by Alison White
You want to ring Liz. I know that eventually she’ll be unable to bear it. So with Liz’s agreement we put into your diary the times you can call her and this instantly helps you. No longer are you searching the house over and over. You know exactly when you can call and you stick to it like a well-designed plan.
I’m learning what’s working.
*
Liz is a good friend. It’s isolating living remotely and I’m lucky that Liz lives near here too. We’ve formed a close friendship and it includes you as well. She has the amazing capacity of being able to give time to you and will even have you over for sleepovers now and then. No one else but family contemplates that and you are thrilled. You’ve seen Tasha and Jack go for sleepovers with their friends but you’ve had nowhere to go. Now, every so often, Liz invites you over to stay for the night. After I’ve unloaded your bedding, your suitcase, your commode, your walker and wheelchair, your mashed-up food and your plastic bowl, you say to me, ‘You can go now.’ You’ve got a little independence that you enjoy. You sit in Liz’s brown leather armchair in her sun room holding your maps tight and giggle as you watch her polish her kitchen floor, then you play her piano and listen as she makes her telephone calls.
‘I’ve just had another classic from Louis,’ Liz laughs down the phone. ‘The window cleaner was just round. I asked him in for a cup of tea. “Would you please go now?” Louis asked him.’
‘He wants you all to himself,’ I laugh back.
*
Later, Liz calls again to tell me what time to collect you.
‘You’ll never believe what Louis just said to me then.’
‘What did he say?’
‘Well, I was flitting from one thought to another, speaking out loud so I could share my ideas with Louis and he said, “Liz, you are going off on a tangent!” Where on earth did he get that one from?’
And I know instantly where, and you do too, don’t you?
‘That’s Julia, isn’t it, Lou?’
*
Julia has been helping you for a number of years now. She is often away travelling, building her therapy business, but when she is home, back in Pembrokeshire, she offers you speech therapy with her for free. In most school holidays she invites you over to her house for a session and as the holiday season nears you excitedly ask to call her to book her into the diary. And it’s not like other speech and language therapy you have experienced before. In the past the occasional hospital or school therapist has suggested you should be able to chew – ‘there’s nothing wrong with his jaw’ – and they have tried to encourage you and me to follow their instructions and try more. Hessian sacks have been popped into your mouth with grapes inside and you’ve been asked to bite down, so the juice flows through, and the sack is pulled out, removed quickly before you swallow. The theory is you can learn. We’ve tried this on and off for years but you never do. I’ve now learnt there is something wrong with your bulbar muscles, the mouth and throat muscles responsible for speech and swallowing. It’s through no want of trying that you don’t chew or stick out your tongue, lick your lips, or blow your nose: this is all interrelated with your specific cerebral palsy condition.
But Julia does things differently, tackles the things that can help. She tries to help your speech become clearer while improving your concentration and behaviour. These are all linked: your anxiety at not being understood causes you to get in a stew before you even try to speak sometimes. Julia helps you to breathe deeply. She asks you to fill your lungs and breathe out slowly making a note, turning therapy into a song. You are enthralled as she sings out her note with a clear choir voice and you copy, singing out your note as she gently counts. It’s remarkable how long you can go now. It used to be nine seconds but now it is twenty. And she’s taught you some words that are fun to pronounce like ‘billabong’ and ‘kookaroo’ and then shown you on maps where Australia is, where these words come from, puts the whole thing into context for you. And she’s noticed your difficulty with concentration, the way that you break off, call out in a panic. She softly calls your focus back to your game of Scrabble.
‘Louis, look back at the letters – you’re going off on a tangent.’
See, there it is.
And the last time I came to collect you from your special hour together I’d noticed a light in Julia’s almond-shaped eyes as she opened the door.
‘It was interesting and wonderful today with Louis. He demonstrated he knows what’s important.’
I’d looked over her shoulder towards you sitting at the table squeezing your maps and biting your tie. You didn’t look up or across at us.
‘We’ve been talking about Louis’s wider family. I asked him, “Who is Mary?”’
‘“She’s my grandmother,” he answered, “she loves me very much.”’
SEVENTEEN
I arrived home on Friday at midnight, crept in and up the stairs; I heard your brief cries in your fragile sleep as I passed your bedroom door. The next morning after sorting the chores, the piles of washing, I had stood in fields nearby and pushed my body into hedgerows to pull blackberries off branches. You came and watched from your seat in the car that I’d parked up close to the hedges. I’d felt thorns prick my fingers and sea air brush my face. We’d gone home with a bowl full of blackberries that I asked you to hold on your lap, as we bumped over potholes on the track. I’d rubbed flour and margarine through my fingers at the kitchen table as you’d watched from your wheelchair, whooping and biting your tie as I sprinkled the crumble-mix over the apples and berries, put two large dishes into the oven and waited until they bubbled. Every moment of our time together had felt magnified, lit up sharp and bright, our everyday actions felt alive.
‘No party this year, Louis,’ I explained. ‘I’m sorry, it’s just too complicated, Lou.’ But you didn’t seem to mind at all.
*
Julia, Maxine, Judy and Liz came over to see you later that day, and Spike and Mary, Greg, Tasha and Jack were already here too. I carried the Pyrex bowls filled with crumble and placed them onto the round wooden table outside as everyone scoured the kitchen and bedrooms, found chairs to bring out and sit on.
Greg managed you out of the front door in your walking frame and I helped to step-walk you over to sit on a sturdy chair. Your plastic bowl was filled with hot crumble and covered in copious amounts of custard as you shouted out, ‘More, I’d like more, please, more.’ We sat in a circle and everyone chatted and I could feel the weak autumn rays of sunshine on my back, see it lighting up faces.
And I knew I looked drawn.
Everyone was keeping the mood happy, complimenting us on the crumble we’d made and cheerfully tucking into the food with his or her spoons. I remember noticing a pale green patch of lichen growing on the outdoor table; it was lightly curling, lifting away from the table’s surface, and I was transported back to my childhood, to a memory of a tattoo transfer stuck on my arm that was lifting off my skin, peeling like a lizard shedding its skin.
You didn’t seem to notice I was distant, you seemed happy I’m glad to say. I’d brought you a number of Landranger maps from Edinburgh including number 169. This was one that you really wanted, and you clutched it tightly along with the other maps in your hands. You rolled the maps up and then they flapped free, and you rolled them up again. Your fingers pushed and kneaded into the covers and eventually exposed the underneath cardboard. Later that evening I stuck them all up with gaffer tape as you gave me instructions from your bed.
*
Once you are asleep and I’m sitting down in the living room Greg tells me you had asked him for a car for your seventeenth birthday.
‘Oh no,’ I answer sadly, ‘what did you say?’
‘I said I’m afraid that’s not possible, Louis. “Why not?” Louis answered me back. Because of all of your disabilities, I’m afraid. It would be too dangerous. And do you know what he said?’
‘No,’ I say quietly.
‘We could just try.’
Your wonderful mantra.
But you don’t mention having a car to me this weekend.
As I am away from you all, new rituals form.
I must give the homeless man in the park some money, not take the bus, and later I walk the streets for hours to escape the feelings churned-up. Is that someone tailing me as I walk down the street? I pause by a window to let them pass. I cannot shake the sensation of being watched. My bag feels heavy, digs into my shoulder and my feet start to hurt and blister, but it feels better to keep moving and mull over what I’ve heard in this way while I’m missing you all back at home.
*
Because I’ve never been away from you for so long before. At home it’ll be noisy and hectic, you’ll be whooping and banging, being dressed and being fed. Here in Edinburgh it is silent, the silence is piercing; the silence is piercing my head.
*
I sit in a quiet café that I’ve found. It’s become my favourite place to go at lunchtime; they make fresh simple food.
And the waitress who’s served me over the weeks comes over as I stare into my soup. She’s down on her knees, her head by my bowl; her bright face is looking up.
‘Hi, I’m Hayley and I think that it’s time that we introduced ourselves.’
My face breaks into lines of surprise. It’s someone from the outside world.
‘Are you a Kiwi?’
‘Yes, you’ve got it. But what about you, what’s your story?’
When are you coming home?
Tasha has sent me a text. Greg had spoken to me last night. He told me he’d seen her laptop open with a Facebook announcement, ‘I miss my mum,’ on the screen. Now this morning I’ve got this text, so there must be something up. She doesn’t usually express herself like that. I phone her on her way to school.
‘Are you okay, Tashi? I’m afraid I won’t be back until late Friday night.’
‘Oh no,’ I hear her exclaim.
‘Why, what’s wrong?’
‘Dad and Louis are going to have to take me then.’
‘Take you where, sweetheart?’
‘To Sam’s house.’
‘Who’s Sam?’
‘He’s a friend.’
‘Oh, is he a boyfriend?’
This will be a first.
‘We don’t say that, Mum; you’re so old-fashioned. He’s asked me over to his house for the evening.’
‘Where does he live?’
‘On the other side of town in a village, I can’t get there without a lift. I don’t want Dad and Louis to take me, but I can’t get there otherwise.’
‘Look, Tasha, don’t worry, I’ll find someone to look after Lou and then Dad can take you on his own. When is it and at what time to and from?’
Tasha’s silent down the phone.
‘I don’t want Dad to take me either, I want you to. He’ll talk to Sam’s parents, knowing him.’
And that’s exactly what Greg did. It turned out that Sam’s mum had given Sam a message for whoever dropped Tasha off to come in for a cup of tea.
‘It’s like Meet the Parents on the first date,’ Greg said. It’s one of Greg’s favourite films; he loves to mimic the Robert De Niro expression, ‘You’re in the circle of trust.’
Poor Tasha. It wasn’t the best way to get to know someone, have your dad turn up with you.
When I spoke to Greg later that evening after he’d brought Tasha home and you were asleep in bed he sounded happy.
‘Sam’s a cool kid, we got on great.’
‘Greg! That was supposed to be Tasha’s date.’
I can picture the scene. It was just what Tasha had known was going to happen.
I’ve missed your school Christmas fête because of being up here in Edinburgh. Greg takes you instead.
‘That was hard work,’ he tells me down the phone. ‘Louis was obsessing about seeing Father Christmas. He made a beeline for the grotto in his walking frame. I was holding tight onto the back bar pulling him back from knocking over other children in the queue. He wouldn’t wait.’
I can picture it all; I’ve been there before. Each year you come up with something obscure that you want for Christmas and get overexcited. Last year you wanted a Sound Beam, repeatedly asking for one. I knew what one was as there was one in your school. It consists of a number of poles on stands with movement sensors that are positioned around you and if you move parts of your body invisible sound beams sense these movements and translate them into sounds. You rarely get to use it in school as it requires the music teacher who is only in once a week and there are other children who benefit from this equipment much more than you do, but you love it when you do get a go.
I researched the cost of a Sound Beam and it was thousands of pounds so I told you over and over again it wasn’t possible to have this for Christmas, but you didn’t seem to understand. One day you called me into your bedroom and showed me your computer screen; you’d sent a letter to Santa via a Santa website all on your own and had got a reply.
Ho Ho Ho, Louis, it’s nice to hear from you and you say you’ve been a good boy, well done Louis, well done. My my my Louis you are getting to be a big boy now, sixteen years old I see. What is this that you say that you want, A Sound Beam? Ho Ho Ho I will try. But oh dear me, I see you say you’ll be sad if you don’t get one. Now my ears always prick up when I hear words like that. You must talk to an adult about your feelings … Ho Ho Ho and a very Merry Christmas to you, Louis. I’ll try my best to fit what you want in my sleigh.
You’d been watching my face as I read. This was something new for you, to look for an emotional response in me. As I finished reading I looked over to you and you cried out.
‘He will try.’
‘But Louis, it’s too expensive.’
But you just giggled with joy.
I did Internet searches but there was nothing second-hand and then I had a brain wave and rang the Sound Beam Company to see if they had any old equipment for sale. They said no, it was rare for their equipment to come up second-hand. I was about to ring off when the woman interrupted my goodbye.
‘Wait a minute. I don’t like the idea of your son being disappointed on Christmas Day. I’ll need to check with my boss, but as we close over Christmas and New Year I’ll ask if we could lend you one of our demo sets over the Christmas holidays.’
I was amazed at her offer.
Last year you opened a box on Christmas Day and squealed in delight. There was a Sound Beam. You didn’t mind at all that it had to be returned shortly after.
‘What did Louis ask for this time?’ I ask Greg.
‘He asked for a hot tub.’
‘What! A hot tub!’ I laugh. ‘Where has that come from?’
‘He said Mrs Philips has one in her garden.’
Mrs Philips is one of the learning support assistants in your classroom. She is lovely. She has a radiant face, a warm personality and very large bosoms. She is always extremely complimentary about you.
Greg continues, ‘Then when we got home the other kids heard what Louis had asked for and they agreed that they want one too.’
‘So what do you think?’
‘There’s no way we’re getting a hot tub. We can’t afford a decent one and a cheap one will break, that’s for sure.’
When I do get home for Christmas this year I’m afraid you don’t get the hot tub you asked for. I have managed to collect an enormous number of Landranger OS maps from the Oxfam shop in Edinburgh. You are perfectly happy when you discover these are your main present on Christmas Day. We put up a second shelf in your bedroom and place all your maps in numbered order, and then we make a list of all the ones you still have to collect; you’re doing rather well, we see, when we look at the list.
You don’t mention the hot tub you asked for at all, thank goodness.
It’s New Year’s Day morning and I can hear you’re awake in your bedroom as I come downstairs to dress you and give you your breakfast. I open your door.
‘Louis, do
you want to go down to Little Haven and watch the New Year’s Day swim? Dad might do it.’
‘Yes,’ you say back.
‘You’ll need to be quick,’ Greg calls down the stairs, ‘it’s at nine thirty this year.’
‘You go ahead with Tasha and Jack, I’ll catch you up with Louis,’ I call back.
The old car door slams and Greg speeds off down the drive; he doesn’t want to miss the beginning and neither do I, but it takes time, it always takes time to do all the preparations to get you ready.
I lift the wheelchair into the car boot, make sure your coat is zipped up tight, then we follow Greg’s route down to the village. As we come down the steep hill, turn the corner towards the seafront there’s a crowd at the wall and a number of people I recognise, some in their swimming costumes, standing ready to go into the sea on the slip. I see Andy Grey ready with his loudspeaker and horn as we drive by and up to the car park. I hoick the wheelchair out of the boot and wheel it around to the passenger door, take the bunch of maps from your hands and tuck them under my arm trying not to drop them as I undo your car buckle. You make no attempt to move.
‘Come on, Louis, we’ll miss it,’ I encourage you. You sit still, chewing the top of your coat and just as I’m losing hope you respond, lean forwards and move your legs round. I take your weight as you lean onto my shoulders and slide your legs down out of the car to the ground, and I try to pull the chair closer without falling as you manage to sit down. I buckle you in and pull the footplates down and turn you around and start to push you towards the seafront. You’re getting heavier I notice. Will we make it in time? Not quite. I hear the horn blasting as we’re heading down the short road to the sea. We reach the seafront but can’t see over the crowd at the wall, so I turn and push you up to the left past the Swan Inn to look down on the beach from a higher viewpoint. I have to push hard to get you up the hill and eventually find a free space along the wall to push your chair up close to it. Then you put on your brakes and I take your maps again and help pull you up and out to lean and look over the wall down into the water. There in the sea are some swimmers dressed up in fun outfits, splashing around, but most are running out of the water back up the slipway, their bodies rose pink from the cold.
