by Alison White
‘I don’t understand you,’ Greg says. ‘This is hard to digest so why are you smiling?’
I tilt my head sideways, look at Greg and smile again.
We have to take these moments.
‘I’m enjoying feeling the sun.’
NINE
We are taking a train to London. You have been studying the London underground map for so long that I’ve decided it is time that we go. I want you to go on an underground train. You are nine years old and I can still just about lift you. I can push you in the extra-large pushchair and lift you out when I have to. If I don’t do it now we will never be able to again. You will wrap your scrawny legs around my body and I will hitch you up onto my waist, although you are getting rather long. My sister Rosie is going to meet us. We will go on the trains together. I will carry you down the escalator and stairs and she will fold and bring down the pushchair. Together we will manage to give you a day in London.
We’ve caught a train to Paddington Station. I’ve got your nappies and a nappy bag. You are rather big to balance on the toddler-changing mat in the train toilet but that is what I have to do. I’ve got thermos flasks of mashed warmed food for your lunch and tea and yogurts for snacks. I have an overnight bag for you and for me because you are going to spend the night with Rosie and I am going to visit my friends Marc and Ishbel for one night. I’m going to have an adult evening with old friends while Rosie has kindly said she will look after you.
I have no idea if we will manage the day. We got on the train at 7.23 a.m. and will arrive at noon. You are clutching your A–Z of London with a Tube map on the back; you have been excitedly saying all the train stations you’d like to visit.
‘We could go to the Natural History Museum too, Louis. How about that?’
‘No,’ you reply.
You don’t want to see daylight.
At Paddington Rosie is waiting. She helps me with my bags and we leave them in the left luggage, head towards the underground station. At the top of the stairs we meet our first hurdle: I’m going to have to lift you down to the underground entrance. At the entrance I find a station guard and he radios for assistance. While we wait we chat and he hears how you’ve come all the way from Pembrokeshire for this special trip. You pass him your rolled-up A–Z and kick your legs up and down with excitement. This man has a kind air; he is the stereotypical station guard in a children’s book, round and jolly.
‘I can see you are going to have fun,’ he says. ‘Let’s help it happen.’
For the rest of the day we are met at platforms, helped up stairs and escalators. On each section of our trip a station employee appears to be waiting for us.
‘Where are you going to next?’ they ask and then radio through to the next stop to warn them we are coming.
As I leave you later at Rosie’s flat I ask her, ‘Are you really sure you will be all right tonight?’
Rosie grins. ‘I’ll be okay for one night,’ she says.
‘Well, you have my phone, I’m not far away, just call me if not.’ And I disappear into the night.
When I arrive the next morning Rosie looks tired.
‘Well, I didn’t get any sleep!’ She’s still grinning. She comes back with us to Paddington, helps to carry our bags. We get a taxi, though; neither of us has the energy for underground trains any more. As we walk towards the platform I feel a hand on my shoulder. I stop and turn to see the kind guard who helped us yesterday at the start. He is holding a cardboard tube in his hand.
‘I’ve been watching out for you three,’ he says with a big grin. ‘Here, Louis, this is for you.’
When we get home we unroll it – it is an enormous Tube map, the real thing. It is even dusted in soot.
I can’t remember the exact day that your soiling stopped but it did. The clothes came back in your bag unused. It had taken nine months, a full school year, but we got there in the end. Now we just have the night-time nappies to get you out of. I think that can wait a while, though. I need a break.
You love repetitive phrases. Is it the musical ring that certain words have or something comforting in knowing I will respond? I don’t know, but there are certain groups of words you love me to say over and over again and I hear you saying them softly to yourself in your bedroom like a song.
‘I’m tired now,’ you always call out to me.
‘Have a long sleep now,’ I have to say back.
I cannot answer in any other way. I cannot miss out one of the words or change the phrase or your anxiety will rise, panic entering your voice as you repeat your phrase over and over demanding the proper response. This is all harmless and easy to live with. The irony isn’t lost on me, though; you fight being tired and will resist sleep at all costs. You will never allow it ever to be suggested that you are actually tired. As your head nods and your eyes flutter closed, if you hear those words, ‘Look, he’s tired,’ your body will jolt upright and you will scream, ‘No I’m not!’
It’s no problem at all for me to reply to your favourite phrase in this way, but it is a little confusing for others and impossible to explain quickly the game that you play. Whenever you see me first thing in the morning or when I come to collect you from school or just at any impromptu moment, you will turn your face up to mine and say in your lilting voice, ‘I’m tired now.’
And people will hear.
‘Ah, is Louis tired?’ ‘Are you tired, sweetheart?’ ‘He’s tired, Mum.’
‘No, no, I’m not tired!’ you scream back into their faces, hard. And then you repeat the phrase to me pleadingly and I quickly reply, ‘Have a long sleep now,’ and you go totally quiet.
Today I roll out a long sheet of paper on the living room floor. Natasha wants to do some colouring in and I’ve suggested that if I draw around her body on the paper she can fill it all in, make a girl the same size as she is. You watch and when I’ve finished drawing around Natasha you get down onto the floor and bottom shuffle over and squeal and lie down too and I draw around you and then Jack comes into the room and lies on the floor and I draw around him, so now we have three large sheets of paper with body outlines that can be scribbled on. Natasha colours hers neatly and Jack scribbles on his and you hold a pen and attempt to scribble on yours. Natasha looks over and sees that you need help so she moves over to your body shape and gives you a smiling face and some ears.
Greg has taken Jack fishing and I have taken you into town with Natasha to go to her favourite shop, a toyshop that, among other things, sells quality small plastic animals. Natasha has been buying the horses for a while now from this wide selection and each Saturday I allow her to choose three or so more for her collection at home. In the shop you watch and wait as she chooses. You don’t want anything yourself but you enjoy going up to the till afterwards and paying the money for her, folding the note up tight.
All of Natasha’s horses have names and she agonises over which ones to choose in the shop. When we get home she disappears upstairs to play happily for hours with them up on the landing. She lines the horses up all in a row and moves them around in circles, creates a stable and fields and puts small people onto their backs to ride them. She’s safe upstairs on the landing away from you but you decide to bottom shuffle up the stairs to see her. She can hear your bumps as you move up the wooden stairs and she starts to scream for me to come quickly.
‘Go away, Louis,’ she says to you as you giggle; she knows if you get any closer you will knock them all over.
TEN
Today is your birthday. You are ten and you are squealing with excitement as I push the large wrapped box across the floor towards you. You manage to rip off the wrapping paper and look towards us to help you with the cardboard. It is a Henry Hoover. That is what you wanted.
You sit on the sofa and watch me vacuum around the house preparing for your party, your arms flailing, your legs beating up and down with excitement. We say your parties are the best because so many adults come to wish you a happy birthday. Family and friends from a
ll over arrive with their children who run loose in our house and garden with Natasha and Jack. You sit on the sofa with the adults, ignoring them. Today at the party Greg picks up his guitar and starts to sing. Dave, the ‘Clint Eastwood looking’ builder, saunters out to his car and returns with his own guitar to join in. They sing a catchy made-up tune about hoovers. You shriek with delight at the words they sing alternately to you.
‘Excuse me.’
‘Do you have a hoover?’
‘Where do you keep it?’
‘Under the stairs.’
They sing over and over and you begin to join in, we all do, as it builds in harmony, peaks to a crescendo. You collapse over in giggles, barely able to breathe, but whenever they try to end the song you cry out, ‘Again, again.’
*
You have been receiving an interesting collection of photographs recently. They have come through the post from family and friends posing with their hoovers. We have even received a photograph from our diving friend, Kate, of her hoovering up the seabed for her research. This is your latest obsession, your latest question whenever you meet anyone new. You hold out your hand and grab theirs and you don’t let go. Your speech is still difficult to grasp but it’s getting clearer.
‘Hello, I’m Louis.’
‘Hello, Louis, nice to meet you.’
‘Do you have a hoover?’
‘Sorry?’
‘He wants to know if you have a vacuum cleaner.’
‘Oh, right, yes I do.’
‘What make is it?’
‘It’s a Henry Hoover.’
Right answer. You double over with laughter.
And you’ve started to work out where most people keep them, I discover, as I’m wheeling you through the local DIY shop.
‘I need the toilet.’
‘Do you really, Louis?’
‘Toilet,’ you say, louder.
The uniformed shop assistant who just passed us has stopped and retraced his steps.
‘Excuse me, did I hear your son just say that he needs the toilet? There aren’t any in here but I could take you to the staff one if you’d like?’
You smile at the young man. I bend over your wheelchair whispering.
‘Louis, do you really?’
‘Yes!’ you scream clutching your crotch. ‘Do you have a hoover?’
‘Sorry?’
‘Do you have a hoover?’
‘He likes to know what make of vacuum cleaner you own,’ I say.
‘Ah yes, I do. It’s a Dyson.’ The young man is leading the way as I wheel you through double doors into the back section of the shop where it becomes more cramped.
‘It’s just a bit further on your left,’ he says. ‘I’ll wait here for you.’
As we reach the toilet door your arm shoots out. Your hand, like a claw, clamps to the doorframe, forcing me to stop.
‘Hoover.’
‘Louis.’
‘A hoover.’
You are looking transfixed at an upright vacuum cleaner stored in a corner right by the toilet door. You don’t need the toilet at all.
I am driving Jack and Natasha to school. We are leaving the village and winding down the long narrow road that burrows between raised hedgerows dividing ploughed fields; a stream on the right-hand side winds with us. I look in the car mirror and can see Natasha and Jack in their school uniforms. Between them sits Edie, Liz’s daughter, a pretty dark-haired girl from the village who is between their ages. Edie and Tashi are talking about names for horses and which is their favourite horse at the local stables.
‘I’m going to have to go away later today, only for a night. I’ll be back tomorrow,’ I say.
‘Why?’ Jack wails.
‘I need to go to Scotland.’
‘Why? I don’t want you to go.’
‘I have to go to Scotland for Louis. You know how Louis needs help with things? I have to go to a meeting about how he will be cared for.’
I hesitate. Natasha, Edie and Jack are quiet in the back. I look at them through the mirror.
‘And Tashi and Jack, I want you both to know that you don’t need to worry about Louis when you both grow up and leave home. Dad and I will make sure that Louis is cared for and looked after when we are dead and gone. You two can go anywhere you want in your lives when you are older.’
It sounds a little American but I mean every word. This is what I want. Of course Tasha and Jack will love you and will worry for you and care for you, but I don’t want them to be held back from having a life of their own. I don’t want them to feel the weight, to be responsible for your daily care needs.
‘Mummy, when you’re dead I’ll shoot myself,’ Jack’s voice rings out from the back.
I look in the mirror, startled.
Natasha looks over at Jack who has the biggest of grins stretched across his freckled face.
‘Why, Jack?’
I’m totally bewildered.
‘Then I can come and see you.’
Tasha rolls her eyes. ‘Ahhh, Jaack, you’re so stupid.’
Jack’s not listening to her. He’s grinning, looking into the mirror at my eyes; at this moment in time he means every word.
*
And how do Jack and Natasha understand and deal with your disability? I have always tried to explain your behaviour to them so they understand you can’t help it. You can’t help it when you double over with laughter when they fall and hurt themselves. They used to look shocked.
‘It’s not funny, Louis,’ they’d shout, indignantly.
But they understand now that you don’t mean it unkindly. You don’t seem to understand other people’s pain; you find their howling hilariously funny. Natasha and Jack now treat you like a younger little brother even though you’re the oldest. They are kind towards you and help you. But most of the time they get on with their playing as you show little interest in joining in.
One day Jack comes home from school angry. A boy called Robert had been mean about you; he teased Jack about having a disabled brother. I had tried to prepare for this, had explained to Jack and Natasha that this might happen to them and to tell me if it did. I went down to the school straight away and talked with the headmaster and asked him to tackle it in a positive manner somehow. I don’t know exactly how the headmaster handled it but he did it well because that is the only incident in Natasha and Jack’s playground lives when you are used as a tool of aggression against them. Interestingly, years later, they have never forgotten the incident or the mean boy’s name.
As you all grow older I’ll notice that Natasha and Jack choose friends who are inquisitive and interested in you and your habits, the kind of children who want to come up to you and say ‘hello’ and ask you questions. I don’t know if Natasha and Jack have chosen these friendships carefully but I’m pleased. Natasha’s best friend is called Megan and Jack’s is called Jamie. Jamie’s got a mischievous sense of humour and appreciates yours. One day in the future Jamie’s father Mike will tell me rather proudly what Jamie has said to him.
‘He said, “Dad, if I ever get rich, I’m going to buy Louis an escalator for Christmas, because that’s what he tells me he wants every year.”’
We call it the wall of fame. Blu-tacked onto the wall opposite your bed are photographs in cardboard frames of everyone kind enough to take you on Megafobia at Oakwood, the local theme park. Most of the photographs show the person screaming and you laughing or else looking rather serene. It makes me smile every time I see it. My favourite photograph is of my younger sister Jenny. Her dark hair is blown back, her red lipsticked mouth is open and her magnificent cleavage is fully displayed as you both plunge down the highest drop on the ride. And I wonder now, how did you discover that place? I can’t remember, but it’s become somewhere that you long to be taken to. If anyone visits it’s the first request you make, as my heart sinks.
Greg’s managed to wriggle out of going. He has suffered from epilepsy in the past so he can’t go on rides, which means tha
t I draw the short straw in coming too. I need to muster all of my energy to take you, as it is physically exhausting. The thought of the hills I will need to push you up through the park, the toileting and the difficulties in feeding you, the queues and your overriding excitement and determination to stay until the park closes. But we are fortunate: the management at the park have made a rule for the disabled. This rule will be taken away in the future but for now it still exists. You are able to go on any ride twice without getting off. This helps enormously with the physical effort of lifting you in and out of a carriage.
Today we are heading straight for Megafobia. I’ve done your toilet stop and we’ve taken the tiny train into the site. I have lifted the wheelchair out of the carriage, helped you to balance out of it too and into the wheelchair. Your cousins Daniel and Adam are charging off towards the Pirate’s Ship; Tasha and Jack are following them but Ollie is frightened and John’s trying to cajole him, while Sarah is holding Lucy’s hand as she pulls in the opposite direction towards the Umbrella ride. We agree that it is going to be impossible to stick together.
I push you along the tarmac path and hold on tightly to the handles of the wheelchair as we go down the steep hill and then stretch out my arms and back to push doubly hard back up the other side. I can hear the sound of Megafobia’s carriage wheels on the metal rungs fixed to the groaning wooden frame. I can hear the screams, the rattle as the carriages turn a bend, the sound of a rush of air as they drop from a great height down and up again. You are whooping with glee.
We are allowed to enter through the exit route. This route is ramped up to the exit platform at the end of the ride. I push you up the steep ramps as the ride is in action. This helps to get up to the top before the horde of thrill-seekers are rushing off the ride to run around the paths to join the queue again. We stand to the side behind a barrier off the platform and wait. The carriages arrive back with a sudden braking halt as the riders laugh and shake their heads.
