by Alison White
‘Well done, Louis, three seconds. Now we will aim to make it four.’
You’ve had an adventure today. Greg went to Tesco with Tasha and Jack to get Halloween costumes and fake blood and you wanted to go with them too.
I’ve heard the car arrive back outside on the drive, and Tasha and Jack have burst into the house, through the living room and into the kitchen where I am.
‘You won’t believe what happened!’ Natasha says excitedly.
‘What?’ I ask.
Greg’s wheeling you in through the living room towards us.
‘We lost Louis in Tesco,’ Jack shouts.
‘What! What do you mean you lost Louis?’
‘We were looking down the aisle trying to find the fake blood and Dad had left Louis in the wheelchair at the end. When we turned round he’d gone,’ Tasha tells me.
‘Louis!’ I exclaim.
‘We were running down all the aisles trying to find him and Dad ran to the shop entrance to ask the security man if he’d seen a boy in a wheelchair leave the store,’ Jack says.
‘The man said no, he must still be in here,’ Greg adds. ‘We watched as he used the cameras to look down each of the aisles but Louis wasn’t there. So he checked upstairs and when he got to the far end of the shop in the café there he was on the security screen. He was sitting at a table in his wheelchair with a drink.’
I really am amazed.
‘Louis, how did you sneak away so quietly?’
‘He went up in the lift,’ Jack announces.
‘Louis! And how did you get a drink?’
‘I asked for some water,’ you say calmly.
It’s as if you’ve metamorphosed into a different child. We all stare at you. Then you do a few whoops and wave your arms and legs up and down and we relax our gaze. You’re back to normal.
It is an incredible moment for us as a family. It’s the first time you’ve done anything independently; you’ve taken us all by surprise. But how did it feel for you? What went on in your mind? You don’t let on, you don’t say anything else, but you enjoy hearing us tell the story to others.
You want a tambura for your birthday. I suppose it is easier than the steamroller, escalator, double bass and tuba that you’ve asked for before. You’ve already got a euphonium, a guitar, a didgeridoo and still want a sitar. Every year on your birthday or at Christmas these are the things that you’ll ask for.
‘What’s one of those, Louis?’
‘And a Tibetan horn,’ you throw in as well.
Greg says it will only be a waste of money, that you won’t be able to play it, and our friend Squidge tells us he’ll adapt an old sitar of his instead.
‘That’s not a tambura!’ you tell me with clear disappointment on your birthday. ‘This is a tambura.’ And you show me on YouTube on your computer. The woman holds the neck of a large Indian instrument, speaks with a soft American accent as she twangs. It is repetitive and mesmerising. Where will I find one of those?
But I manage. Miraculously, I find one for Christmas and now an enormous black case sits in your room. And you love it. You proudly show anyone who visits. At bedtime you ask Greg to tune it. I hear droning drifting out of your room and Greg calling out my name softly to come and see.
‘Look at Louis.’
You sit upright in your bed with your pyjama top in your mouth and your head nodding forwards, your eyes rolling back; it has sent you into a trance. And we use it now to help to soothe you at bedtime, calm you, send you to sleep.
I take you out of school early and drive you across town to the swimming pool. I’ve found Sue who is going to try to help you. It’s taken a bit of negotiation with the local council to allow it to occur – ‘it’s not in our policy document’ – and the pool is fully booked after school hours for clubs and children’s swimming lessons. There’s nothing for disabled children after school, not those who would require one to one assistance. They tell me there is no demand. But I demand repeatedly so now I’ve managed to secure a session as long as it happens before school time ends.
The disabled changing room makes an enormous difference when taking you there. I dread turning the corner towards the room in case I see a light on under its door. Then we will have to wait outside as you yell and cry that you will be late for your lesson.
You pull at your shirt buttons as I help you take off your school clothes. You can’t wait. I get you into the metal chair on wheels and wheel you through the communal area past the showers and out onto the poolside. The chair makes a creaking screeching sound as I push and you join in. Little children clutch their parents’ legs with fingers in their ears as we pass. The winch has been put into place and your metal seat is clipped onto the hoist frame, like a mini crane; it lifts you into the air and swings you down into the water. I can’t help but notice how badly twisted your feet look as they shake up and down with excitement.
The leisure centre is newly built and the main pool is split into two sections. One is deep at both ends and limited to lane swimming; the other is designed to be flexible, its floor height can be altered. It’s an amazing facility to have on our doorstep, and now that your lessons have started to be weekly the pool staff are getting to know you. They’ve all smiled and agreed to be your friend on Facebook as they pump the hoist, and raise you into the air.
Today Tom, the lifeguard, has already changed the height of the floor to allow you to stand in the water and Sue is walking you up and down the pool over and over.
It is helping you to be upright, helping you to exercise your legs, helping bit by bit to strengthen you.
*
I would never guess that in four years’ time you would be swimming. You will still swallow buckets of water, retch so loudly that people will leave the pool, but you will glide by and your legs will sway behind like a tail as you swim the length of the pool eight times in a row as Sue wades in the water beside you, rushes to place her hand on the end wall to cushion your head as you swim into it hard.
You are shrieking. The sound is swirling around the living room. Your arms are raised up towards your shoulders, elbows bent, hands cupped and fingers curled like claws. Your mouth is stretched across your face in an enormous smile. The clunking sound of your frame has ceased; you’ve abandoned it at the end of the room. Instead the warm thud of footsteps is resounding off the wooden boards as you balance towards me, wobbling with each step. I am calling out to you, telling you to keep going.
‘Louis, you’re nearly there. You can do it, Louis, you can do it.’
Along with your exercises with David another miracle has occurred. We’ve found something that can occupy you. Something you can concentrate on all by yourself and enjoy. Who would have thought it was possible? It’s taken a while, four years, for your brain to make the full connection you need to be able to do it: you can play the piano.
It was Emma who suggested it. I met her at your school when you were ten. She is a parent of a disabled child who goes to your school; her son Jack is older than you. Her Jack came over and held Natasha’s nose tight when we’d come to collect you from school one day. Emma had walked quickly up to us and apologised, had asked Jack to stop immediately. Little Tasha had stood motionless. Our eyes had been locked on each other. I’d been smiling reassuringly as Emma had got Jack to let go of her nose.
‘Well done, sweetheart,’ I whispered to Tasha. ‘You handled that really well.’ I squeezed her hand and put my arm around her. Emma started to talk. She revealed she was a music teacher and in particular she taught piano.
‘Ah, I’d really love my children to learn the piano.’
‘Would you like me to try all three?’
‘Yes, I would.’ I was thrilled as I agreed.
‘It never worked with our Jack. We could try with Louis but I’ve no idea if it will work or not, but shall we give it a go?’
So we did.
At the start you just sat there on the piano chair with your head bowed and listened as Emma played a
tune and then sang to you. She placed the music onto the stand and traced the notes with her finger calling out the letters as she played. It took over a year for you to respond and play a few simple notes and then another year before it seemed to click in your brain.
‘I don’t really understand what is happening with Louis,’ Emma told me. ‘If you watch he turns the pages at the right place in the music but he’s not looking up, he’s looking down at the keys. I think he is learning the tune off by heart, by ear.’
And so you are. You hold your fingers above the keys and press gently. Even though your playing is filled with mistakes, it has a sensibility that takes all of us by surprise. Your fingers are stiff and crooked; you can barely hold a pen. You cannot write except crudely your name, L – o – u – i – s, like the first scrawls of a three year old, yet here, remarkably, you are playing a tune. And you won’t miss a lesson even though the others have long since given up. Emma beams at the door.
‘Ah, here’s my favourite pupil.’
We increase your lesson to an hour and you still want to stay for longer.
‘I have to be careful,’ Emma tells me. ‘If I play or sing a wrong note he remembers and copies me.’
And for the first time in the fourteen years of your life you have something to do. You’ve not been able to do anything yourself before this. Take reading, for example: you can read words but you don’t understand a story. You don’t seem to be able to differentiate between fact and fiction. The other day you asked me, ‘Where does Little Bo Peep live?’ You can’t follow a film either, but you can listen to music. It must require a different part of your brain, a different kind of understanding.
You become spellbound, mesmerised, as Emma plays and then you sit in your seat and lift your hands and respond. Your fingers hamper the way that you touch the keys but you overcome this. You use the sides of your little finger, play as if you have claws that can bend and we listen. The music comes from the piano in your bedroom and floats around the house, up to our bedroom above. And it calms you and it calms us. It sends us all to a place of peace for a while.
FIFTEEN
Jack’s taken up surfing and it’s difficult to watch him down on the beach and care for you too, and the thing with surfing is it takes quite a long time in the water.
Jack’s been having surf lessons on a Tuesday with his friend Jamie and Jamie’s dad Mike takes them both to their lesson. I feel grateful, guilty and torn. I want to be doing these parent things too but I can’t. I have to rely on the kindness of others in order for Jack and Natasha not to miss out. Tonight it is Thursday and Jack is excited – ‘surf is up’ – but there is no one who can take him down to the beach except you and me. The frustration of always saying ‘I’m afraid I can’t, Jack’ gets to me this time, it hurts, and I say, ‘Yes, okay,’ and I get you ready and take you both down in the car. Jack’s already in his wetsuit and jumps out as soon as we get there; he grabs his board and is running towards the beach and the waves. Before he is out of earshot I call out.
‘I’ll be watching you from the car, Jack. Be careful, and don’t be too long.’
It’s too cold for you to be wheeled down onto the beach in this wind. We sit in the car on the road looking out at the sea and a tiny black shape in the waves. There isn’t anyone else in the sea tonight; it’s out of season, an autumn school night. The light is fading, turning to dusk, and Jack’s shape is getting harder for me to pick out and then all of a sudden he’s gone, I can’t see him. I’m out of the car.
‘Louis, you will have to wait here on your own. I need to check Jack,’ and I lock you in.
I’m running down the beach calling Jack’s name, looking out in vain into the sea. The waves seem to have grown bigger even though the tide’s receding and then as I reach the water’s edge I see his small dark shape in the foam and I wave frantically at him to come in and the relief is enormous that he’s all right.
Jack catches the next wave in towards me as I wait on the sand. He stands happily and starts instantly to tell me about the waves he has caught.
‘Did you see me catch that last big one, Mum?’ he asks as we walk across the beach back to the car. I don’t want to spoil this moment by telling him how worried I was and I squash away my anxieties about you alone in the car. Instead I embrace this feeling of closeness as we cross the expanse of silvered sand in the dusk. You are fine when we get back to the car, you aren’t troubled at all, so I’ve managed precariously to balance the needs of you both, and for once help Jack do something he loves.
You’ve never had a friend, but today you come home from school and tell me you have one.
‘Can Oonagh come for a sleepover?’
‘Who’s Oonagh, Louis?’
‘She’s my friend.’
‘Is she one of the teachers or assistants?’
‘She’s in my class.’
‘Hey, that’s exciting.’
‘Can she come for a sleepover?’
‘Well, it’s probably best if she comes over to play first.’
‘I want her to come for a sleepover.’
*
Oonagh writes you a letter. You unzip your school bag and pull out the envelope and ask me to read it.
I stare at the letters written in pencil. They are small and square and make no sense. Then I realise that most of the letters are upside down and back to front.
I am sorry Louie I can not come for a sleepover at your howse please stop asking me.
‘Can Oonagh come for a sleepover?’
‘No, Louis, she can’t. But we could see if she is allowed to come to play here sometime. Maybe over half-term?’
‘Will you ask Oonagh’s mummy? Will you ask Oonagh’s mummy?’ you repeatedly ask me all evening.
‘Let’s write a letter, you can take it to school.’
You whoop.
I carefully write a letter to Oonagh and her parents and ask if she would like to come over to play, I invite them as well. I say we can accommodate whatever best suits them and give my telephone number. I put the letter in an envelope and put it in the schoolbook with a note asking the teacher to give the letter to Oonagh.
We don’t hear anything for a while and then I get a phone call. Oonagh’s mother is fine about our invitation. Just Oonagh will come; we are going to meet halfway to lessen the journey.
When I come later to collect you from school for swimming you greet me with your favourite question, ‘Have you heard from Oonagh’s mummy?’
‘You’ll be so lucky,’ Mr Moon, your support assistant, mutters. He’s usually jolly so I’m puzzled.
I look down at you in your walking frame. You are leaning forwards as you try to stand still.
‘Yes, Louis,’ I grin. ‘I have, and she can. She can come next Thursday for the day.’
*
It went wrong, though, didn’t it?
At first it was fine. The changeover worked and her mother was friendly. I can well understand she’d be uneasy to send her daughter off somewhere new. Oonagh was nervous; she replied to every repetitive question you asked with a ‘no’ as she nervously moved her feet. Greg and I asked friendly questions and offered nice treats and then you played a game of ‘Guess Who’. Well, Oonagh played but you couldn’t concentrate, could you? You seemed overcome with excitement at her being here. You showed her your favourite things in your bedroom, your piano, euphonium and guitar, your CDs and laptop too.
‘Will you be my friend on Facebook?’ you asked.
‘No, Louis, I can’t.’
‘Go on,’ you giggled.
‘No, you mustn’t ask.’
‘Louis, it’s rude to giggle.’
You loved every minute and Oonagh seemed happy that you found her funny even though she told you off. But she flushed bright pink when you asked her about Facebook again. You suggested I ask her mum.
‘Oh no, don’t do that.’
I left you two playing and went upstairs to get a book from my room. I heard Oonagh’
s footsteps go into the bathroom and the door close; I heard your footsteps following. You were giggling as I ran down the stairs fast. You were pushing the bathroom door.
‘No, Louis!’
I grabbed the door handle and pulled it closed quickly.
‘Louis, don’t do that. It’s not polite.’
‘It’s rude,’ you said with a look of delight.
‘I’m so sorry, Oonagh,’ I said when she came out. ‘That was an accident.’
*
You come home from school howling. I take your arm and help you out of the bus and inside where you sit in your wheelchair in your bedroom and cry. Tears run down your cheeks and drop into your lap.
‘Oonagh says she can never come to my house again.’
‘Oonagh says her mummy says I’m a rude boy.’
‘Oonagh says never ever.’
‘Can Oonagh come again, Mummy? Can she come again? I won’t do it again.’
I go to your school and ask to have a private word with your teacher.
‘How is Louis at school with Oonagh? Is Oonagh okay with him? He’s very upset right now.’
The teacher says that the two of you ask especially to sit and do things together. She doesn’t think you are bothering Oonagh. She says you both appear happy.
I write a second letter. I’ve tried calling but had no answer. I explain that the opening of the toilet door was an innocent accident, that I am sorry and that I should have explained in more detail at the time.
I tell you I’ve written a letter and we will have to wait and see. You ask me if I’ve heard every day. You cry in your room every night. We hear nothing for a very long time. So long that I think we never will. Then a letter comes back. It is kind but clear.
