by Alison White
‘Do you really think this is worth the effort? A one hour journey across the whole city for just twenty minutes, is it actually doing anything for him?’
*
You’ve been going for music therapy for a couple of months now after Brian offered to see you in his lunchtime. I haven’t been able to take you myself; I can’t carry your weight in my pregnant state.
‘I’m not sure if it is,’ Greg answers. ‘Nothing much seems to happen. He just plays the piano and sings a bit and then says, “That’s it, we mustn’t hurry things.”’
Screams erupt; you’re prone on the floor on your back thrashing your body, banging your head hard, howling.
‘Louis, what’s wrong, why are you screaming? What is it? Hey, were you listening? Do you want to go, Louis?’
Your crying stops abruptly.
FIVE
Your brother Jack has been born; it’s November and at last I feel that you can be you. I no longer crumple when I watch little boys play football in the park. I have one of those now. I know it seems wrong that it’s taken this for me to be able not to wish you were different.
It is Natasha who reacts with shock when Jack is born. She gets down on her hands and knees and makes wailing sounds, crawls around the flat like a baby. You watch her incredulously then collapse with delight into giggles.
Natasha comes to find me when Jack is six days old. I’m in bed propped up on pillows quietly feeding the baby. Tasha tells me, ‘You can give the baby back to the hospital now. I don’t want it any more.’ And this moment reminds me of you when Natasha was born. You came to the hospital carried high in Greg’s arms. You did not want to look at the baby; you twisted your body away and squealed, lifted up your arm and pointed repeatedly, over and over, towards the hospital bedroom door.
Grace is in your class when you move up from the nursery to your first classroom. Grace’s cerebral palsy is severe and she has to be tightly strapped into her special wheelchair and standing frame. She enjoys all the games in the class with your teacher Val and she is absolutely determined to try. Her body rotates and arms twist preventing her from doing the things that she wants to do, but she is managing to communicate her needs through pressing a pad on her tray and she clearly understands what is going on around her.
Dylan is also here. Dylan makes my heart lift with his cheeky smile. He’s rather like you: he’s thin and wasted, but he wears tiny steel-rimmed glasses and he’s happy all of the time. He sits back on his folded legs on the floor and unlike you he can rise up on all fours and crawl. He likes to crawl over and speak to me if I come into class – unlike you and the others, he can talk. He smiles and cocks his head and likes to ask ‘why?’ to every answer in my reply.
Your teacher, Val, is a hoot. She has the widest mouth and smile and an enormous amount of energy to cope with all of the four children’s needs in her class. She has an assistant, Trisha, and they like to call you ‘Banana Man’ because of your love of a mashed banana every day for your morning snack and your gesturing continually for more.
You’ve always loved bananas. I still can’t quite believe the day last year when I barely dared to admit now how many bananas you ate. I had pushed you around the park as you squirmed and screamed and had sat in the grass under a tree with my best friend Rowan. I had a bunch of five bananas with me. While Natasha and Rowan’s son Brody toddled around, you sat with your mouth held open wide and made a sound that meant ‘more’, as I mashed with a fork and then spooned the banana in. When I’d finished number five you’d continued to cry so I’d left you with Rowan to buy another bunch from a distant corner shop. When you reached number ten and still asked for more I had to refuse. And the strange thing was that your belly didn’t swell. How that was I cannot tell.
We keep being told by the speech therapist at your school that your understanding is limited. She makes you use her PECS book, containing basic symbols of things that you need or want. There is a picture of a Weetabix, a cup and a banana for you to point to. No wonder you ignore her. No wonder you push the book away. You can make sounds for these things that I can recognise; you babble and I know what you mean. You refuse it at home; I can see that you want to communicate more.
*
You cannot read, well, not as far as I can tell. I read to you in your bedroom with picture storybooks. I try and help you to understand the words. I trace my finger along the pages in the hope that you will begin to pick up on what those words mean. And I’ve noticed you respond to rhythm and rhymes, particularly poems by A. A. Milne. I read you ‘The King’s Breakfast’ over and over, you love all the changes of voices, the king and the queen and the dairymaid and the cow; you are enraptured.
*
And your grandfather Spike plays ‘video’ with you when he comes to visit and help. He takes all of the videotapes off the shelves in your bedroom, takes them out of their boxes and scatters them across the floor. You love this game. You bottom shuffle around the room and match the tapes back to their boxes.
‘What do you think?’ Spike asks me. ‘Do you think Louis can actually read?’
‘I don’t think so.’
‘Neither do I, but look, he can link every tape to the right box so he can recognise through the letters and marks somehow which belongs to which. It’s a start.’
Your arms wave in the air in spasms; your legs kick uncontrollably on the floor and your voice makes guttural singing sounds of excitement as you wait to play the game again. And now you like to be timed as you do it. Spike’s clever like this. He can think up a game for you to play that is fun and exciting for you. How quickly can you match them all up? You squeal as you grasp each box and shove the tape in.
*
But you are cleverer than any of us realise. Look at what you have done with the school/home book. This book has become your form of communication with us.
It is a miraculous development. I didn’t realise it at first. Each night as I lie on your bed and try to read you a story you hit it away and shove your rolled-up schoolbook into my hand. You’ve rolled it up tight into a tube and I unfold and open it. First I read out what has been written that day for you in school and then I get out the pen to fill in what you have done that afternoon and evening at home. I read out the teacher’s words and then I begin to write my own. You listen intently and make babbling noises as I talk.
‘And then you did this, didn’t you, Louis? You enjoyed playing a game of video with Spike and you put thirty tapes into their boxes in four minutes and fifty-two seconds. And then you had lots of mashed bananas and custard. I gave you three and you were pointing for more.’
After I’ve finished writing you pull the book off me and open it at the first page and motion that you want me to read it to you. You want me to read the whole book. As the book fills it takes longer and longer to read to you each night until I’m saying, ‘Louis, Louis, I can’t read the whole book, it will take all night. I’ll read fourteen pages.’
And you take the book off me and pick, choose a page where you want me to start. You see, we do communicate and we can communicate, you clearly understand what I say to you. It takes me a while to realise that you are doing more than just listening to your daily life events recounted: you are learning the book off by heart. You need me to read it over and over again until one day you pull the book from me when I ask you what we should do tomorrow. You uncurl the book, turn over pages with your stiffened fingers and point to a page. I read it out loud and it mentions visiting Simon, Rowan, Brody and Ryan. You are getting excited, kicking your legs.
‘Louis, do you want to go to Simon and Rowan’s house?’
You tap my ‘yes’ hand.
And I find that I daren’t open your bedroom door sometimes now in the mornings. I hover outside waiting to hear a hint of a noise from you. I find I am scared. You’ve not woken or called me at all. All is silent and quiet. Are you alive? Have you made it through the night this time?
You don’t realise, you don’t know that
people are frightened or nervous or just a little bit unsure of what to say or do with you. They don’t want to say or do the wrong thing and I can understand why. But you like everyone. You want them to see your book, the book that I write in every day and night. You want them to see it and read it out loud and they soon come to understand and then you want them to write something too. You want them to add their name and say something about themselves and what they are doing with you.
And people do.
I deliberately leave. I make an excuse. ‘Just getting the cups of tea’ or ‘Just nipping to the loo.’ It gives them time to be alone with you; time to see that there is nothing to be scared of. By the time I come back the relief is visible on their faces and the happiness on yours as they read out loud something shared and you giggle with joy.
*
That is what I have learnt: you have no capacity to judge. You do not notice other people’s awkwardness; you just instantly like them, whoever they are, and if they will just help you communicate, you are grateful for their time. It’s amazing how good that can make someone feel. Once upon a time a couple of friends – Cathy and Torston – were visiting and I lost them in the house. I found them in your bedroom sitting on either side of you. Both were beaming.
‘We’re just getting a bit of Louis therapy,’ they laughed.
You have reached five and you still suck a dummy and I’ve started to feel a sense of shame that I let you, but what can I do? You appear to love them so.
I’ve started to pop the ones that I find around the house into the bin and let you see. I say out loud that maybe it’s time to stop now, but your fingers wrap tight around the loop of the one in your mouth as I speak. You’re not letting go yet. We are down to the last few in the house, then down to two and now there is one, just one always with you.
*
We are driving. You sit in your child seat in the back of the car. Your left hand holds the belt of your seatbelt tight. You are sucking on your dummy making contented humming sounds. I look at you in the mirror and your face looks calm, your head is slightly turned to look out of the window. It is good to have you quiet. Is that bad? I begin to feel my body relax; I’m enjoying the peace of this moment. I hear the electric window lower behind me. I look in the mirror and your right hand is raised to your mouth, your fingers hooked around the loop and you pull, your lips suck and the dummy is out. You lift your hand to the window and let go.
‘Louis, that was the last one.’
You don’t register that I’ve spoken to you but make contented ‘ahhing’ sounds in the back.
For years I dream of you walking. You are standing upright walking towards me laughing and I am laughing too. I wake elated believing it to be true and within seconds realise it is not. Will you ever be able to balance? Will you ever walk? You seem to be too top heavy. Your legs are like sticks. How can they possibly take the weight of your body above? I think as the latest physiotherapist, Agatha, tells me again that you are not far off; it should come within months.
*
Your feet are small and very slender. They twist a little and your toes screw down tight when I try to stand you on the floor. You don’t lift onto your toes like I’ve noticed other cerebral palsy children do, your feet stay flat but they roll slightly over onto their sides. The physiotherapists don’t seem too concerned about this; they don’t mention the visible difference in your feet to those of other children.
‘He will be walking soon,’ Agatha tells me again.-
I so want to believe her, I so want her to be right, but I stare at your legs and your feet and I wonder how they will do it.
‘You need to get him some proper shoes, though, to help him.’
*
I decide to push you into town and find a Clarks shoe shop. It promotes itself as the best shoe shop for children and today I want the best for you. We are going to do something mothers all over the country do when they take their children for their first ‘proper’ shoes. There is something that feels special and safe about Clarks, with its trained staff and its quality shoes, so I’m rather looking forward to getting you your first pair of sturdy leather shoes. I push your larger pushchair, used for children as they get older who still can’t walk but who don’t need extra positioning supports. This one will carry you for a couple of years longer before a wheelchair will become necessary. These are the realisation milestones we are experiencing from ‘wait and see’ to this is what it is to be.
*
The children’s department is upstairs.
‘Do you have a lift?’
‘Sorry, no.’
‘Can you help me?’
I walk backwards up the stairs as the assistant holds the front wheels. I push you over to the counter and pull off a paper ticket and wait for a shoe assistant to call our number.
‘Number twenty-three. Hello, can I help you?’
‘Yes please, I need some sturdy shoes for my son Louis, please.’
‘Okay, we’ll measure him for his size. Do you know his size?’
‘No, I don’t. It would be good to be measured.’
I’ve pulled off the soft shoes you are wearing and the assistant produces a foot-measuring ruler. She is crouched down and has positioned herself so that she can place your foot into it. She pushes your heel into the back of the mould and pulls the fixed measuring tape across your foot, slides the metal toe cap down to your toes. I see you curl them under your socks.
‘Watch that,’ I say. ‘Louis is curling his toes; he does this.’
She talks non-stop telling me all about the importance of Clarks’ training programme for its staff, the great importance of getting the shoe size absolutely right.
‘I’ll just go and find a selection for you. His feet are very slender so there may be a limited choice.’
You are making happy humming sounds. You are in a very good mood today.
The assistant returns with only one box and pulls out a pair of brown leather shoes. They look perfect. She puts them onto your feet and pulls the Velcro strap across.
‘There. Now, please can you get your son to stand so I can check the positioning of his toes.’
I unstrap you from the pushchair and take your weight under your armpits, so you stand upright. Your body leans forwards and your legs are bent.
‘Okay. Could your son just walk across the room now to check they feel okay when he’s walking?’
‘Oh, Louis can’t walk.’
‘Well, he has to walk in order for me to check that they fit him correctly.’
‘I’m sorry, I don’t think you understand: Louis can’t walk.’
‘Well, I’m sorry but it is company policy. We are not allowed to sell shoes without checking that the child can walk comfortably in them.’
This is insane. She’s persisting.
I keep my voice calm and measured.
‘Well, as you can see we have different circumstances. My son needs shoes to help him, but he cannot walk, not yet anyway.’
‘Well then, why does he need shoes? Come back when he can walk.’
‘What?’
That’s it, I’ve lost it.
‘Because he’s five, for God’s sake. What do you want me to do – push him round in his socks forever? It’s cold outside – it’s winter, have you noticed?’
‘It’s company policy.’ She doesn’t budge.
‘I want to speak to your senior manager.’
‘I am the senior here.’
*
We are back out on the street. I didn’t handle that too well. I’m furious. Other customers with children had listened in silence. No one said a word. ‘Fuck you all,’ I’d shouted in my head. I carried you down those stairs by myself; my anger seemed to have given me strength. ‘I’ll be sending a letter of complaint to your head office and I’ll never shop here again. You are talking a load of fucking shit.’
You giggled in the pushchair. You find it funny when people seem angry or upset. You seem to find
the f word particularly funny; you appear to know it’s a word I shouldn’t use. You seem to know a lot given that you still can’t speak. Is it my gestures? Are they comical to you? I often ask myself this when you double over in laughter at someone else’s distress. I don’t think it’s because you are scared; you don’t appear so. You seem to enjoy the drama.
How calm can I force myself to be? It just erupts sometimes. The stupidity! I try to remind myself that anger gets me nowhere, just eats away at me. It’s just ignorance I’m facing. I could have handled that better.
But it’s hard. It’s hard sometimes.
Agatha refuses to sign the form that enables us to purchase a special walking frame with a seat, like a large baby walker. You are too tall now to use the baby ones, you topple out. I’ve done my research; I’ve found a manufacturer with the exact product that we need. I was so pleased that one existed for you and I don’t even want her to fund it. I just need her to sign the form as your physiotherapist to enable us not to have to pay VAT.
‘I really feel that this piece of equipment is unnecessary, a waste of money. Louis will be walking within a few months. This could even hold him back.’
‘But he can’t walk right now. He cries most of the time; he’s bored. This would help him to explore, otherwise he just bottom shuffles everywhere. Surely being upright would be better and may strengthen his legs?’
‘Well, I’m not prepared to sign. He’ll be walking within three months.’
*
I can look back now and tell you that didn’t happen. You didn’t walk for years and years after this. But Agatha never stayed to learn that she was mistaken. She was gone within the month. She’d moved on to a new post elsewhere.
