by Alison White
‘Louis does not understand “no” and this upsets Oonagh. I hope that you understand that Louis would be better choosing a different play date. We hope you understand and wish you the very best for the future.’
I carefully choose a time to tell you the answer and you open your mouth and wail. You say Oonagh’s name. You pleadingly ask, ‘Why can’t she come here again?’
*
It takes a long while for you to accept but eventually you stop asking me to try. Today I hear you singing her name. I hear your voice break into a song. You sing a short phrase to yourself as you sit in your bedroom alone.
‘Oonagh? Yes, Louis. Oonagh? Yes, Louis.’
You sing it joyfully, today, tomorrow, the next day, over and over again.
We need to go to Edinburgh but you don’t like going anywhere for more than a day. You haven’t stayed away overnight for years, not since our trip to London. It was the disastrous trip to Holland that started it; we have been struggling with getting you to travel again ever since.
We’d thought that a trip to Holland was a good idea. I remember the excitement in the build-up. We were going on a summer holiday abroad. We were going to do something ‘normal’ like other families do. It never occurred to us you would not comply. On that trip you managed to cry for a full six days. Our marriage was at the point of breaking.
We’d thought carefully about how to have a good time with you and Tasha and Jack. We’d chosen Holland because it was flat, and had booked a holiday park with bikes and a pull-along bubblecar for you. There were forests and a pool. Tasha and Jack were beyond excited about the idea. It had still been a daunting prospect, with your toileting, feeding and physical care, but we had thought it would work.
As the plane rumbled down the runway you had begun to scream and you kept it up. It hadn’t occurred to any of us that you wouldn’t be able to travel.
At the holiday park you asked, ‘What is a holiday?’
‘It’s meant to be fun, Louis. We explore, enjoy the sunshine, go for rides, see new things, go to the pool, relax.’
‘I don’t like holidays. I want to go home.’
And so it persisted. All you wanted to do was watch CBeebies, which didn’t exist in Holland.
Greg went into shutdown. He could not cope any more with the screaming and became silent and I found myself like a single parent taking you all down to the pool. Tasha and Jack were happy using the water slides and Randy, the pool attendant, saved the day. He gave you lots of attention, helped to carry you up the steps of the slide as I caught you down below, but God it was hard.
‘Never again,’ we had said when we got back and it’s become a family joke that you don’t like Holland. You call the Dutch ‘Ditch people’ and like to scream when Greg plays ‘the holiday game’:
‘Hey Louis, why don’t we go on a little holiday?’
‘Nooo!’ Screams.
‘Ah come on, Louis. Let’s go to Holland.’
‘Nooo!’ You scream louder, ‘I don’t like Ditch people!’
‘But Louis, it will be fun.’
‘No, no, no!’ Screams.
‘Okay, let’s stay at home then.’
You erupt into giggles at the kitchen table.
*
And now we need to go to Edinburgh.
You’ve been screaming loudly about not wanting to go, but we haven’t got any choice. We need to fly up the night before to be there first thing in the morning for an assessment and then come straight back home.
‘We are going to have to stay somewhere, Louis, but it will be fun. You’ll have me and Dad with you.’
You continue screaming loudly.
‘How about bagpipes! You’ll get to see some of those when we go up.’
This takes you a while to process. You stop screaming. You look thoughtful. There’s a very long pause. You stuff your tie into your mouth and give it a chew and then you pull it out with one of your hands. You drop your maps and both of your arms start to wave up and down in the air and whack onto the kitchen table, your voice making whooping guttural sounds and your legs join in kicking under the table. You are so excited you can’t control your body actions.
‘I want to see bagpipes.’
*
I’ve found an apartment with kitchen facilities close to Princes Street for the night on special offer. I find people to have Tasha and Jack overnight and we are off on the journey to Bristol airport. As we pick up our tickets, you look up from your wheelchair and tell the tall man behind the counter that you are scared. He answers you with a deep Scottish accent.
‘Och don’t be scared, you’ll have fun,’ he says with a big smile, and you grin back at him with the tie still stuffed in your mouth. I can tell that you like him; you like friendly men with a sense of humour.
*
Your habit of touching people inappropriately in the groin has been increasing recently. This latest compulsion is a disaster to manage and makes it difficult to take you anywhere near other people. The more we mention not doing it the more you do, so we have to ignore your actions. I’ll say, ‘Touch your bracelet, Louis,’ (I’ve put a knotted cord around your wrist for this) and at the same time I’ll try to distract you. ‘Oh, look over there at that, Louis.’ You don’t realise how serious this latest compulsion is. It’s been creeping up for years, just an arm outstretched so people moved their bodies away, but now it’s a full-blown swipe. Initially I think you liked how the touching made people jump. It would make you laugh the same way that you laugh at Mr Bean. But now you are compelled to take a quick swipe at people’s groins every time. It makes them jump back, gives them a shocked and embarrassed look and you think it is funny.
‘No, no, Louis, it is not funny, it is very, very serious.’
‘It is rude,’ you say with obvious delight.
You are at whatever the developmental stage is for taking delight in rude things but the problem is you are older and therefore it is treated much more seriously. Your school has begun filling in ‘incident’ forms whenever you take a swipe at another child or member of staff; they’ve been teaching you it’s ‘not appropriate’. And you howl now because you don’t want to be near enough to touch anyone. You don’t want to be ‘naughty’. It’s so complex to manage how best to cope.
*
We are going through security. I have to push you through the metal detector screen in your chair and the alarm goes off.
‘Please can you go back and go through on your own?’ I am asked.
I pass back through and the alarm is silent.
‘I’m afraid I’ll have to do a quick check of your boy,’ says the security man. He rummages behind your back, along up your legs and swiftly across your groin.
‘That was rude, Mummy!’ you say with a wide smile. ‘That was inappropriate!’
*
We use the airport’s disabled service, which requires us to wait while everyone else boards the plane first. You sit patiently in your wheelchair holding your maps tight and chewing your tie. The lift takes us up to the front door of the plane. We abandon the wheelchair and Greg and I step-walk you into the aircraft. The flight is full. People look up and watch us approaching, we are a few rows in; children stare, others look away not wanting to appear rude. I’m trying to balance you and stop you falling over. I’m also aware that you might try to touch someone. The flight attendant smiles.
‘Are you okay there?’
She has bleached blond hair and orange foundation on her face. She is wearing a tight fitting grey pencil skirt and black high heels.
‘Hello, I’m Louis, nice to meet you,’ you say and hold out your hand. She shakes it and you hold on tight. You don’t let go but grip her hand hard. She keeps smiling. I’m impressed. She’s professional.
‘Are you on Facebook?’ you ask her.
‘Yes, I am.’
‘Will you be my friend?’
‘Of course, Louis, of course.’
Greg’s getting flustered. ‘Come on
, Louis, let go of the lady’s hand.’
You let go after a bit of tugging by me and we manage to get down the aisle to our seats.
Phew, we’ve survived the first part of this journey. Oh no, bloody hell. In the three seats in front are three heads poking above the head rests and the middle one is bald and shiny. Your arm is out and you’ve managed to touch it before I have time to grab your hand. The man jerks and turns slightly.
‘I’m so sorry,’ I say quickly. ‘No, Louis, don’t.’
Greg hisses with rage, ‘Louis, stop it.’
I hold onto your hand tightly. Your other arm is lifting and Greg’s grabbed it. We are both sitting there holding your arms, linking ours through your own. Your body jolts as each arm compulsively lifts and one of us manages to hold it back. Greg is sweating; he is beetroot. ‘Stop it, Louis,’ he whispers into your ear but you can’t, you just can’t stop yourself.
The plane is taxiing down the runway.
‘When we take off I’ll swap seats,’ I say. ‘I’ll put Louis on the aisle seat.’ At least then it won’t be shining in front of you.
We swap with difficulty and I hold your left arm. From your new seat you make a half-hearted attempt to stretch your right arm to touch the bald man’s head.
‘I can’t reach,’ you say.
‘No, you can’t; you can’t reach him now,’ I whisper.
You can reach if you really tried. We both know it but if we pretend, it works. You look across the aisle and start stretching out your arm but you keep it bent.
‘I can’t reach there either.’
‘No, you can’t.’
You start to relax a little. You grab your maps off your lap and hold them tight, chew your tie. You are quiet. I hold your left arm tight and feel the urge like an electric shock run through you over and over as your arm tries to rise and is stopped. In time your urge reduces. Halfway through the flight I can feel myself relax your arm hold a little, you’ve settled at last. Greg has shut his eyes; his head is against the window. We knew this journey was going to be an ordeal; we know we have to get through this somehow for your sake.
The flight attendant is coming down the aisle with drinks. She is passing us by. I notice you looking. You look over towards Greg, his eyes are closed; you look back to the aisle, back towards Greg then very quickly you reach out your right arm and quickly touch the flight attendant’s bottom. She gives no reaction, makes no sign it happened.
*
We have made it. I am pushing you up the hill from the airport bus stop at Waverley Station towards Princes Street. Where are the damn bagpipes? Usually there’s a piper on the corner but this evening there is no one. You are getting anxious.
‘I want to go home.’
‘It’s fine, Louis. Just one night and then you’ll be home.’
And then I hear the distant whine of the pipes coming in the direction of Princes Street towards our apartment. You start to help with the wheels, pushing them in excitement. We reach the top of the hill and I see a short man with dark hair, a very round belly and a green tartan kilt; he’s filling his cheeks with air. I push you across the road as Greg pulls our bag behind. You are pushing the wheels of the chair with a force I’ve not felt before. You break away. I’m running, and shouting, ‘Louis watch out!’ A woman jumps out of the way as you head straight for the piper. I grab the handles just as you slam on your brakes to stop dead beside him. The piper stops playing.
‘Hello, I’m Louis.’
‘Hi, Louis, I’m Rocco.’
‘Will you play “The Flower of Scotland” for me, Rocco?’
‘Sure I will, Louis.’
*
What were the chances of that? That Rocco would be positioned directly across the road from our apartment? His music follows us into the building and we open the window so you can hear him until he stops. We get through the night with you waking and needing help to the toilet twice. You thrash in your bed and hit your head against the headboard. I pile the pillows up high behind you to try to help, and the staff downstairs upgrade us all for no extra charge, say there is a bigger room we can have. The kitchenette is perfect: we can prepare your food, mash it and feed you without the stress of finding something you can eat that is runny enough for you to swallow.
*
The next day the assessment is over by lunchtime and Greg and I have a plan to surprise you. Before going back to the airport we push you over to Haymarket Station. Across the road from the railway entrance is a shop that makes its own bagpipes. In the shop we buy you a set of Highland pipes to take home. The bag is made of synthetic material that makes it cheaper, but they sound the same and are easy to play. You’ve been asking for bagpipes for years and now you have got some. You know you won’t be able to play them but you want Greg to do it for you.
Greg has a go in the shop. He blows down the chanter and fills the bag, pumps his arm up and down and it begins to drone, so he moves his fingers. It sounds impressive, bagpipes with a touch of the Eastern.
Your arms flail about in the air and your voice makes guttural sounds of excitement.
*
So we survive the trip to Scotland. It was even a success of sorts; it certainly beat Holland, that’s for sure. Once we get home and are somewhat recovered I ask at the kitchen table over breakfast, ‘Hey Louis, that trip wasn’t so bad now, was it?’
‘I didn’t like it.’
‘But Louis, you met Rocco, you got some bagpipes.’
‘I didn’t like it at all,’ you say firmly.
I bend over and rest my elbows on the wooden table; I’m at eye level with you. I ask in an inquisitive voice, ‘Do you think that maybe sometime we could all go on another trip?’
You start screaming immediately.
David is carefully step-walking you outside the warehouse. You hold the handrail on one side and David holds your arm on the other as you slowly make your way down the ramp. At the bottom David turns his body towards the three steps but you don’t move. You stand still, holding the rail tightly, wobbling.
‘Shall we try the three steps then, Louis?’
‘No.’
‘But I thought you wanted to try the steps?’
‘Not those steps.’
You have lifted your head slightly and are looking across the car park past the Bristol Trader pub and over the road towards the tree- and scrub-covered embankment. I’ve never given that area a glance. We all look. There, cut out of the steep rock face, are lots of concrete steps with handrails and resting platforms and benches. It is an ugly sight. The handrails look dirty and cold, the concrete is rough and stained, the first wooden bench looks rotten. How have I never noticed those and where do they go? The steps rise up into woodland. There are over one hundred in view. I will come to discover from you counting them one day in the future, one day when eventually you precariously manage to reach the top with David, that there are 155.
‘I want to go up there.’
We laugh incredulously. David answers.
‘Well, Louis, that may take a little while longer before you are ready. But it is something to aim for in time.’
You drop your head and I hear you say quietly, ‘Just try.’
It’s David’s birthday tomorrow. During your physio session you ask him a question out of the blue.
‘How old will you be?’
‘I’ll be forty-nine, Louis, I’ll be forty-nine.’
‘Oh, you are getting old.’
‘Well, what about the big five-oh next year then, Louis, how about that?’
‘You’ll be dead soon,’ you reply.
‘You’re between a rock and a hard place.’
Mr Monsam is sitting back in his swivel chair and moving it from side to side as he speaks. He has a busy air about him. He’s studied you quickly and carefully and is wasting no time in telling us his thoughts. I can tell he has a limited amount of time to spend on us; I can tell he’s been working all day; I can tell this is probably the case for him day
after day. I am putting your long socks back on, gently trying to get you to relax your foot, to twist it straight and edge it into the splint. Eventually it’s on and I am able to slip an enlarged shoe over the top.
‘I can see that the surgery has had a negative impact but you’re managing to rectify it as best you can. As a surgeon it can be better to keep away at times. In Louis’s case if I did anything further he could end up in a wheelchair permanently. We have to face that he is likely to deteriorate over time but this is better than risking forcing him into a chair right now.’
He pauses.
‘I wish all of my patients were like you,’ he says to you with a smile. ‘Louis, you have fine thigh muscles and a strong upper body. Your exercise programme is excellent. Walking and swimming are two forms of exercise I can’t recommend enough.’
‘This is partly why we have come. Our local physiotherapist is concerned we are over-exercising Louis.’
‘I beg your pardon? You can’t over-exercise. Louis will let you know if he wants to stop. I think your biggest concern is his skin right now. It is breaking down from the splints rubbing. If this continues he will not be able to walk at all due to the risk of infection and pain.’
‘Well, this is it, the splints are meant to help Louis’s incorrect positioning but they hurt him. They are concerned we might be damaging his joints through the exercise.’
‘Well, it’s either that or he’s in the wheelchair permanently from now. Where’s the logic in that?’
‘What do you suggest that we do?’
Mr Monsam ponders a short while.
‘I think the splints should be discontinued. I’m not allowed to say the brand of boot in the letter but I suggest you try Dr Martens boots. They will be able to offer Louis flexible support without the fixed structure of the splint. And you’ll look cool, Louis, too.’
I feel incredulous. I’d never thought of this as a possibility. I feel an enormous sense of relief; thank goodness I’ve found this doctor, he seems very experienced.
