by Alison White
The speech and language therapist is sitting upright in her chair facing us. She is talking in a high-pitched but soft voice. She has a well-meaning look on her face and her voice has a professional tone we are becoming accustomed to hearing.
‘Your son has very limited understanding. It is understandable for parents to find this difficult to accept but we need to develop alternative ways of communicating for Louis. I’m afraid he is never going to be able to speak in the conventional sense.’
‘But he’s making babbling sounds, I’m sure they could become words. I feel he’s frustrated at not being understood. It seems to be driving him crazy.’
‘I suggest we continue with the PECS system, keep using simple pictures for Louis to communicate with us, basic nouns such as cup, shoe, teddy, which I stress he must be made to point at before you respond.’
‘But I’m certain he understands more than this, more than we realise – we are waiting for him to have an MRI scan to tell us more about his brain function, but look, look at his schoolbook that I use with him, it’s filled with detailed descriptions. He uses it to try to explain to me what he wants to do. And take poetry for example; Louis loves us to read him poetry at bedtime. He enjoys “The King’s Breakfast”, “Green Eggs and Ham”. This picture system you use,’ I hesitate, trying to find the right words, ‘it’s so limited, I think it frustrates Louis more than helps him.’
She looks at me in a pitying way. ‘This is the way forward for him.’
*
A month later a letter with your hospital appointment arrives for your MRI scan. It’s for mid-September just before you’ll turn six. The scan will take fifty separate images of sections of your brain. I’m torn when the day eventually comes, Jack and Natasha are poorly with colds and I’m feeling under the weather so it’s Greg who takes you. You have to be sedated I’m told later, you would never have kept still in that big booming machine.
SIX
I am carrying you down a green corridor of the type we’ve experienced in hospital, but this isn’t a hospital. Your legs are wrapped around my waist and you’re squealing, your excitement is bouncing off the walls and echoing down the length of the corridor all the way to Brian’s door. As we approach the door flings wide open and Brian steps out. He fills the doorframe but it’s his personality that envelops us. He is mid-thirties with a youthful face, gelled hair, a smart pressed shirt, pointed shoes and has a smile that is infectious. He greets us in his gentle brogue.
‘Hello, Louis, come on in.’
You are doubled over in my arms giggling uncontrollably, shaking so hard you are unable to lift your head. I have never seen you happy like this. I wait for your excitement to subside, at least enough to be able to place you carefully down on a bucket-shaped plastic chair positioned beside an enormous drum. Brian sits himself down behind a large piano.
Brian begins to sing his opening song, a song that welcomes you while his fingers lightly flow across the keys producing a tune filled with crescendos. You have just managed to control your giggling and are sitting back in the seat with a wide smile that hunches up your shoulders and creases your face to reveal your tiny teeth. There are two drumsticks resting on the drum’s skin and you lean forwards to pick one up. With one hand you try to hit the drum and Brian sings out to you as he plays to try two hands. You don’t usually have the strength to do this. The drumsticks are heavy for you, your arms too weak, but you try and you manage to hold them both. You hold the drumsticks in both hands and hit the drum, not hard, just a light brush, and as you do Brian’s voice sings louder. You lean back in the seat with your arms raised and your mouth open and emit a joyous cry. You try again and Brian’s voice becomes louder still. I suddenly realise this is the only place you have ever had any control over the things around you. Brian begins to sing his song again.
‘Hello, Louis, how are you today? Hello, Louis, how are you today?’
He continues to sing but when he comes to the word ‘today’ he removes it, pauses in the music, and then carries on. The room is filled with the sound of the piano and Brian’s resonant voice and then a silence, and that is when I hear a whisper. Brian continues, pauses, and from the silence a word is formed from your mouth, floats out into the room, sweet, high and lilting.
‘Tooo daay,’ you sing.
There is a distant buzz of a lawnmower outside the frosted window. This Victorian brick building is surrounded by broken tarmac, concrete and tower blocks but there is one strip of grass that runs along the outside of the building. The hum is getting louder. I see you are distracted by the sound; it seems to have sent you into a trance. You have become stationary, your arms have dropped to your side and it is as if you have disappeared from the room. What has that sound reminded you of? Brian is playing and singing. He glances over and notices your sudden change in mood and although he continues to play he shifts the melody slightly, slows his pace and sings out a question.
‘Are you happy or sad today, Louis?’
I have never asked you a question like that. You do not move, you make no sign to register you have heard except your body seems to expel air, sink down in the seat. You open your mouth and sing back a word. It whispers slowly from your mouth.
‘Sad.’
I am in the kitchen and you are howling in your bedroom. I rush into your room to see what is upsetting you this time. Have you vomited again as you often do? You are sitting on the floor with music tapes scattered out of their boxes and the tape recorder in front of you. You are clutching your hands to your head and wailing. Your face is pink and tears are streaming down your cheeks. I’m down on the floor beside you.
‘Louis, what is it? Calm down. You can tell me now, what’s wrong?’
You’re trying to speak, gasping for air.
‘It’s okay, breathe slowly, three deep breaths, that’s it, that’s better, much better.’
You press your hands hard against your head, look at the floor and speak hesitantly.
‘Window. Birds ears hurt.’
I walk into the flat and place you down onto the floor. Greg pokes his head out of his music cupboard at the far end of the hall and then ducks his head back in. He doesn’t speak and he doesn’t offer to help. What was that look on his face? I shut the front door to keep you safe from the spiralling stairs – you’d shuffle out. I rush back down to get Jack from the double pushchair. I’ve had to leave him alone outside. Tasha is climbing the curving stairs slowly, little ‘doggy’ in one hand, the other holding onto the wrought iron struts of the banister. I’m back up to our flat and have left Jack sitting in the cot to keep him safe from you. I pass Tasha again as I head down for the shopping bags and the double pushchair. I need to store it behind the shared door. We are not going to be able to live here much longer. But everyone lives in tenement flats here so what on earth are we going to do?
I’ve just come from the local shops. We’ve seen Maureen in the Co-op – ‘clappy clappy handies,’ she always sings to you. Then we went into the ‘banging shop’ – we can’t pass it without a visit. The first time we’d passed, you had pointed through the glass, made noises, wriggled your body. It was clear you had wanted to go in.
‘Can I help you, my friend?’ the shopkeeper had asked.
At the meat counter you’d doubled over in giggles, howling with delight while the man banged away chopping the sheep carcass into sections. He whacked his mallet against the enormous wooden block while you wept with laughter. We always buy our lamb from here now. I climb the stairs one last time with the bags.
Greg told me much later that he didn’t know how he was going to tell me the news.
*
That evening when all the children are eventually asleep I come into the living room, sit down on the sofa. Greg speaks; he must have been waiting.
‘There was a phone call earlier today.’
‘Oh yes, who was it?’
I’m completely unaware what is coming.
‘Dr Jalloh – he called ab
out the scan. He said he’d studied the MRI imaging and wanted to explain.’
I sit up from my slumped position on the sofa. I’d have liked to have taken this call.
‘What did he say?’
Greg looks away, his voice cracks.
‘He’s found damage.’
*
A letter will drop through our box a few days later explaining in clinical terms Dr Jalloh’s findings. It will tell us that your brain is of a normal size with all parts present. It will tell us that this really rules out any possible genetic factor. In addition, it will tell us there is no evidence of bleeding, nor any evidence of chronic damage to the outer peripheral areas of the brain like the type that one may find in a child who has been born prematurely.
But then the letter will continue.
‘Although Louis’s brain is intact there is some detectable damage to Louis’s brain in the high metabolising area. He’s suffered a sudden period of reduced oxygen and blood supply. This has caused permanent damage to the Basal Ganglia region of his brain. When precisely, from the details I have here, I am unable to say.’
Your brain was perfectly formed, perfectly.
Brian is on the telephone.
‘Alison, I hope you don’t mind my asking but we think you would be perfect. There’s a charity dinner and auction coming up for Nordoff Robbins. It’s a big event, a great craic, and it helps to keep the charity afloat for the next year. Would you consider speaking at it for us? We like to ask a parent to share their experience of what the charity has meant to them and their child? You don’t have to say much – just five minutes is enough.’
I hold my breath; I have a fear of public speaking. It is the bane of my life. I can’t get up and talk in front of big groups of people. It’s become a phobia. I blame it on the fainting incident when I passed out in the aisle as a bridesmaid at Catherine and Len’s wedding years ago. Now I always think I’m going to faint when I stand up in front of others.
‘I’d love to but I can’t. I can’t do public speaking, but maybe Greg will.’
‘Sure,’ Greg answers, ‘I can do that.’
*
‘Have you prepared your speech yet?’ I ask Greg as the day nears.
‘No, I don’t need to. I’ll just do it on the day; it’s no problem. I’ll just describe what Brian has done for Louis.’
‘Don’t you need to prepare something, though?’
‘No, I’ll be fine.’
I’d be useless and a nervous wreck. I love this about Greg, his confidence, his ability to perform, his ability to get up on stage and play his own music live.
*
We are sitting around a large table in a very grand room in the Glasgow Hilton. There is a stage, and a sparkling black backdrop surrounding us. Lights twinkle as if it were real stars in a sky. Greg leans towards me.
‘Jeez, this is like the Oscars. I hadn’t realised it was going to be quite so big.’
It’s a black tie event and star studded. We’ve met Edwyn Collins in the lift coming down from our room. Wet Wet Wet have just performed, Deacon Blue are playing and Donovan is on later. I’ve not been out to a big social event in a very long time. My parents are up visiting to help. They’ve offered to look after all of you children overnight. We’ve been given a hotel room and it feels surreal being taken from the intense monotony of caring for you into the glamour of this night.
‘Have you written anything down yet?’
Greg is looking a little bit worried.
‘Bloody hell, I think I’d better try. I’m off up to our room.’
Greg borrows a pen off Brian and takes a napkin off the table and is gone.
This is an important night for the charity, a lot is at stake. I can sense the tension in the man beside me, the founder of the charity.
‘You’ve managed to draw in many stars.’
He nods gently.
‘How’s Louis today?’
*
A short five-minute film has been made of you and Brian. A cameraman came and filmed one of your therapy sessions last month. They gave you a copy. You play it over and over at home, singing along to Brian. I think you like to see yourself on the telly, you like being a star. You still play it years later. It was shown on the television for Children in Need soon after this event and you like to share your moment of fame.
*
The compère is back on the stage and a white screen has dropped in front of the star spangled drapes.
‘I think this is it,’ I whisper.
The compère nods in our direction and Greg stands up. I squeeze his arm.
‘Good luck.’
He walks up onto the stage.
I don’t know how he can do this.
‘And now we have come to the main part of the evening. What this is all about, folks. Please put your hands together and welcome Greg White, father to Louis – one of the children this charity has been helping. Greg is going to tell us all a little of what Nordoff Robbins has meant to him and his family.’
Applause rings out. Greg clears his throat.
‘Good evening, everyone. I’ll start by telling you a little about my son. Louis was born prematurely at thirty-two weeks, it was a traumatic delivery.’
Greg has paused. Oh shit, he’s sounding wobbly.
‘Unfortunately Louis was brain damaged.’
Greg is sobbing.
The compère whispers into his ear. The room has gone silent. I’m pinching my arm to stop myself from crying too. Oh my god, Greg, you don’t have to do it. Faces turn towards our table from around the room. The compère speaks.
‘We are just going to play a brief film of Louis having his music therapy with Brian, one of our therapists.’
Greg has stepped back from the microphones and I can see the compère talking to him as the film begins to play.
The film is a tearjerker itself. Here you come. You are thin and frail and unable to balance, Greg is holding your hands. He is helping you to step-walk down that echoey corridor towards Brian’s room. You are giggling with excitement – edit – there is Brian on his piano singing, welcoming you in – edit – there you are sitting on that plastic seat trying to hit the drum, turning the stick the wrong way up, putting it into your mouth – edit – Brian is drumming the piano with all of his fingers. A most beautiful high-pitched tune – edit – a look of amazement appears on your thin gaunt face as your and Brian’s eyes meet.
Greg’s returned to the microphones. He manages to talk. He tells us how you couldn’t talk before we found Nordoff Robbins. How it has been a miracle for you and for us as parents to see our son unlocked by the power of music therapy.
The room erupts.
Greg walks back towards the table.
‘I’m so sorry,’ he says to the man beside me. In the background I can hear the compère beginning the auction.
‘You’ve heard what we can do, the difference we can make to these children’s lives. Now let’s see what we can raise to help these children more.’
People are staring. Brian leans forwards to Greg. ‘Don’t apologise, Greg. There wasn’t a dry eye in the house. I predict a very successful night for us.’
‘No, I blew it,’ he whispers to me. ‘I didn’t realise. I’ve never spoken out loud about this before.’
In bed the next morning Greg is suffering: he’s hung-over. I’d helped him stagger into the lift, collapse unconscious on the bed.
‘What happened out at that bar then?’
‘I had to get out of that room. When I got through the door there was a bar straight in front. A man in a kilt came through the door too. He drawled in an American accent that he wanted to buy me a drink. He told me my speech had moved him deeply. I asked him what he did. “Oh, I just write a few songs,” he said.
‘“Come on,” I insisted, “you can tell me, what songs? I’m interested.” I could see behind him a queue was forming, then I realised that queue was waiting to speak to me! “Oh just a few songs.” “Like wha
t?” I persisted. “Give me an example.” “Oh you know, like that song, ‘What’s Love Got To Do With It?’.”’
They’re everything really, aren’t they? All those things that we take for granted like being able to walk, play, write, get dressed, wipe our bums, brush our teeth, tie our shoelaces, chew our food, blow our nose, lick our lips. You still can’t do any of these things. We help you to do everything and little by little, at a pace that is imperceptible, we make progress with some things. Others will never come. The damage is done.
I have to be brave for you and face the world out there. Face other parents and children. It’s okay, you can speak to us and we will welcome it. There is nothing to fear. I try to be open and clear. I don’t want Tasha and Jack to be unable to be invited to places too. I assure them it’s fine; one of us can go and one can stay behind to care for you. Of course I understand that if you came it wouldn’t work, because you just scream and cry and thrash and bite and I would be holding your hands, step-walking you around and around like a toddler although you are six now, or holding you, legs wrapped around me, as you repetitively pass me the folded-up five pound note that you want me to open so you can fold it up tightly again. If you came it would be a disaster.
I watch a documentary on Nelson Mandela. He’s reading a newspaper on an aeroplane. He’s folding the paper closed, lining up the sheets of paper meticulously, making the edges meet exactly, folding with extreme precision and care. The camera is stationary, watching. It takes him a very long time. Is this a coping strategy from his twenty-seven years of confinement? Has this meticulous precision arisen from a need for some control? I see similarities in his behaviour with yours and your folded five pound note. Is it your years in and out of hospital, the pain you have suffered, being unable to speak, to move, to let your needs be known? Is this why you have obsessions and compulsions? Are they your coping mechanism with life?