by Alison White
I’ve asked if it is possible for a nurse to entertain you for a short while so that I can actually speak with the surgeon and hear his answers.
I ask my questions all over again and he’s reassured me that this really is the best option for you. Mr Rhys has explained that there is a real risk that if we don’t do the operation your ankles may fuse. That the contractions and contortions that you suffer from may become permanently fixed affecting your flexibility, causing your walking to worsen, your legs to bow even further and force you into a wheelchair permanently.
‘The thinking is that by moving the tendons from one side to the other it will reduce the strength of the pull and lead him to be able to place his foot flat onto the floor. This should enable him to walk better. He may even in time be able to lose his walking frame. He will always be unsteady but he may be able to walk unaided or with poles.’
Is that really such a possibility for you?
I have decided.
‘Okay. I’d like us to proceed with the surgery.’
Mr Rhys has even suggested that we attempt both feet at the same time to limit the stress of the operation and time spent in hospital.
‘I’d rather do one foot at a time just in case things go wrong.’ As I say the word ‘wrong’ my body shivers. Please, please don’t let anything go wrong.
‘Splendid. We’ll do the left leg first as it’s the most badly affected. You’ll get a letter through the post with a date for the operation.’
TWELVE
Philip in the local Dr Barnardo’s shop calls you his most discerning customer. The shop is on a steep hill that makes it slightly hard to get into, but I try. I push you up the hill in the wheelchair, my arms outstretched and legs pushing hard, then I have to get you up and over the awkward step and into the shop.
Philip comes out from the private back section.
‘Hello, young man, how are we today and what can we get for you this time?’
You grin so hard you can’t speak for ages so Philip keeps talking.
‘Now let me see, sir. Is it steam trains you are looking for? You mentioned them to me before? Now I’m just popping into the back as I’m sure I put something aside for you there.’
He comes back. ‘How about this, sir, a book on steam trains?’
‘No,’ you say without looking.
‘Ah, that’s a shame.’
Philip wanders around the shop pulling out items and displaying them to you in your chair.
‘No, no, no,’ you say each time.
Eventually Philip stops, puts his hands on his hips. ‘Well, sir, that really is all that we have for today. I’m afraid we’ll have to continue to look out for things that you want. Is there anything you would like me to add in my special book?’
‘Yes,’ you say with an enormous grin.
‘I’m ready, sir, what shall I add?’
‘A dredger.’
‘A dredger?’
‘A dredger and a steamroller.’
‘Yes, sir.’
‘And an escalator and a double bass.’
‘They’re all written in. None of these items come in very often, sir, but you never can tell. I’m sorry there is nothing for you today, sir.’
‘Steam train.’
‘I’m sorry, sir? Did you say you want the steam train book today?’
‘Yes.’ You’re giggling.
You always want the very first thing, but you pretend, make Philip go through the whole shop first.
‘I must say, a very good choice, sir.’
You’ve been given a room this second time. Eight days ago you had your first operation. Then we were in the ward. You’d been in a bed and I’d lain on the floor with an inflatable mat. On day five after the operation Mr Rhys had opened your cast and looked down at your foot, pausing.
‘I want to operate on Louis again. The tendon is still pulling his foot over, I need to move more.’
You’d gone back in to surgery again two days later. And now it hurts. You cried through the night for the last two nights so they’ve moved us in here on our own. Now we are waiting to be told when you can go home.
You lie in the bed and I sit exhausted by your side in a chair. There’s a telly up high on the wall and CBeebies is playing. You watch the Tweenies on the screen lapsing in and out of concentration. The room is hot. I try to open the window to breathe some air from outside. The food trolley comes by. I’ve explained about your food allergies and inability to chew, so you get mash and beans and a yogurt. It’s placed on a tray on a table pulled over your lap. I help to spoon-feed it in. The pain relief has been increased and it seems to be working: you are only whimpering.
Your foot is raised up into the air in a plaster cast and I can see your small toes poking out at the end. The hospital physio comes in to see you. She is friendly and bright faced like they’ve all been so far.
‘Now it’s important to keep Louis’s foot raised if you can for the next six weeks. Then when the cast is taken off you will be able to begin to exercise him. Get him back up onto his feet.’
We are sent home three days later. It’s a relief stepping out of the hospital into fresh air, wheeling you down to the car, lifting you into your seat.
We make a contraption to keep your foot raised. The hospital wasn’t allowed to provide anything to take home with us and the local hospital physiotherapist has told us that she can’t provide anything either.
We are hopeful.
*
Six weeks later we return to Swansea. You scream in fear at the sound of the plaster cutter. We need to cajole you, distract you and eventually hold you still while your cast is sliced down the side and removed. Your white shrivelled leg appears and we are told we can go home now, that you should get back to normal shortly.
‘Are there any physio instructions you can give us?’
‘No, just do what you usually do. He should make a full recovery.’
I’m a little surprised. I try to get hold of the paediatric physiotherapist at our local hospital to discuss what we should do but it is the week before Christmas. She’s away. She will not be available until mid-January.
*
You develop a urinary infection that Christmas. We need to lift you to do anything. You are afraid and unable to bear your weight. You are barely sleeping and neither am I.
I call the hospital but there is no one available. I curse that it’s Christmas, New Year. Eventually I get through and demand to see Mr Rhys at his next clinic in January. He’s not very forthcoming.
‘It will come in time for Louis, you just need to be patient.’
‘But I understand that it’s important to do exercise early for a better recovery. Surely you must have some exercises that could be suggested?’
‘No. This is not our remit here. That should happen in your own local area.’
*
Toileting has become a problem. You are permanently in the wheelchair and unable to get yourself onto the toilet. I have to partially lift you while encouraging you to stand on your good leg. Thank goodness they didn’t do both at the same time or we’d really be stuck. What was the surgeon thinking when he suggested that? My back is killing me from all the lifting and I’m finding it incredibly difficult to clean you properly.
Today Faith, the children’s occupational therapist from the local council, has come to visit us at home. I requested a referral over two months ago and I have been asking on the telephone ever since for someone to visit.
Faith stands in our hall looking stylish in an embroidered blue linen dress, her blond ringlets resting lightly on her shoulders, her face serenely blank. It is the first time we have met. I’m exhausted. You had me up six times last night. My sense of relief that at last someone has come is evaporating. Her face is immobile. She doesn’t seem to understand what I’ve just said to her, that your risk of infection is even greater due to your hypospadias, that it’s important that you are kept clean.
‘He’ll soon recover. It�
��s not necessary to get you any sanitary cleaning equipment. Anyway, you’d have to apply for a grant because of the expense of a Clos-o-Mat toilet so I would not be prepared to recommend it. By the time it comes through he won’t need one.’
‘What do you mean? How am I supposed to clean Louis?’
‘He can learn to do more himself.’
‘I’m sorry? Before this operation Louis couldn’t wipe himself and that was when he could partially balance.’
‘You need to allow him to try.’
She’s statuesque in her gaze. It’s unsettling. I’m starting to seethe.
‘Let me show you.’
We move from the hall into the bathroom. I wheel you through too. I keep you fully clothed but lift and manoeuvre you on and off the toilet seat, get you to stand precariously on one leg to demonstrate how I’m trying to wipe you. You are as helpful as you can be, but it’s back-breakingly hard work. You sit back down on top of the toilet seat with your arms and legs flaying unpredictably around as your throat releases spontaneous cries.
‘Do you see? It’s not possible to clean Louis properly.’
‘It requires you to stop doing it.’
She’s gone too far, the heat is rising in my face. Faith’s face is as smooth as a white stone gleaming on a pebbled beach. Her body is still and she keeps her gaze calmly fixed on my contorting face. I don’t see a flicker of emotion in her eyes. I straighten up from my bent stance and I try to keep my voice calm but I can hear it is shaking. Her insinuation that the fault is mine has thrown me; in my anger I’m furiously trying to hold back tears that are threatening to erupt.
‘So tell me, how do you expect him to wipe himself? He can’t stand. He has cerebral palsy in his hands. It’s not going to go away.’
Greg’s heard my raised voice and has appeared behind Faith by the bathroom door, looking puzzled.
‘Oh, he can do it if you train him. He needs to be made.’
‘You’re not making sense. We’ve been trying for years. He can’t do it.’
She turns away.
‘What about now? We need help.’
‘I may order an additional bar for holding onto. I’ll see what I think when I get back to the office.’
Greg’s as incredulous as I am. He’s turned pink. As she moves past him he growls, ‘I’ll write to the newspapers.’
She ignores him.
‘We will complain about this,’ I say as she goes out of the door.
Until now I’ve never wished our experience on anyone. I never thought that I ever would, but at this precise moment I wish it on her. I wish her the whole whammy, all of this, for it to swallow her, swallow her up whole.
*
I write a letter of complaint to her department but I’m met with silence. Eventually I get an answer to my phone calls. I am told Faith is on extended leave. ‘She’s in New Zealand,’ the secretary wistfully says, ‘and there’s no one to replace her to deal with her workload right now.’
Much later, in the distant future, I’ll regret my exhaustion that prevented me from pursuing my complaint further. Who else has she demoralised at their most vulnerable? But right now I’m desperately tired. I have to concentrate my energy; I need to find a solution to our problem urgently.
And I do.
What we need, it transpires, is a Bio Bidet. I can’t believe it when I find such a brilliant thing exists: a self-cleaning unit built into a toilet seat that costs a sixth of the price of the Clos-o-Mat toilet and it does exactly the same job. The salesman tells me these Bio Bidets are all the rage in Japan and the Middle East but that here in the West we prefer paper.
It looks like any other toilet seat but is thicker and has a hidden retractable nozzle and a remote control unit to operate it. A nozzle extends and squirts or sprinkles water for as long as you wish, then it can blow you dry afterwards too.
You suffer a urinary tract infection while waiting for this equipment I’ve ordered and I try one more call to the occupational therapy department. I am told you have been removed from their list. If we want a new assessment to be made we will have to go through the process of gaining a referral from the hospital paediatrician again. I know the doctor is on sick leave. Anyway, it is clear – what is the point?
I give up.
I sit down at our kitchen table and stare out of the big glass window and see the trees lining the end of our garden bending from strong gusts of wind. I look at them bending and righting and realise that unlike them at this moment my trunk has split. We were just about coping before but this disastrous operation has sent us over the edge.
You are waking seven times in the night screaming for me. What can I do? If I ignore you it might be a time that you need your inhaler. I can’t risk it. When I come downstairs and ask you, ‘What is it, Louis, what do you want? It’s the middle of the night,’ you say you can hear humming in the walls.
I’m begging the doctors for help but I just get blank faces. They have separated you out with your learning disabilities from a child who suffers mental issues. They just can’t deal with you.
You cry in pain. You ache in your joints, in your hip and your legs, and it’s all because you are immobile. And Mr Rhys is unavailable. I’m told he can’t see us again until April or maybe June. I’m making repeated requests for urgent physiotherapy but I’m told that this needs to be instructed by the surgeon. I ask Mr Rhys’s secretary to please ask him to write requesting help for us but he doesn’t. Eventually the local physiotherapist Jan Williams gets back from an extended holiday and examines Louis. She makes her opinion clear.
‘Louis does not have a problem physically. He should be able to walk again with his walker.’
‘But he can’t,’ I explain. ‘He’s in pain and he can’t stand up straight.’
*
Jan provides your school with large leg splints that are attached to both of your upper legs for support. She’s instructed your school support assistant and other members of staff on the importance of you exercising down the corridor. She suggests to them that it is insisted upon; that when you come to leave the building each afternoon to get onto your school bus you must walk. She instructs the staff to ignore you if you fall down or complain. That it is all attention-seeking behaviour that needs to be discouraged. She hasn’t told me about these instructions; she clearly thinks I’m part of the cause.
*
I get a phone call from a neighbour.
‘I don’t know if I should be telling you this or not but I felt worried just now when I walked past Louis’s school. Louis was outside, on the ground crying. He’d clearly fallen from his walker but the staff were ignoring him, talking over him as he tried to pull himself up.’
I’m blazing. My anger bursts through my exhaustion when I call up the school.
‘I demand a meeting and an explanation. Louis is to remain in his wheelchair at all times in school until this has been sorted out.’
*
I am sitting in a chair in an airless meeting room at your school. A round table is taking up most of the space; the chairs are filled with efficient faces, some are smiling tightly but their eyes are empty. They are nodding to each other, shaking their heads, writing things down. I am being offered pills: melatonin, Vallergan. I am being told your problems are psychologically induced.
‘There really is no reason why he should not be walking in his frame again by now.’
‘He needs to be forced, ignored if he falls to the ground.’
‘This often happens when they reach this age, losing the ability to walk. You need will and perseverance; often it’s the parents who haven’t got it.’
‘There is no reason why he cannot weight-bear; you don’t need any additional toileting and bathing equipment.’
‘You really must sedate him, his anxieties need to be managed.’
The tears are silently running down my cheeks.
‘Look! Look at mother.’
Heads swivel and stare.
‘She
needs an assessment.’
They are all nodding.
Greg goes to the next meeting.
‘You’ll have a one parent family on your hands if you don’t do anything. Two hours of help a month is pathetic. We’re at breaking point. I’m going to leave, then you’ll have to do something. You’re going to have a child in care before you know it.’
*
He hasn’t told me what he has said. He tells me later with an angry laugh when I tell him what had happened today. A social worker has arrived at our house to see me.
‘I just want to make an assessment of how you are managing.’
I repeat to her how our sleep is broken constantly through the night; tell her about your pains, our despair at trying to cope.
‘Do you get suicidal?’
Oh my god, this is humiliating. What business is that of hers? Do I have to say yes to get help?
‘I’m not in a position to be able to offer you any respite, that’s another department. But I will be suggesting to the children’s services that you do need more than two hours a month. They should be sending someone out to assess Louis again shortly but I’m here to assess you.’
Tears are streaming down my face again. It keeps happening; I think it’s the exhaustion.
‘There is a possibility I can find funds for you to attend couple counselling if you feel that would help?’
‘Sorry? The problems are with caring for Louis not between ourselves.’
She looks at me strangely. I consider her suggestion.
‘Maybe we could do with some individual counselling to discuss how we are coping?’
And how do we share this agony? My heart howls silently, Greg’s bursts out like fire.
And we argue, we argue about the noise, the distress, what the hell this is doing to us all.
