,’ she says with an imperious voice.
‘Yes, I am. Hi, Saskia.’
‘Where’s the cake? It’s mine.’
‘Yes, Saskia, that’s fine.’
She strides away and Leonie, her mother, comes and whispers.
‘Let me know when you are going to light the candles. Saskia will scream. I’ll have to take her out of here.’
*
I’ve been inviting Leonie and Saskia to our house for the last couple of years. I felt she could be a potential friend, that we would understand each other’s predicament too, but it’s not been possible until today.
‘I was amazed when I saw you come in.’
‘Well, I’m rather amazed too. Saskia’s been stamping her feet all week in a rage saying, “It’s my birthday, not Louis’s.” But then Saskia got up this morning and made me write “It’s Saskia’s Birthday” on the big whiteboard in our kitchen. As soon as I did she announced, “We’re going to Louis’s house now.”’
I hardly ever speak with other parents with disabled children about what we are trying to cope with day by day. We usually can’t stand still talking if the children are with us, but Saskia seems to be settling in; Greg’s taken her under his wing.
‘Our respite’s ended today.’
I regret saying this as I see Leonie’s shoulders turn in.
‘I can’t even contemplate that,’ she says, looking at me with her beautiful but haunted eyes. ‘I’ve got another six months, then I don’t know what I’ll do.’
‘I’m sorry I mentioned it. Let’s not think about it today. Can I get you a drink?’
*
So we celebrated your eighteenth birthday surrounded by noise and laughter. Saskia pretended your birthday was hers, she told everyone so and you didn’t even notice, you really didn’t care. She commanded when to light the candles, and held the cake while they burned. Leonie kept her distance and widened her eyes with amazement as our gazes caught. As we all sang, Saskia crouched over as if doubled up in pain but she managed to stay stationary, not run away when everyone cheered.
‘We might be able to come here again!’ Leonie whispered as they left shortly after.
*
I can hear you speaking loudly somewhere behind me as I stand by the open front door. You don’t seem to be able to control your voice level but it’s mostly understandable now. You are talking to David.
‘Can we go to Dina’s Head next time?’
‘Where, Louis? I’ve not heard of there.’
‘Dina’s Head.’
‘Where’s that then, Louis?’
You pause. ‘I don’t know.’
‘Has somebody told you about it?’
‘Yes. Aiden at Holly House.’
That’s the respite centre you can no longer attend.
‘Ah, well, maybe. I’ll have to speak with your mum. Do you know if it’s far away?’
‘Yes.’ You draw out the ‘e’ and the ‘s’.
‘It’s a bit of a drive, it’s up near Fishguard,’ I call out over my shoulder.
‘Ah, I see, Louis. I’ll have to see.’
‘Yes,’ you say as your mouth opens wide, showing your teeth.
‘I might need more time to take you there.’
‘Yes,’ you say louder with an enormous grin.
‘I’ll have to try and plan it. I’ll have to see what I can manage.’
‘Just try,’ you say, doubling over with laughter, squealing with delight, knowing that David will.
I experience an overwhelming feeling of tenderness towards you on your birthday. I feel it flood into my veins when I see you come in through our open front door. You are being pushed in your wheelchair; you don’t notice my swollen eyes. You are beaming; you’ve had fun being taken out in John’s car. You have no understanding of the enormous significance of this day and what it means for your future. Greg is exceptionally gentle towards you too; I notice the change in his voice. Is it linked to our sense of life and death? At least you are safe with us now.
EPILOGUE
A few months after Louis’s birthday he got an infection in his right foot and lost the ability to walk for four months. It took two visits to the GP and four to A&E to eventually work out what was wrong. His feet are so twisted it was difficult for the doctors to diagnose the cause. Louis worried he might never be able to walk again but with three courses of medication and special exercises from David, we have got Louis back onto his feet again.
I have addressed my memoir to Louis, although he would not be able to comprehend what I have said in any meaningful way. He may enjoy parts like the Phil Kay section, although he’s stopped screaming about Phil right now; instead Louis’s current favourite greeting is to gleefully cry, ‘I put my mum and dad’s pin numbers on Facebook.’ He revels in delight at the shocked responses he gets.
This story is also Greg, Natasha and Jack’s. I have tried to respect their privacy as much as I can. This is why you may wonder at times where they have gone in the story. Greg hasn’t read the memoir. He says he doesn’t need to: he’s lived it. I hope anyone reading can see that Greg has been trying incredibly hard, for an incredibly long time.
This story is also about our family and friends who have stood by us and helped us through the years, especially Spike and Mary, my parents. Both Greg and I acknowledge they have saved us many times. There are others who should be in this story. I’m sorry if I’ve missed you out, your support has also been important to us.
This story is written from memory. These moments are seared on my brain. I let my mind choose which ones would erupt for me to write down. They came out in a jumbled torrent and it feels good that they are now on the page. I can let go; let the future come into our lives. Of course, I must point out that the dialogue is from memory so won’t be completely accurate. But the conversations capture my impression of the moments and perception of what was said.
This memoir is about a mother’s love for her son. It is also about hope – hope in others, hope in systems, and hope for the future. It is about sharing, trying, wanting and giving. It is what all of us humans need and feel.
The future is frightening. I worry about Louis and his care requirements all the time. Greg and I are tired and getting older. How much more energy do we have left?
I’m aware when I say this that we are not in any way unique or different from all the others who are struggling; we are more fortunate than many with all the help and support we’ve been given.
Service cuts make me worried for all of our futures. When I heard the other week that Holly House, the children’s respite centre close to us, is facing cuts my heart froze. It saved us in our time of extreme need, when Louis was waking seven times in the night. What will happen for others like us? I hope this story can help others to comprehend how tragic it will be to lose places like this. We parents need voices in high places to prevent such a terribl
e thing.
When Louis turned nineteen I discovered that Greg had called social services and told them we could no longer cope. I was horrified and worried what would happen to Louis but it turns out that Greg did the right thing. At last we were assigned a social worker who knew her job. We were given hours of respite with an amazing new organisation called Value Independence. Since being given this help Louis’s outlook has begun to seem brighter. Value Independence is a social enterprise company that wants to help adults with disabilities have as much independence and active fun as they can. It’s remarkable it exists at all. Its vision is great, its monetary means small, but the staff are doing wonderful things with Louis. Louis gets to say what he wants to do and they try to make it happen. As you can imagine, Louis comes up with all sorts of suggestions: ‘I want to see a steam train,’ ‘I want to do a bungee jump,’ ‘I want to post a letter to Oonagh,’ ‘I want to go for a shave at Bromos’ (the barbers – Louis wants to avoid having a bath at home later), ‘I want to visit a radio station.’ There is always something that Louis has thought of to try, and, thanks to Value Independence, Louis has been having a ball.
Last autumn as Louis turned twenty some more good news came our way; amazingly after a three-year application process Louis has been given the chance of attending a residential educational college. There he can have music therapy, enjoy drama and exercise and integrate with others his age. Louis was nervous about this major life change but wanted to go. There’s been little for him to do back at home with school having finished. The Welsh Government and our local council have agreed funding for two or possibly three years and he started college a few months ago. Needless to say, it was quite a preparation process and I was in emotional turmoil as I drove Louis and all of his things to the college, but it was Louis who helped me at that moment. As he scooped cake and custard into his mouth at the service station en route to the college I told him I was going to miss him and he paused as he ate, held his spoon in the air and told me with an expectant face, ‘It’s all part of growing up.’ It’s at that moment I realised that Louis has all the same wishes and desires that we all have, he needs a little independence by his age. Now he’s gone he’s still keeping me on my toes from afar with his mischief (there’s more stories) and comes home for long periods to be with us in the holidays, and of course will be back with us when college finishes.
Finally, this story is offered as a glimpse of our lives. I’ve never quite known where to begin when someone asks me what I’ve been up to. I’ve never quite known how to explain what our daily life is like. I wanted to write how it is in order to give others a greater understanding of disability and caring. And to be totally honest, I wanted to write something that would make people consider being Louis’s friend, or a friend to some other mentally and physically disabled person. It’s worth it, it’s a challenge, but it definitely makes you feel like you are alive.
ABOUT THE AUTHOR
Alison White grew up in Sheffield, studied in Leeds and moved to Glasgow, where she set up her own landscape architecture business. In 1996 Alison’s first child, Louis, was delivered by emergency caesarean section at thirty-two weeks’ gestation. He suffered severe brain damage due to her undetected pre-eclampsia within hours of his birth, and has cerebral palsy and learning difficulties. From this point Alison’s life drastically changed.
In 2003 Alison left Scotland to live remotely in South West Wales with her husband, Greg, and their three children, Louis, Natasha and Jack, where they still live today. Here they built a house to meet Louis’s needs and were able to allow their younger two children to run wild.
COPYRIGHT
First published in the UK in 2018
by Faber & Faber Ltd
Bloomsbury House
74–77 Great Russell Street
London WC1B 3DA
This ebook edition first published in 2018
All rights reserved
© Alison White, 2018
Cover design by Faber
Cover images Alison White; © Daiva Baumiliene/Getty;
Terry Mccormick/Getty
The right of Alison White to be identified as author of this work has been asserted in accordance with Section 77 of the Copyright, Designs and Patents Act 1988
This ebook is copyright material and must not be copied, reproduced, transferred, distributed, leased, licensed or publicly performed or used in any way except as specifically permitted in writing by the publishers, as allowed under the terms and conditions under which it was purchased 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
ISBN 978–0–571–33565–7