Letter to Louis

by Alison White

  And the darkness deepens.

  I dream that one day we will have the help that we need today; that one day we will be saved from this struggle, exhaustion and despair. One day we can die peacefully because we will know that you will be provided and cared for, for the rest of your life.

  You stopped holding your folded five pound note and moved on to a notebook. You would go over to people and shove it towards them and I would explain that you wanted them to write in it. As they opened the pages they would see all the other messages and grasp what to do. You would carry it tight in your hands, your fingers squeezing the cover, the card disintegrating within weeks. I learnt to buy you hard-backed notebooks. Now you have moved on again. Now your favourite things to hold are maps: ordnance survey maps, the pink and the orange ones. I’ve put up a shelf in your bedroom and the number of maps you’ve collected is growing. Your favourite maps are north and south Pembrokeshire. There are 204 pink Landranger maps to collect and you’ve started; you only want ones where people you meet live, or used to live, or places they tell you about. You take a pile of your maps everywhere with you. You hold five, six, seven, eight of them in your hands. They are constantly ripping and tearing; you ask me to sellotape them up. It has become a bedtime routine: I sit on your bed and you pass me the maps that need rescuing. Dotted over these maps are crosses marking places where people you have met actually live. A part of your brain understands: you are your grandfather’s grandson; Spike has been drawing maps for years. My good friend Bab’s husband John has heard about this and has sent you a bag through the post. It’s not any old bag – this is a Czechoslovakian Tank Commander map bag. I am impressed and so are you. It is rectangular and made of brown sturdy leather. You put all your favourite maps inside the bag and hold on to it tight. It goes everywhere with you for a number of years and my sellotaping duties decrease until suddenly the bag is discarded in the future; you are back to holding them loose again.

  Today and from now on if we go anywhere you need your maps with you. If I pick you up from school they have to be waiting in the car. They seem to act as a security blanket and a soother; they stop you hitting out – instead you squeeze them tight when you feel anxious. Later you will add an address book to this pile. You will work out that if you get a person’s postcode you can find where they live on Google Earth. Later when I enter your bedroom I will find you silent, staring at your computer screen as you drive down roads from here to a new there.

  When the provision of respite eventually comes the silence stuns. One full day and night every fortnight and with it comes guilt that I could not cope.

  I stand still in your empty room, my constant activity halted: you have gone. Your suitcase was packed, the items list filled: socks, pants, PJs, dressing gown, trousers, shirt, jumper, tie. Tie? Yes, a tie, you love wearing it. It’s for you to chew or else your clothes will be chewed to shreds. Medicine bag, washbag, wheelchair, walking frame, your maps in their plastic case to clutch tightly to take into the shower with you, take into bed.

  Just one night. Tomorrow you will be home again.

  The house is silent and my mind unravels at what it wants to be able to do but my body will not let it. My body needs to sleep.

  *

  I had thought that the respite would release the rest of the family. That we would be able to do ‘normal’ things for one day a fortnight, take trips out together, visit friends, eat out for a treat. This does happen eventually and the respite is increased to one day a week also but not at first, not for a year at least. Instead Natasha and Jack erupt. They bicker and shout at each other and fight for attention. Then there is door slamming and tears. ‘What the hell’s up with the kids?’ Greg asks. Have we damaged them? Have we traumatised them having to witness all of your needs for so long? They have been waiting in the background for us to be able to give them some time and attention. They must have known there was no point before. Now they shout and cry and we listen, try to make up for all that’s gone on.

  Much later, when you turn eighteen as I write this story, your brother and sister seem happy and content. Our friends with young children will tell us they want their children to grow up to be like ours. They will comment on how open they are, how kind and caring they are towards you, to little ones, how active and interested in life they seem.

  There are no guarantees; I know that things could change in an instant, but at this distant moment in the future as I write I feel some peace and relief. We are getting towards adulthood and we are all still together. They care about you even though you are still annoying Jack with your touching. We are all speaking, joking, laughing somehow.

  THIRTEEN

  We’ve moved house down the coastline to a property close to a village where Jack’s primary school is. Tasha’s about to start secondary school in the town where your special needs school is based. The logistics of getting you all where you needed to be hadn’t worked where we were. And Jack had no boys to play with at all in the old village. He’d wander the two streets on his own kicking stones past empty holiday houses, he’d spend hours outside alone just to get away from your noises. Our ‘dream’ house hadn’t worked. You were able to hear every sound through the timber framed walls, you could hear humming sounds and your screams were becoming louder and louder.

  We got lucky. A rare house without neighbours had come onto the market and it’s perfect for us. The holiday season had just ended and the house price had been crazily slashed by a third. It would have been snapped up immediately if it had come on in the springtime but instead we had a chance to buy it. We borrowed all of my parents’ retirement savings (which we eventually managed to repay when the other house that we built was sold) and our offer was accepted. We’d lost the chance of making money through holiday lets but this new house had other potential. Maybe we could set up a campsite in the field that has come with it instead? When word spread that the new house’s price had been dropped so dramatically people had clamoured and phoned the owner making cash offers, he told us, but he refused. He said he would wait for us: he wanted children in the village, people living here. What a star, which it turned out he was: he’s the local celebrity, a famous ex-rugby player. Our new house will always be known as his. The postman, the deliveryman, even the council will say, ‘Ah, you live in Peter Morgan’s old house, do you?’ When we have a chimney fire next year, even the firemen will ask us which bedroom Peter Morgan had slept in!

  At last your sounds are more muted and we all find it easier. Tasha and Jack have bedrooms upstairs away from your squeals. We still have to sleep above you, we can’t make either of them do it, but it’s not quite as bad. And in your bedroom there’s space for a piano, bought by your uncles Peter and John; you can have a commode next to your bed for the toilet at night-time, and your wheelchair can turn around easily in there. And downstairs, but away from your bedroom, there is an open main living and kitchen space through which you can bang your walker up and down, and in which we can talk when you are asleep.

  Greg misses the architecture of our old house; I miss the wood, the glass and the light, but it was too remote, it feels better to be a bit closer to life.

  *

  And Kevan the builder’s face brightens when we introduce him to the new owners of the house that he built. They are wealthy holiday homeowners with lots of work for him to carry out. He’ll re-sand and varnish the beaten wood floors and plane down the dented doorframes. He’ll upgrade the kitchen and take out the cast iron bath that we’d struggled to get up the stairs. He’ll rip up the beautiful oak deck at the back that I loved and he hated, and give it away as firewood and instead put down concrete blocks. He’s so pleased to have ‘his’ house back; he is able to tidy it up.

  ‘Why did you do that to me today, Louis?’

  Natasha has walked through the front door, dumped her school bag on the floor and continued through the living room into the kitchen, where you are sitting at the table eating your after-school snack. You ignore Natasha and
instead stare ahead and lift your spoon heaped high with rice pudding and place it into your mouth and swallow.

  ‘Louis, can you hear me?’ Natasha says standing over you.

  You stare ahead and ignore her but I detect your body waiting, ears listening for her to continue.

  ‘Louis, why are you ignoring Tasha? What happened, Tasha?’ I ask.

  ‘You know what happened, don’t you, Louis? Why don’t you tell Mum?’

  You lift up another spoon. You know we are both watching you and the edges of your lips twitch but you make no attempt to answer.

  ‘Louis!’ Natasha says exasperated.

  ‘What happened, Tashi?’ I ask.

  Tasha has recently started secondary school. It’s next to your special needs school and has a large sports field that backs up to your school grounds fence.

  ‘Well, I spotted Louis in his playground. He was sitting in his wheelchair near the fence so I took my new friends over to meet him, didn’t I, Louis?’

  You stay silent.

  ‘I said, “Hello, Louis, do you want to meet my friends?” And do you know what he did?’

  ‘What did you do?’ I ask.

  You are grinning a big wide smile. You let out a snort and a laugh, hunch your shoulders and giggle.

  ‘Go on, Louis, tell Mum what you did.’

  You are doubled over laughing now.

  Natasha gives up trying to make you tell me. She’s laughing herself.

  ‘He said, “Who are you?”’

  You are screaming again, painful shrieks, your mouth wide open, your face pink, as the sharp notes escape from your throat, reach every room in the house.

  I’ve become your newest obsession that causes you distress. I’ve joined the knife and the scissors that you need to be hidden, the blender that must be unplugged, the plastic bags that hurt your ears and the car door that must have the child lock on (you know you will pull the handle, unable to resist that uncontrollable urge).

  Not all of your obsessions upset you, some can give you pleasure. Take the zip for example; the soothing sound as the zip slides up and down. It must give you tingles down your spine, caress your ears because you sit there silent and still in your wheelchair with a distant look in your eyes as I zip up my coat or zip up my bag.

  But I don’t give you pleasure. My very presence has started to cause you distress. My every action, my every word must be seen and heard. You cannot miss a thing or a suffocating panic overwhelms you, leads to desperate screams.

  ‘Mummy, what are you doing?’

  ‘Louis, I’m just trying to make the tea.’

  ‘Mummy, what are you saying?’

  ‘I’m just trying to talk to Dad.’

  ‘Mummy, Mummy, what did you say just then?’

  ‘It is four o’clock in the morning. I was asleep.’

  You fight sleep, thrashing in your bed, calling out for me at the slightest sound.

  I’m silently weeping. The tears trickle, etching a route down my cheeks, dropping from my jaw.

  The front door slams. I slam it with a force that should splinter it to pieces. I stand in the darkness and look at the star-filled sky, the moon, feel the still black night swallow me whole.

  When I come inside later my face is swollen and cold.

  ‘He stopped screaming the moment you went out the door, went to sleep within five minutes.’

  ‘Where did you go last night, Mummy?’

  ‘Just out.’

  ‘Did you go for a bike ride?’

  ‘Is that what you would like me to have done?’

  ‘Did you wear your red coat?’

  ‘Yes.’

  ‘Did you zip it up?’

  ‘Yes.’

  ‘Will you go for a bike ride again tonight?’

  ‘Yes, Louis, I will.’

  *

  I have found a solution. Now I must go for a bike ride every night and at last you will sleep. We were doing well before that operation screwed things up again and sucked us into this Kafkaesque nightmare.

  I found David by recommendation. I didn’t hold out much hope, I had become tainted; but I gave him a call, explained our predicament.

  He said to me gently in his calm way, ‘Let me come and see if there is anything I can do to help your son.’

  On his first visit he showed me the damage, asking you to lift your foot up and down, to the side, as it hung there unmoving, in its twisted position.

  ‘He cannot move his foot,’ he said quietly, ‘and no wonder he falls when he tries to stand. His hamstrings are shortened from sitting for so long, his legs cannot straighten.’

  So that is why you are unable to lie flat in your bed, sleeping with your legs bent, slumping forwards over them when sleep eventually comes.

  You look at David with a face filled with the hope that I have lost, and your words breathe out and burn me.

  ‘You will help me to walk.’

  He answers you honestly, ‘I will try, Louis, I will try.’

  ‘Just try,’ you say back with a lilt to your voice.

  We are going to see the band Wonderbrass. They are a twenty-five-piece jazz band that play at the Druidstone Hotel every year. It’s become a tradition of theirs to come down to this remote part of Wales out of season. The band plays a concert upstairs in the dining room and then stays the night at the hotel for free, jamming down in the bar later well into the early hours. A few guests and locals like us turn up to listen. They’re lucky if they manage to have an audience of thirty in the dining room to play to on this Sunday afternoon. We sit around small tables in two thirds of the room and half the band members squeeze into the remaining area while the rest are left lingering in the corridor. As the band starts to play different members come and go through the door to allow others to join in the performance, play a trumpet or trombone solo. You sit in a dining chair in the middle of the room facing the band spellbound.

  When they come to the end of a tune you whoop and clap your hands jerkily but when they play you are miraculously silent. This is unheard of for you. Your concentration is normally short-lived; your noises are plentiful at any other type of performance we’ve ever attended, we often have to leave because of them, but not here.

  After the concert I take you up to the lead clarinet player and conductor of the band to buy a CD of their music.

  ‘Louis’s your number one fan,’ I tell him and you reach out your hand, hold onto the man’s hand tight and invite him to our house.

  Bit by bit, over this last year, your hamstrings have been massaged and stretched, your legs gradually straightened, and the pains in your body, your hips, your knees have reduced. And now you are standing up from your wheelchair. Holding tightly onto your frame you slowly rise and sit back down, rise and stand, and today you are lifting each foot off the ground, beaming, counting out loud as you take tiny steps in the air.

  My hands are shaking as I hold the digital camera from a distance to capture this milestone, something to celebrate with all those who love you. Thank goodness we have found David. He is someone at last who knows how to help you, someone who understands.

  *

  But just as I discover the best way to help you, I find we are thwarted.

  ‘We do not advise the use of a sports therapist. We strongly advise working under a physiotherapist’s instruction. We have serious concerns about what you are doing. You are over-exercising; there is incorrect positioning to Louis’s feet.’

  David has appeared at our house with a letter in his hand.

  ‘We intend to report Mr Usher to the complaints tribunal at the Chartered Institute of Physiotherapists for misrepresenting himself. This could ultimately be a prisonable offence.’

  What offence? They are not happy about the YouTube footage I have posted for family and friends of David teaching Louis to walk. I have called him a sports physiotherapist and it transpires the name physiotherapist is owned by the chartered profession. I can only say he is performing physiotherapy. I cha
nge the wording; it is my error, not David’s, and I make that known.

  *

  You hold the telephone to your ear and listen to glowing praise from your uncle Peter with an enormous smile on your face. When you come off the phone you ask to watch the YouTube footage again. I wheel you over to the computer in the living room and turn on the screen. There you are in your wheelchair wearing a jumper and grey jersey shorts and long black cushioned socks up to your knees. These socks protect your legs against sores from the hard plastic splints you are wearing that attempt to hold your twisted feet flat, and over these are a pair of black leather shoes, oversized in order to fit. Your walking frame is positioned in front and David is crouched down on his knees at your eye level giving you words of encouragement to grip onto your frame, pull yourself up, straighten your body and bend each leg in the air, make stationary steps and count. As we watch the clip to the end we see you sit back in your wheelchair with contentment on your face and I notice your chest is heaving, you are breathing deeply from the exertion of this short physical act.

  FOURTEEN

  ‘I want to go up the steps.’

  ‘Yes, Louis, hopefully you will in time.’

  I’m pushing you up a ramp into a large warehouse building down by the river in town. Helpfully, there is a small car park off to the left of the building that makes it easy for us to attend David’s sports therapy sessions.

  ‘Louis just said that he wants to try the steps outside.’

  ‘That’s a good idea, Louis, something to aim for. We’ll practise your stepping in here and when you’re ready we’ll try the steps outside.’

  Today you sit on the couch with your legs over the side. You stand and sit, stand and sit. David times how long you can stand before needing to sit back down on the couch. One second, two seconds, three …