Letter to Louis Page 7

  *

  This appointment is important. The doctors are monitoring your weight loss carefully. It will determine when you will have to have the gastrostomy operation. You won’t drink any more. Not at all. As soon as you could take solids you refused. Now we have to get all your fluid into you through your food. It has to be pureed and runny; you don’t seem to be able to chew. Later I will find out that this is part of your cerebral palsy condition but right now I don’t know this. I’ve been cooking, pureeing, blending, fresh meat and vegetables and fruit, but you prefer to eat custard. You keep your mouth closed, clam it shut as I try to persuade you to open your mouth. I place plastic spoons under your nose heaped with freshly pureed fruit and veg but you wriggle from side to side in your high chair and refuse to eat it. Last week I gave up on my homemade cooking and I brought every single flavour of tined baby food from the Co-op desperate to get something into you. You wouldn’t eat any of the flavours except the very last tin, the tin of egg custard. You opened your mouth so wide and gulped it down, it was all gone in an instant and you gestured for more. Now that you’ve tasted egg custard it is all that you want to eat; feeding you nutritious food has become a challenge every day.

  And there’s also your eczema to contend with. We will try anything that might help improve it. I tried homeopathy first. I have friends who swear by its miraculous results and I wanted to believe: I need miracles to happen. I put you through six months of visits and pills and your eczema got steadily worse while the homeopath told me that it had to before it could get better. When he told me your eczema was an angry trauma resulting from Greg not being present at your birth, I snapped. What a thing to choose given all the things that have happened. Oh fuck off, will you?

  *

  The Chinese doctor has been better. We went to see him four weeks ago, having heard that Chinese medicine can be successful with eczema. We went to a tiny shop down on Dumbarton Road. There in the window were rows of glass jars containing dried roots, bark and other indecipherable things. They were displayed on shelves behind the counter too. I held you in my arms as the fatherly Chinese man looked at your eyes, your eyelids, your tongue, your skin. As he took your pulse he seemed concerned, his jovial face became serious.

  ‘I think we should forget about the eczema right now. It is more important that he gets fluid into him.’

  He looked down at me.

  ‘You are pregnant?’ His voice sounded surprised. ‘This is not good, you should only have one baby. This baby needs your undivided attention.’

  This Chinese man was voicing my fears out loud. What have I done bringing another child into this world with you? How will I be able to cope, give it happiness too?

  ‘But wait,’ the man added. ‘When is your baby due?’

  ‘Late August.’

  ‘Ah, okay, yes, this is good after all. Your child Louis is born in the year of the rat. Your new baby will be born in the year of the tiger. The tiger carries the rat on its back. This is good, it all makes sense, this will be what he needs.’

  We were sent away with a mixture of roots and leaves to boil in water for four hours. We were told to do this every day for the next four weeks and then to come back and see him again.

  ‘Louis doesn’t drink,’ I tried to tell him but he didn’t seem to hear.

  I boiled the concoction until it reduced to a black syrupy liquid to the quantity of a test tube and I dribbled it into your mouth.

  And it made the house stink.

  *

  Your name is called eventually. The nurse directs us into Dr Lyme’s room. The dark-haired doctor stands as we enter. She has a serious, humourless face.

  ‘Hello. Please sit down. How have things been since last time?’

  Last time I was desperate. Last time I listed my struggles with the ointments, the dayand night-time bandaging, the vomiting, your refusal to drink. She studies the nurse’s notes.

  ‘This is remarkable. Louis has gained a significant amount of weight over a very short period of time.’

  Her serious face is smiling.

  I tell her that, yes, I have been following the foods she has instructed me to feed you. Turkey, vegetables and grains made into a puree. You continue to vomit most of it up. And then I add, ‘There’s another thing. I’ve taken Louis to see a Chinese doctor. He’s given me herbs. They need boiling for four hours each day and they turn into a syrup and amazingly Louis drinks it up each time.’

  She’s on her feet, leaving the room. Her voice is furious.

  ‘You can only back one horse.’

  *

  Dr Nook is more understanding.

  ‘This is rather remarkable and I think as it’s working you should continue for a while. I may even be able to postpone the operation if Louis’s weight gain continues to improve. We’ll do some tests on his kidneys. We need to check that no damage is occurring from this. It has been known for Chinese medicine to be filled with potent steroids.’

  *

  All your kidney tests come back fine and we continue to give you this medicine until your weight climbs back up onto the graph and the doctors’ worries subside.

  I should feel joy when Natasha is born and I do for a split moment but I’m soon filled with fear and dread of how I am going to cope.

  It becomes obvious later that Greg and I will have to do things separately so that Natasha gets some time, some attention; the chance to be treated normally.

  Right now as a baby she doesn’t seem to notice our struggles. She has a happy personality, rarely crying. She is content to burble and play and watch as I care for you. She sits in her baby bouncer in a snug pink jumpsuit and wriggles her toes in her fleecy booties, she kicks her feet up and down and gurgles. Her blue eyes crease into half-moons as she watches you.

  TWO

  We take you to the Montessori nursery across the road from our flat.

  ‘Would it be possible for Louis to come to the nursery and watch the other children play, just for a couple of hours a week?’ While I care for your baby sister. For us to have an hour or two’s break.

  The nursery teacher agrees. ‘Well, I’m willing to give it a try,’ she says. ‘I’m sure we could try an hour or two once or twice a week for you.’

  They don’t manage two hours.

  ‘I’m sorry, we didn’t realise the extent of his needs, his noise. We can’t cope with him.’

  We can only joke, ‘Hey Louis, you’ve been expelled!’ What else can we do? We are seriously worried. Who is there out there who can help us? What are we going to do?

  The doorbell rings. It is Zoe, the physiotherapist from the hospital. You are sitting on my hip, your legs wrapped around me. I’ve picked you up from the floor. I’ve shoved your baby walker into the cupboard; she doesn’t approve and I don’t agree with her. You could either thrash on the floor unable to move or you could be in a walker moving around the flat.

  ‘It will prevent him from gaining the will to walk.’

  I went and checked with the orthopaedic surgeon at the hospital, who was straight with me: ‘I’ve seen many children through the years when these walkers have been in or out of fashion. It has no bearing on the child’s ultimate ability to walk.’

  That was enough information for me but Zoe still doesn’t agree.

  You cling to me as she walks in with her confident gait.

  ‘Ah now, let’s have Louis.’

  And I wish I could have known more at this time in our lives. If I had I would have shown her the door. She takes you from my arms and lies you on the Afghan rug on our living room floor, on your stomach and waves a toy above your head.

  ‘Where’s teddy, Louis?’

  You are wriggling and starting to cry; now you start to scream.

  ‘I think you are asking him to do something impossible.’

  ‘No, it is important for him developmentally to learn to crawl.’

  ‘But he can’t even roll over yet.’

  She perseveres and when I think about
this now she might as well have been asking you to do a one-finger press-up.

  When she left that day she forgot her file. I heard her footsteps descend the stone spiral staircase, the sound of the heavy storm door bang and shake. I’d scooped you up in my arms, your dummy in your mouth to comfort you, when I noticed her file on the sofa. I don’t usually look at other people’s things but she’s bugged me today the way she was with you. I open the folder. Her first entry is noted for that early clinic visit when you were only four months old, and two months if we take the doctor’s corrected age. The one when she rolled you around on your chest while you cried.

  She had written: ‘Seen at outpatients clinic … mother has a tendency to over-baby infant.’

  Some days your blond hair stands straight up around your gaunt oval face, your eyes wide spaced and blue. I manage to capture your alien look as you lie flat in the bath. You still do not have the strength to sit unsupported so I run the water not too deep. I lie you carefully down in the water so your head and body are covered, your face only partially so. The water frames your cheeks, your lips, your eyes. And your hair still stands on end. I crouch up onto the plastic bath’s edge, place my feet on either side and point my camera straight down. And it catches you just how you are.

  And the photograph will travel with us through the years as you grow and change. It leans against a wall in a frame and people who come into our lives are drawn to it, exclaim, ‘I love this photograph. Wow, it’s Louis? He looks like an alien.’

  And here I am carrying you in my arms up to the clinic again. You are nearly three. I have not seen Dr Thompson since those early months after we left the hospital and here he is; we have met in the corridor again.

  ‘Ah, Alison and wee Louis. How are you doing?’

  He has a wide grin and a twinkle in his eye. I think he likes me as much as I like and respect him. I’m greeting him back, trying to smile, but I’m shattered. You are thrashing around in my arms, screaming as usual.

  ‘That wee boy wants to be put down: he wants to run around,’ Dr Thompson says amicably.

  ‘Yes, but he can’t. He can’t stand, he can’t even sit unaided.’

  I see the shadow cross his face. The awkward end to our conversation as we both walk sadly away. We no longer need to wait and see. You have developmental delay in all areas.

  *

  In the clinic I ask, ‘But what does this mean in the future? How will Louis be?’

  ‘We still don’t know: you will have to wait and see.’

  ‘But you must know something, surely?’

  ‘I’m sorry but it’s very difficult to tell. You are being referred to the community paediatrician; the follow-up clinic at the hospital ends shortly. Dr MacAuley will start to put in place a number of professionals to come and see Louis to help him.’

  I am in a cave in complete darkness. I am enveloped in black, a black that does not touch but hovers around, surrounds.

  The despair and grief engulf us as we try to care for you, the constant pain and distress you are in. And your sister has come and I fear for her also. What have I brought her into?

  ‘We should split up. You look after Natasha, then at least you can both have a life,’ I say.

  ‘That’s not going to help, is it. We can barely cope with both of us caring for Louis.’

  ‘But what is going to happen?’

  Greg is silent

  I am silent.

  I picture the cliff. I picture jumping holding you tight in my arms, falling and falling through the air.

  ‘Dr Nook – I’ve been researching various charities that can help children with cerebral palsy while they are young to try and reach their full potential. I’ve discovered one called BIBIC in Somerset that creates a personalised exercise programme for each child. It requires a referral. Have you heard of them?’

  ‘Yes, I have, but there is a charity called Bobath with a centre based here in Glasgow. This is where our physiotherapists recommend a child like Louis to attend. I’m prepared to write a referral but it may take a while to secure funding and there’s a very long waiting list.’

  You are not improving. We have a list of doctors and specialists who inspect you and suggest things. Nobody is saying we have to wait any more, nobody is saying anything. Dr MacAuley has mentioned the words ‘special school’. Your care is so intensive I can barely function.

  THREE

  My destiny has been decided. The realisation hits me full force in the stomach. I don’t want this destiny. I don’t want to be the mother of a disabled child. I don’t want to be a carer forever; I don’t want to lose my freedom. But I haven’t a choice. My fate has been decided for me and it’s a devastating feeling to know that this is it. No more wondering whether to do this or that.

  Shall we emigrate? My uncle from New Zealand is visiting.

  ‘That would never be possible for you now. They don’t allow disabled children or adults into New Zealand. I’m sure it’s the case in most countries, not unless you have the means to provide and care for yourself.’

  And it’s a good job you weren’t born in America. Would you have survived? All the intensive care you required – we’d be bankrupt or you’d be dead.

  And all my dreams, my possible careers; they’ve all melted away. I can’t seem to do anything. I can barely get through the day; I am so fatigued with all your care needs. Will this ever let up? What I feel in my heart is so deep that at times it makes me gasp. I cannot accept this is happening but I’ve realised I have to. I’ve got to forget our early hopes and dreams; stop expecting you ever to catch up.

  *

  And it helps.

  *

  Now I think of the worst possible scenario and start from there. I imagine we will be stuck in this status quo forever, get no further than here. That you will never stop vomiting, never stop screaming, never sit unaided, never move around, never talk, never feed yourself, never dress yourself, never walk, never sleep through a night without waking at least five times and never communicate with me in any meaningful way. I expect nothing more than what we have. This will go on for ever and ever.

  But you are making improvements, slowly, so slowly. And each little step that you make surprises my heart. It will happen unexpectedly, when I’ve long since given up that possibility for good: you will suddenly manage it.

  Look, Louis! You are sitting unaided today.

  And today another beam of light has pierced into my cave.

  I rush into the living room to see why you’re squealing. I’d only left you seconds before, propped up with pillows positioned around you keeping you safe and upright. I’d left you to go and fetch a toy from your bedroom to place on the wooden floor in front of you. As I dash back into the room I see that the pillows have fallen away and a space remains where you’d sat. You are shuffling across the floor.

  You can move.

  You are squealing in delight. Your legs are in front of you bent up at the knees and your arms are pushing down on the floor behind you and you’re finally moving forwards. You stop and look up towards me. There is glee in your eyes and your mouth is wide open in an enormous smile.

  ‘Wow, Louis, look at you,’ I say in astonishment. And you squeal, turn and start moving again.

  The effect of your bottom shuffling is miraculous. Something has happened inside your body because your vomiting subsides. Is it your stomach muscles? Do they strengthen from the movements you can now make? Instead of being sick you make long violent burps but the food stays down mostly and you begin to get stronger.

  I’ve learnt something in life because of you: I’ve learnt what matters. It’s very simple and it is something worth striving for every day. The fleeting feeling of happiness for whatever small reason makes life feel bearable. If you are unhappy it is impossible to be happy, so that is the key. Whatever keeps you content and stimulated, whatever enables you to communicate your needs, keeps you happy, and that makes me happy.

  It’s your pain and fru
stration that make life unbearable. The possible reasons are multiple and there are lots of things about you that I still don’t know. What is the cause of your crying today? Are you hungry? Does your stomach hurt? Is your eczema itching? Are you struggling to breathe? Are you allergic? Which foods? Which animals? Are you feeling trapped, frustrated because you can’t walk, get around, reach something? Do I not understand? You can’t tell me, you can’t speak, you can’t say what you need. Later I’ll discover you are desperately trying to let me know your obsessions, your terrors, later I’ll discover acid burns in your stomach and causes you to vomit. Later I’ll discover you have acute hearing, you are blessed with perfect pitch, certain sounds all around are overwhelmingly loud and they’re piercing your ears as you cry.

  *

  But now in this moment of freedom you are happy, you bottom shuffle around the flat exploring in crannies. And in time you will get a rhythm to your movements, pushing your palms and your heels hard into the floor and bumping your bottom along the boards, you get quicker and quicker. You’ll wear holes into most of your trouser bottoms even though I buy ones that are padded. When I pull them out of the clothes basket to hang them up to dry I will smile at the holes that need patching; you must lean to your left, as it is always the left buttock of your trousers that gets completely worn through.