Letter to Louis Read online

  FOUR

  Today you start at Special School but you won’t let me leave. I stay here for the two hours in the morning twice a week.

  Your school is tucked behind a street of red sandstone tenements near the River Kelvin, surrounded by low stone walls with rusting metal railings. There is a high solid metal gate that opens wide to let the school buses in each morning. The large drive allows the specially adapted buses to draw up close to the main building’s entrance. The back doors are opened and ramps clatter down to the floor. Escorts help push the children in their wheelchairs or buggies out to the smiling school staff who appear, wearing comfortable clothing. Friendly words of greeting ring out as the adults swap their care roles. The buses restart their engines and turn out of the drive and then it all goes eerily silent.

  Around the edge of the redbrick building is mown grass with a number of blossoming cherry trees and a semi-complete raised garden area. As funds are raised, volunteers from the Duke of Edinburgh’s Award scheme and the Army come in to offer their help to make the garden more pleasant for you children to use.

  The building is one storey, old and dilapidated. There is a corridor that runs down its length with large airy Victorian classrooms positioned off it. At the far end of the building is a particularly large room. This is for nursery-aged children. This is where I’ve brought you today. In time you will move up the corridor as you increase in age to enter different classrooms according to your disability. In between these two distinct areas is an office for the head teacher and a room for a doctor and a nurse. The extent of the disabilities the children have here requires daily medical supervision.

  You arrive on your first day with your legs wrapped tight around my waist and my hands clasped together under your nappied bottom. You cling like a monkey and won’t let me put you down, so eventually I sit down on the floor too.

  In time the staff will provide you with a special chair and a standing frame with a tray. Both are on wheels and you are strapped in to play certain games, press buttons of animal sounds or put boxes on top of each other while trying to help your posture. You don’t interact with the other children but you like to watch, humming on your dummy, squealing now and then.

  One little girl befriends me. Each time I arrive she will sit by my side, stretch her legs out straight in front of her, wiggle her light blue shoes. She likes to smile up at me and offer me toys, show me her doll. Her name is Maisie. None of the staff discuss why each of the children is here at the school. With some it is obvious but with others it’s not and I find that I wonder why they can’t be at an ordinary nursery. Maisie is very able. She looks a little different: her head is slightly larger and her eyes are bulbous, but that isn’t a reason to be here. In time I gather through observation of her deterioration and catching odd bits of conversation that Maisie’s condition is degenerative. She is here as a lively four year old able to speak, hear, walk and play, but within two years she will die, as one by one the things she can do disappear. The pain on Maisie’s parents’ faces is especially hard to witness. Every parent who comes here is in his or her own stage of distress. It makes it almost impossible to form any kind of friendship because no one wants to share or compare.

  *

  You sit in the nursery and cry and squirm and suck your dummy but as the weeks pass you begin to settle. Gradually you begin to bottom shuffle away short distances from me to watch what is going on elsewhere. You’ve been given a special assistant, Jean, to help you play and join in. Little by little I manage to move away, then sit on a chair by the wall, then sneak out of the door, until four months later you can be left. You still scream but it’s manageable for them now.

  *

  I feel an enormous sense of relief the first day that I manage to leave you all morning in school. I walk out of the building knowing you will be fine. You will be toileted and fed and entertained for a few hours. I walk through the silent grounds, under the cherry trees and out onto the tarmac road. I wander right down to the River Kelvin and stand still on the bank, watch the brown-grey water flowing rapidly under the bridge.

  I want to have another baby.

  I know it seems crazy but I loved growing up with brothers and sisters. I feel lucky to have four siblings. Natasha has you for her brother, but she has no other sibling to talk with or play with, and no one to share her concerns with in the future about you and me.

  I hope it can also bring further normality into our lives. Over time, Natasha has lessened the intensity of my pain. Her brightness has brought other children and adults into our lives and they’ve come to care about you too. Now I can listen to other mothers complaining about their children without wanting to cry, without my inner mind screaming that I’d give anything to be in their shoes. To have a ‘normal’ child has helped me, but what about her? And what about the new child I want to bring into this world? What if things go wrong again? If only it were possible to know that everything in any further pregnancy will go okay. When I became pregnant with Natasha we still had so much hope for your progress. I know there are no guarantees when having a child, but I don’t think we could cope if something went wrong again.

  Greg is worried. None of the doctors we have spoken to can explain why you are the way that you are, why you have not caught up after all, why you are not going to that normal school. Everyone has gone silent.

  Greg doesn’t want to risk it.

  ‘I don’t want to have another baby if there is any chance that there is some underlying genetic cause. The doctors don’t seem to know why Louis is the way he is; what if it’s something to do with us, our combination of genes?’

  I speak with the paediatrician at your school, Dr Buchanan.

  ‘Why is Louis the way he is? We want to try for another baby but we are worried in case this could happen again.’

  ‘I don’t know why.’

  Audrey has died. She was your great-grandmother and a child prodigy on the piano in her day. I’m looking at a collection of newspaper cuttings after her funeral. They show announcements of concerts, photographs of her performing on stage, she was playing to royalty by the age of five, but she gave it all up when she married your great-grandfather Alan. It was front-page news in The Times, but no one remembers her now. It was Audrey’s mother who made her play and I remember her telling me her mother had insured her hands. Audrey felt she’d missed out on a childhood so she had lots of children of her own to experience it again through their eyes. Now she has gone. I will no longer receive her spidery handwritten letters of encouragement that have been dropping through my letterbox about you. When I think of Audrey I see her face beaming from her bed, her wizened finger pointing to small oval gilt frames on her wall – a radiating circle of offspring, six children and twenty-four grandchildren and the circle was continuing; the great-grandchildren were coming and you were up there on her wall with your shock of blond hair.

  The annual Christmas family gathering is taking place at Len and Catherine’s house. I’ve missed the last few since you’ve been born. We have travelled from Glasgow to Yorkshire and I am standing in the living room talking to my Aunt Janet. She is asking me questions about what happened at your delivery.

  Janet looks across the living room floor at you sitting on the carpet. Your body is slumped forwards and your head is hanging down. Len is bent down beside you. I know he’s checking you out for the first time. He’ll come and speak to me later, tell me what he thinks as a paediatrician, though he’ll soften his thoughts. Janet turns back to face me; her face is kindly but I can see concern there.

  Dr Buchanan has referred us to a specialist genetic centre at Yorkhill hospital. We get an appointment in the New Year. Dr Gosse inspects you on the couch and watches you standing and trying to walk holding my hands.

  ‘He’s very thin and wasted. There are a few minor details that I’ve noted; nothing that appears to indicate anything obvious but you never know. If there is an obscure syndrome that I have not considered we may find out from
this list of observations. I’ll send away my findings and check the obvious ones too. In the meantime we’ll take some blood and do further detailed chromosome checks. I’ll be in touch when I get the results.’

  ‘What are these congenital defects you mention?’

  ‘Well, you say you were told by a doctor that Louis has thirteen pairs of ribs. This is very common. People all over the world are walking around with thirteen pairs rather than twelve and are totally unaware of it. But it is just one of the things that is different about Louis. And then there are the small teeth and his wide mouth. I note that Louis still has all his milk teeth and also he has a pigeon chest.’

  ‘I’ve been told that is due to the pressure of the ventilator on Louis’s soft bones when he was born. It wasn’t there at first; it came during his time in hospital.’

  ‘Yes, yes, you are most likely correct there, but it is worth mentioning all of these things just in case it brings up anything.’

  We have thrown caution to the wind. The genetic tests are not back but I have got pregnant.

  I’m terrified of anything going wrong again. I’ve been offered more detailed checks through this pregnancy and I can barely contain my fear at times. I arrive panic stricken at the hospital. The nurses know me, are kind and understanding. They check my blood pressure, they monitor the baby’s heartbeat, and they give me a scan – I will be given so many scans this time – and then they reassure me and send me home.

  Dr Gosse has called us back in to see her and she has another doctor with her, a paediatric neurologist called Dr Jalloh. I sit there pregnant while you bottom shuffle around her room. Dr Gosse tells us that there is nothing to suggest you have an underlying genetic condition; your chromosomes are completely normal. She’s done detailed tests and everything has drawn a blank.

  ‘This means there may be a one in four chance of it happening again.’

  She must have seen my horrified face because she quickly added, ‘This is what I tell any person when we cannot find any cause.’

  It seems an alarming statistic to me.

  ‘I’ve invited Dr Jalloh to come into this meeting as he might be able to help us in identifying the cause or causes of Louis’s disabilities.’

  *

  Dr Jalloh invites us back to his clinic the following month.

  ‘Can I take a detailed history from you about what you know about your pregnancy and Louis’s delivery and his time spent in hospital?’

  We discuss the bits that I know: the pre-eclampsia and placental abruption seen at delivery; that you were very light for your gestation and that Dr Thompson had told me you’d suffered no bleeds to your brain that he could see on the ultrasound scans.

  ‘The only thing I can suggest that might help us further in finding out why Louis is the way he is would be to conduct an MRI scan. This will tell us if Louis’s brain is normally formed, is of a normal size. It will also be able to indicate if any parts of the brain have been damaged.’

  ‘When will this happen?’

  ‘Ah, it is likely to take up to a year, there’s a long waiting list and your son’s scan isn’t urgent, but hopefully it will give you some answers.’

  And Greg and I nod at the doctor in the consultation room.

  I still have unspoken hopes deep down inside that somehow, if we only try hard enough, you will miraculously metamorphose and recover.

  It’s been nearly two years since Dr Nook wrote his referral letter to Bobath. At last a thick A4 envelope drops through the letterbox with a long list of questions about your current abilities. At the end of the forms it asks me what we would like Bobath to focus on when they see you. I write down we’d like advice on exercises that may help you to ultimately walk. I post the forms back and two weeks later we are offered a six-week block of therapy to start in two months’ time. My younger cousin, Sarah, comes up to live with us for a year, which is perfect timing. She will care for Natasha while I take you to the Bobath Centre for your sessions.

  On paper Bobath appears to offer hope to any desperate parent with a child suffering from cerebral palsy. They offer intensive blocks of personalised therapy in the three main disciplines: physio, occupational, and speech and language therapy. I was so excited about taking you there; I couldn’t wait to get some of their expert feedback.

  But Bobath doesn’t help you to improve. We attend two hours daily for six weeks. I was eager and willing to listen to any suggestions. You were bounced on a ball supported at the waist by one therapist while another lifted items into the air for you to stretch out for and another crouched down low, held your feet firmly as you scrunched up your toes and contorted your feet. They spoke in hushed serious tones to each other about your cerebral palsy in all four limbs, your lack of balance and your twisting feet. They noted your shrieking and felt you had sensory overload, observed the way that you continually bite your arm and wondered if you had a low arousal level and were doing this action to help stimulate yourself. Yes, yes, and how can you help us?

  At the end of the six-week block they suggest some minor tasks to perform daily such as rubbing your feet with a bobbled cloth for you to experience texture and arousal. They explain that you need to gain an understanding of your place in space.

  ‘And exercises: are there any regular exercises we can do?’

  ‘It’s the positioning that counts. There has to be correct positioning. We suggest that you hold Louis’s feet flat to the floor while you distract him in play. When his foot curls you are to prevent it, hold it tight in the correct position.’

  *

  The feasibility of these suggestions is limited and the results from their initial six-week block non-existent. You are sent home with a typed report containing a series of correct positioning postures for your feet. Your helpers at school try their hardest to accommodate this for you. A learning assistant holds your feet in position for a period of time each day as you stand in your standing frame or sit in your special seat. It makes no difference.

  *

  Over time I’ve come to realise that their suggested treatments were well meaning but pointless. The ‘correct positioning’ theory ignores that cerebral palsy is a permanent disorder affecting muscle tone, reflexes and co-ordination. So some tendons are shorter than others, some muscles tighter or wasted. This causes pulling, contortion and deformity of limbs. Spasms and involuntary movements occur that cannot be controlled by will alone and no physical manipulation can alter positioning alone either. As you have grown, this fact has become more apparent. The pull in your shortened tendons has twisted your feet further. I discover in time that this happens. That cerebral palsy worsens during growth spurts. That children with cerebral palsy can deteriorate and in their early teenage years, if not already, end up permanently in a wheelchair. I come to believe by your determination alone that exercise is the key. Forget perfect positioning.

  *

  During your second block of treatment at Bobath the three therapists agreed with each other that they didn’t think there was any point in you coming for further treatment. They said there was no more that they could offer you. I was astounded, even though I still had so much to learn. How could that possibly be? You have so many verbal and physical needs; you can’t talk, walk or even crawl.

  *

  But Bobath did help you in another way. One of the therapists noticed, as you babbled incoherently, that your noise was rhythmic, in time to the background music playing in the room.

  ‘There’s a charity called Nordoff Robbins. They offer music therapy to children with disabilities. Maybe Louis could benefit from them?’

  The birch tree outside your window shimmers and a small group of starlings chatter on the branches. The sun shines through the leaves and into the bedroom casting patterns across the stained beige carpet, over our bodies. You sit legs bent backwards, resting on your nappied bottom. A pile of videos and their boxes are scattered all around you and you are shrieking, biting your arm, sitting back then leaning forwards pre
ssing your face down onto the carpet, howling. I’m on my knees facing you.

  ‘Louis, what is it, what do you want?’

  Through the small opening in the large sash window fresh spring air touches my face, brushes it gently, crosses over my furrowed brows, reminds me of life continuing outside. Your scream becomes louder. I stretch out my arms, fists clenched.

  ‘Is it the television? Do you want the television on? Yes or no?’

  I shake my left fist for yes and my right for no. You lean forwards and, with a strength that you have mustered from deep within, hit my fists away.

  A melodic Irish voice is trickling down the phone line; I can feel the vibrations of his voice in my ear that is warming with the softness of his lilt.

  ‘Look, I’m telling you, I know I said I was full and had a long waiting list but I have to see him again. His response to music was incredible. We communicated together through sounds. I sense he’s locked in and scared and I know I can help. I want to offer to see him in my lunch hour.’

  *

  The radio is playing Nat King Cole. His seductive voice is drifting around the kitchen, ‘Quizás, Quizás, Quizás …’ Natasha is in the highchair, plastic spoon in her hand, food smeared all over her face, and you are on the kitchen floor bottom shuffling around, squealing and babbling. I’m sure you’re trying to sing along to the tune; your sounds have a rhythm to them. My belly is swollen again, not long to go. I’m leaning on a broomstick for support, feeling anxious, panicking about the future and feeling overwhelmed at all of your needs. I turn to Greg who is tapping along to the music on the kitchen table.