I met Tracy when she was at her physical peak; she had stomach muscles so strong that she had a ravine running down her torso, an astonishing dancer with amazing flexibility and balance. Since we have been together I’ve witnessed her utterly ravaged by the birth of George but to see her as she is now is even more shocking. She’s been completely battered in internally and externally and I’m very, very worried about her now. Though she is much better at sleeping than I am, she has still barely managed three hours in a row in nearly a week. The sleep she does have is filled with nightmares of even more horror than we’ve experienced these past days. We are to do alternate nights from here on in, no arguments. And she is eventually okay with this. I think she is desperate for a sleep, however much she wants to be by the side of her boy. So when Tracy leaves that night I walk to the door with George and we wave her off. And so she goes. And I am suddenly gripped by fear.
I am alone with George in a place I don’t know. Full of people I don’t know. And it feels very, very strange. Tracy managed this. Surely I can do it? Why on earth am I feeling so frightened? This is definitely not something I share with Tracy. What on earth is wrong with me? I’ve been alone with George for countless nights and never felt like this. There aren’t that many parents that stay overnight. I would say possible one in six or seven kids have a parent with them. And there is not a single man. The other women do look slightly freaked out by the sight of me strolling down the ward with my toothbrush. I am useless at sleeping anywhere public. Correction. I have never, every fallen asleep in a public place. I can’t bring myself to relax enough to do it. And this couldn’t be much more public. The fact that we are not allowed to draw the curtains fully disturbs me even more. So I wait a while before getting the bed pulled out from the wall. It feels so odd to be alone with George. I am always present when he goes to sleep. And yet an ‘overnighter’ feels odd. The last two nights have been the only time I have been apart from George and now we are apart from his Mother. But he looks very happy with the whole arrangement, smiling away. I gaze into those eyes of his. And he is looking right through me again. Looking to see what I’m made of. And the truth is that I am just suffering from my own, slightly neurotic tic. I am out of my comfort zone.
I’ve always been a crap traveler (something I wish was not the case) and have always taken time to settle, even when we went on European holidays. I hate to admit this, it makes me appear incredibly dull and lifeless. A little bit of a suburban bore in a fleece, one who can’t be pulled away from his Sky Sports and Digestive biscuits. I promise you I’m not, I don’t even own a fleece and or have Sky Sports! I’m usually fine after a few days of being away but I do have a mild inner panic whenever I’m in a new environment. It all feels very pathetic to admit. I’d love to paint myself as an intrepid traveler, happy with just his flip flops and back pack and a funky hat, but take my shower away from me and I can have a bit of a wobble. If my son were old enough to talk would I share such a petty weakness with him? After all my grand speeches about ‘never being afraid’. No. Of course I wouldn’t, because I’m being an idiot. A particularly irrational, idiot. He’s so happy right now. He thinks we’re in for an all night rough and tumble play session. And he might very well be right! And I can feel a massive surge of love from him that makes me feel giddy. I feel so close to him in this moment. It feels like we’re camping out for the night together. ‘The boys’. I’m so proud of him. And here I am learning from him, yet again. I am starting to worry about just how much guidance I’m receiving from a six month old. I love him so terribly much and it rushes all over me. What it is to hold him. What it is to look into the eyes of his. What it is to receive that smile. I walk George up and down the ward in the hope of tiring him out a bit. At the end of the corridor is a massive window. And through it is the perfect view of Big Ben and the Houses of Parliament. And we are clinging onto one another, giggling like a pair of little boys.
I don’t sleep much that night but I do manage an hour or two. I feed him every few hours with the formula milk. I love doing this. And have to admit I loved the first time Tracy let me give him a formula feed in preparation for her return to work. I love to have him lie in my lap and gaze up at me as he guzzles away. He will often pull away from the bottle to give a massive, milk soaked grin. And it’s a chance to feel so close to him. I cherish it. My tics have vanished by now and I know I’d much rather be here than at home, alone in bed and far away from him. I feel like he’s looking after me as much as I’m looking after him in these wee small hours. I’m so uncomfortable sleeping in a place like this. In such close proximity to strangers, with unfamiliar sounds and strange bright lights. But he is smiling away at me. ‘What’s the problem?’ he’s saying. ‘This is great fun’. So I just relax. I don’t worry about the not sleeping or the uncomfortable Mum’s or the weird bed and the printers and the faxes and the phones and that lunatic lady in the next bay. I just have fun. I even sing quietly to him. Another rendition of Billy Joel’s ‘This Night’. And now there is no question as to whether or not my boy is comforted by my presence. He thinks this is fantastic. Alone in a darkened hospital ward, hurtling along corridors, rolling amongst the toys and singing songs. Just me and my son. It’s wonderful.
We meet Megan that morning. Megan is our diabetes dietician, and like Barbara, she will prove integral to every part of George’s care. George is deeply in love with her on sight. She is very pretty, tall, South African and fair haired. Very much George’s type and he gazes at her immediately, even managing to illicit a blush from her. Megan is very, very positive about every aspect of George’s condition. She immediately asks us what we think George may not be able to eat. We make some murmurings about sugar and fizzy drinks being not very good and then she interrupts us. ‘There is nothing that he cannot eat or drink’. She says this with a very certain smile. That’s very good to hear. ‘It’s all about learning about the right amount of insulin to give him for each food.’ I ask Megan about exercise and its effects. She tells us that it will have an effect on hid blood sugar levels, but, again, punctuates it with ‘there is nothing that George cannot do’. And there is that certainty again. She appears to be such a happy person, her presence is hugely positive, in every way and it’s very difficult not to be uplifted by her energy. Megan stays with us for an hour as we go through every solid food that George eats, she will return with their exact carbohydrate content. It’s important that we learn these very quickly. But Megan is a breath of fresh air, we like her very much from the first moment we meet.
The terrifying small amount that I knew about diabetes is starting to hit home. I had no idea how life threatening it would be. Type 1 diabetes develops if the body cannot produce any insulin. Insulin is a hormone which helps the glucose to enter the cells where it is used as fuel by the body. Type 1 diabetes usually appears before the age of 40. It is the least common of the two main types and accounts for around 10 per cent of all people with diabetes. Type 2 diabetes develops when the body can still make some insulin, but not enough, or when the insulin that is produced does not work properly (known as insulin resistance). In most cases this is linked with being overweight. Type 2 diabetes is the more common of the two main types and accounts for around 90 per cent of people with diabetes. I do wish that people would make more of a distinction between Type 1 and Type 2 diabetes. Type 1 is not, in any case ever recorded, a self inflicted disease. This is from the diabetes UK website
“The risk factors are different for Type 1 and Type 2 diabetes. Type 1 diabetes develops when the insulin-producing cells in the pancreas have been destroyed. No one knows for certain why these cells have been damaged, but the most likely cause is the body having an abnormal reaction to the cells. This may be triggered by a viral or other infection.
Type 2 diabetes usually appears in middle-aged or older people, although more frequently it is being diagnosed in younger overweight people, and it is known to affect Black and South
Asian people at a younger age. Type 2 diabetes occurs when the body is not making enough
Insulin or the insulin it is making is not being used properly. The risk of developing Type 2
Diabetes can be reduced by changes in lifestyle.”
So what George has is not a result of lifestyle and has absolutely nothing to do with being overweight. There are huge numbers of people who suffer from diabetes Type 2 who don’t even require medication for what they have. And many can just take oral medication to treat it. None of this will be an option for our son. There is nothing he could have done, nothing that anyone could have done to prevent what has happened to him and he will require twenty four hour care for the rest of his life. It is more than a little galling when people try and group both conditions as one and consider them to be the same thing. We are to learn this more and more, and more and more painfully over the coming months. The facts make for horrific reading. We learn how much more likely our boy is to go blind, lose limbs through amputation, suffering everything from depression to erectile dysfunction all because of this shitty disease. I won’t take any of this lying down and neither will he. We will do everything we can to prevent these things and we will make sure he does everything he can in life. The stat that tells me that Type 1 sufferers live on average twenty years less than people without the disease breaks my heart. One in five people around the world will die from diabetes. Most suffer serious sight problems within twenty years of diagnosis. But none of this will break us. I’m not having it. I won’t let my wife linger on this either. He will see no sign of self pity from his parents and we will not pity him. We will stand up for our boy.
Right now the people standing with us are the many nurses on the Mountain Ward. George likes a nurse, this much he has made very, very clear. They are all female on Mountain Ward, bar one. And I think he likes that even more. There are also an incredible number of them, all alternating between night and day shifts and moving bays and patients as they go. We begin with Lucy, who looks incredibly young. She’s sensitive and funny and a little silly with George. Which is absolutely perfect for him. She’s very, very easy to talk to and a wonderful listener too. She relishes the time she gets to spend with George. Most of the time he is happy and alert and crawling all over the place. And it must be nice to deal with a baby who is not so visibly sick and suffering. Lucy is still doing part of her training and she is with us for our first three days. It’s another three days after that when I see her again, in her ‘civvies’ on a training day. She sees George and her face lights up as she shouts ‘George’ and runs over and gives him a kiss. I didn’t expect Doctors and Nurses to behave like this. I assumed being emotionally open and sensitive would mean exhaustion within a week of practicing but Lucy is evidence against this.
We have an Australian woman called Annette, who looks after us for our first four or five nights. She is wonderfully assured and incredibly competent. It’s so clear how good she is at her job and she takes great care to understand exactly what is happening with George’s numbers. They have to check his ‘Obs’ every couple of hours. And they have to do this through the night. It can be very difficult to take a baby’s temperature and blood pressure and do it all without waking him. Annette does it every time. She’s brilliant at communicating with us all of her knowledge of diabetes. She’s a terrific professional and we feel really assured by her. What I like most about Annette is her willingness for a dialogue about George’s treatment; she empowers us in a very clever and subtle manner. A very, very impressive person.
And then there’s Brooke, who is also very, very young. She tells us of her niece around the same age as George and it’s clear how much she loves this little girl. She does everything she can to win a grin from George and is very open in humiliating herself for such a prize. She is a keen learner, very keen to learn every aspect of George’s condition. She’s great fun and, again, very, very easy to talk to. Her shift ends at 8 pm but I don’t see her for a couple of hours as she is dealing with a sick patient opposite us in the bay. It’s about 9 pm when I am playing in the toy area of the ward with George and Brooke comes running over to us in her coat, ready for home. ‘I’m so sorry. I’ve been looking for you. I didn’t get to say goodbye before I left.’ She then wants to check that I have everything I need for George for the night and tells me that she has all of his number from his logbook and tells me when her next shift is as she wants to check up on him. I’m completely gob smacked by her. At her age I was drinking to the point of diving in empty street fountains and nearly killing myself. With dyed blonde hair and boy band reject clothes. And I thought I was doing terribly well! And she is this extraordinary professional, an hour beyond her last shift and still working above and beyond her role. She’s so impressive as a person. I want to know where she is in fifteen years. In charge. I hope is the answer. She’s so well evolved. I almost want to meet her parents and get some tips. It really takes my breath to see young people achieving so much and doing it all with such humility and poise. And I know that plenty of people might be sniffy about being a ‘nurse’. And they’d probably dismiss it as being ‘not very well paid’ or make some lazy ‘shite journalism inspired’ remarks about the state of the NHS and the futility of trying. But I am utterly in awe of these people. They are making me ask some very hard questions of what on earth I have been doing on this earth all these years. I resolve, once again, to make sure that I thank these people. Somehow, when this is all over, I must find the appropriate way to say thank you.
We are starting to go a little stir crazy from being in the hospital. I never stopped taking George out from him being just a week or so old. He loves to be outside. To be nosy. To watch people, trees, cars, buses and, of course, his favourite, trucks! And so it seems that there are now gaps in the day when George does not have to have his blood tested, all of two hours as it turns out. And we are in charge of all of his injections now. And we have all of his formula milk. And he isn’t wired to anything anymore. And I have been daring enough to take him down a floor or two. I haven’t asked anyone but the trips along the corridor have been too many. There are only so many times I can take him to gaze at Big Ben. And so I ask a nurse if we can take him out for a bit. And she looks a little terrified and says we might have to ask the consultant. It’s key that we don’t miss the consultant on their morning or afternoon rounds. And we missed him this morning. So the following morning I tell Tracy to ready herself. We are taking him out. I am sure that they will let us. So we prepare a bag, full of medication and needles and formula. And clothes. And…I’m not sure where we are going to do but I want him to feel the air on his face.
When Tony comes round to our bed in the morning I have a pre-prepared speech about how good I think it would be for us to get out. For George to get out. None of it involves escaping the noise. Or the sheet lighting. Or the sight of the walls. Tracy calms my expectation and reminds me that we must do as we are told. Dr.Hulse wants us to consider an insulin pump. This is a device, which looks a lot like a mobile phone and is permanently attached to George through a small needle. The device receives George’s blood test via blue tooth. You then type in the number of carbs he is about to eat and the device then works out how much insulin he will require. The beauty of this device is that it can administer tiny amounts of insulin, as little as a twentieth of what he is currently receiving. And this will go a long way to making his levels steadier. But the device looks scary. And I hate the idea of something permanently attached to our son. It’s not a decision for now.
When Dr.Hulse approaches and I draw breath for my long speech. He suggests we do what we want for the day. I ask if we can take him out. ‘Of course, have a day out. As long as you like’ And I feel such joy. And Tracy is beaming. We are told to make sure we have him back for the evening but I think we are taking him out for a few hours. He leaves. Tracy hugs me and we tell George that he is going out. He smiles. I have no idea if he understands but I think he’s clever enough to see real and genuine joy on Mummy and Daddy’s face for the first time in a while. I run outside and tell my waiting parents. We are going out!
The buildup feels enormous as we weave through the hospital corridors. George is giggling the whole way down. Delighted by the sight of lots of people, and in particular, lots of female nurses very willing to smile at this cute chubby cheeked boy. My heart starts to race as we get near the door. I can see my wife almost skipping on her toes. I can see her almost daring to smile too. It feels like Christmas morning as a child. The anticipation. The giddiness. And I have a picture of us leaving. I remember my legs trembling as we approached the doors of the hospital. And the picture is of George in my arms. Shrieking with delight as we reach the daylight air. I am holding him aloft as if to celebrate all that he has done. I feel like we are going to have our son. We are going to get him home. And we will raise him and be a family. All that we’ve ever wanted but thought had gone. And there is so much laughter from us all. And it feels like the first step to recovery for everyone.
And so, out of a nightmare, we have dared to dream a little. Small targets are made but each morning we wake with the knowledge that George won’t be going home. So we have to try and make the day different for him. We can take him to different play areas on the ward. I walk him up and down the corridors incessantly. But we do hope that we will be allowed out again. The nurses respond very well to the fact that we have long been keeping a diary for what we do when we take a blood test. In one margin we have the time. In the next we have his blood sugar level. The next which type of insulin we injected and another to say which leg and where we did it, and, finally, how many carbs he has consumed and what he ate. We know exactly how much a small bottle of formula contains. In fact we know exactly how much is in as little as 50ml. We are testing him anywhere between twenty and forty times a day. But we make sure we are meticulous in everything. And we make sure that it is now always us doing the injecting and the testing and the caring. We can’t afford to be panicked when we are eventually allowed to leave.
Tracy starts to fall into a bit of depression when we know we have to go back to the ward after our little day out but I remind her that we’ve taken a massive step. A step even greater when two days later we are given the all clear to take him home for a day. It just so happens that all of George’s cousins are to be at my parent’s house. I’m desperate for us to be there, even more desperate to surprise them all. My parents have come to the hospital every day since George has been in bar one. They’ve bought food, supplies, moral support in abundance. They have often waiting hours in a waiting room, just to offer us a small time away together when George slept during the day. Or just to be there to talk to. I know how phenomenal they are at rallying around, I know that there is nothing they wouldn’t do for us but I still managed to be shocked by their devotion. George looks an awful lot like I did as a baby. His hair even defies gravity, standing straight up to the sky, just as mine did. George behaves terrifyingly similarly to me. My Mum has been caught calling him ‘Simon’ more than once. She tells me how odd it is to feel as if she is visiting her past, suddenly sent back thirty four years by a look or a laugh from her grandson. I don’t know if this has made it harder for her. She loves all of her grandchildren with everything she has so I don’t think George receives any favouritism but this has shaken her terribly. I keep thinking about that look on her face in A&E. And so I want to pay them back a little with the surprise arrival of George. Despite the fact that all the other grandkids were to be at their house, either my Mum or Dad had resolved to come to hospital today. I hope that I can ring them if given the all clear and dissuade them from visiting this particular day.
I was once again prepared with a big speech for Dr.Hulse. Tracy was cautious. What if we got stuck on a train? I told her we would take bags of milk and bags of needles. And bags of insulin. But we were getting out. A very nervous nurse wants hourly phone calls with numbers and injection updates. We make emphatic promises. We imagined already being home for a while and taking George to see his cousins again. I am never happier then when we are all together. It is something I dreamed of as a kid. It’s very weird dream to imagine your brothers and sister with children when you are about nine years old but I did dream about it. There is so much warmth in the room when they are all under the same room. Laughing, playing, drumming, shouting, screaming, crawling, running and generally being lunatics. I had been sat on the sofa with my nephew, Alex (a day younger than George) snuggled into my chest. And my son sat on my lap. My brothers and my sister and my sisters in law and my Mum and Dad. And my nieces, Minnie and Sophie, were cuddled under a blanket on the floor, watching Mary Poppins. And it felt safe and warm. And the room felt full of love and happiness. It was a feeling I remembered as a child. If I were to ask to name a time at which I am at my most content then I would picture this very scene.
My mother had hoped we might be able to join them but she gave up hope a few days ago. Dr.Hulse approaches our bed, I clear my throat for the big speech and just as I begin to tell him of the gathering he interrupts and tells us we must go. Just be home in time for bed. And we are so excited. Next comes the call to my Dad and I’m pretty certain that he doesn’t suspect a thing. And it’s all such a thrill. Taking him on the train. Walking home. We can’t stay there. It haunts me on the nights when I am home alone and Tracy is at hospital. And now when we are there briefly it does not feel right. And it is too much to even think of him sleeping in his own cot again. So we scoop up some George supplies and drive to my Mum’s. And we creep up to the front door. And ring on the bell. And they are all there. Crowded in the hallway. My brother Tom opens the door and lets out a sort of yell. My Mum comes running to the door.
She says. And they erupt in a cheer. And George bursts into tears at the shock of it all.
Tracy and I hang back as George is chaired through to the living room. Tracy and I are alone in the hallway for a moment. And crying. And holding onto one another. And crying again. But this time there is such a release. The poison of stress and pain is starting to drain from our bodies. Nearly there now. Nearly there.
And we get to watch George with his cousins. They crawl around the floor and George is one of them again. Another, normal child. All scenes I dreamed of and ones I thought would never happen. I notice that it’s hard for my sisters in law to see George. They haven’t been to the hospital as they’ve been at home looking after the kids while my brothers have come. And my Mum tells me that Helena is terrified of Alex having Diabetes type 1. He is as unlikely to have it as any other child. But I understand why she is thinking that way. They have been given their own nightmares in all of this. It’s not just our worlds that have been shaken. They have been constant with their messages of support to Tracy and me. I do manage to talk a little to Ilia about it all. She has had her own traumas with two premature babies and knows too much about Intensive Care. She’s very, very easy to talk to, always listening, caring and understanding. I’m so happy to be in their company and even happier to see them gathered around Tracy. I see the pain on their faces when George is injected in the living room by me. They gasp when he doesn’t make a sound. But I know it’s horrifying for them to witness. Only they really know the fear, agony and heartache that Tracy has been through these past two weeks. Because they are Mum’s. I want to be open and frank with everyone about everything. And I have a feeling that it’s important that they see what George has to put up with. My nieces ask if they can help test George. Their parents look aghast at this point. So I explain what I’m doing to George. And then Minnie asks if she can inject him! Children have a wonderful way of cutting through any tension. And the rest of us manage to laugh. A lot.
But then there is the rush to get back to the hospital. Leaving the house is truly awful. We’d had been cuddled by a non-reality for a while. And almost forgotten about hospitals. And terror and…We dread getting on the train and heading back to where the noise is. And the lights. And the printers and the faxes and the parents. Back in the place where the sick people are. The nights on the pull out drawer of a bed have punished Tracy and me. And we hurry back at the flat, desperately trying to pick up more clothes and food for George. And it all feels too much. Tracy is going to stay at home tonight. And I will travel back on the train with George alone. Usually when one of us leaves the hospital it is never before 6 or 7pm. Not until he begins to sleep. But it will be good for Tracy to have longer at home. Longer than the length of an awful restless sleep before running to the train station at the crack of dawn.
I am packing his bag in his bedroom when it happens. The pins and needles on my body become like sharp stabbing pains. My vision becomes blurry and it feels as if someone has removed the top of my skull. And then my legs buckle. And my eyes start to shut and it all goes black for half a second. Half a second until my knees smash into the floor and my head thumps against the book case. The next thing I see is Tracy over me. Breathless and panicking. She is now insisting in going back to hospital with George but I won’t let her. I’m embarrassed that she should now be worrying about me and George. And furious with myself for letting this happen. I tell her that at no point did I lose consciousness and that I am completely capable of looking after George. It’s a white lie. I only lost consciousness for a moment. And I could feel it coming. I knew what was happening and I should have just stayed still for a moment. I know this because it is the fourth time it’s happened since George has been in hospital. I’m just very lucky that no one else was there to see the others.
Don’t get me wrong. I would never endanger George for the sake of my macho pride. The legs buckling are just as it was when Tracy was in labour. It happens almost daily as I make my way down to buy us some food. But I am in control now. And know that I have to stop and breathe. And if I’m carrying anything then I just put it down. I have never come close to completely blacking out. I can’t afford to. But I hate the feeling of vulnerability. I hate the fact that I am not tougher. But the nightmares have taken over me. And I have added up my hours of sleep over the past two and half weeks. I have not slept twenty hours in that time. Little over an hour a night as an average. And it’s getting the better of me. The adrenaline and fear has meant that I weigh myself the following day and I have shed nearly two stone in ten days now. I am barely over eleven stone and my hips jut out like sharp cliff edges on my pelvis. My wrinkles are deep and my face seems to hang in the sink when I wash it. It’s eating me. This pain and anxiety. And I just have to fight. And fight a lot harder. There are two people who are really depending on me to pull it together and stand up.
I like returning back to the hospital with George. It means that Tracy will remain at home and finally manage some more sleep. She can’t stay at the hospital, leaving it until the last minute to leave. I’m nervous on the train. Constantly checking that I have not forgotten any of his medication. I’m nervous that the train may get stuck on the line (this is South West Trains after all) and I won’t have enough insulin for George. And it occurs to me that this is how it will be for the rest of his life. This constant anxiety. I am sure it will get easier and one day we may even feel like we have some sort of control over his condition but right now it is incredibly daunting. But we do arrive back at the hospital and though it is shattering to think that this is our home for now, I do enjoy being with my boy and knowing that he is relying on me. We walk the corridors again and gaze at Big Ben and wonder when we might return home for good.
The night watch over our son is constant. I do manage to fall asleep once. And the nurse is comforting George when I open my eyes. I’m so angry with myself that I didn’t wake and leap to my feet. He rolls over and goes back to sleep. The nurse tells me to try and sleep but it is the one and only time I have not woken. It doesn’t happen again. As I’ve said many times, I need him to see me. I look to the two Mums’ on the beds surrounding me. And they wake through none of the howling of their children. They sleep with ear plugs. Or just roll over. They know that the nurse will come and that they will fix it. I’m baffled by that behaviour. I don’t know their situations, of course, but nevertheless, it does appear that many people in hospital appear to treat the place a little like a hotel. One that they are very disappointed with and feels it necessary to make daily complaints.
My impression of the other parents since our stay has been, well, awful. Occasionally I will hear them in the parent’s room. It’s a small room with a fridge and a freezer. A couple of sofa benches, a coffee and tea machine, a microwave and a sink. The congregate and discuss what is wrong with their children. They moan. Incessantly. They question the diagnosis of their kids to the enth degree without any knowledge and no apparent wisdom. They complain about different nurses or doctors. Angry at them for not ‘fixing’ their sons or daughters immediately. It appears that people believe that your child gets sick or injured, you take them to the hospital and they are magically restored within a day and sent home. There doesn’t seem to be a lot of give in this point of view.
The complaining is deafening. It’s almost as if they believe the doctors are deliberately conspiring to harm their children. They treat nurses and doctors with utter disrespect bordering on contempt. And never, ever say thank you. I do not engage with them. I couldn’t think of anything worse right now. I am frustrated. I am exhausted. I am desperate to get my family home. But I am blown away by the people who have cared for him since we’ve been in this hospital. I am sat in the waiting room when a woman relays to two other mothers that she has been offered accommodation by the hospital. She has been having a difficult time sleeping in the hospital and they have arranged for her to stay in a flat nearby. Free of charge. This sounds incredible. But she is moaning. She will not stop moaning.
‘The thing is’ She says.
‘I’m used to something much bigger at home’
Really? Is this where we’re at? The whole attitude of the parents is very much one of ‘I pay my taxes so…’ You can pay as much tax as you like but it does not give you the right to behave like a spoilt, entitled, vile mannered whingebag. I leave the parents room before I explode.
There is so much more of this. And you have to wonder why these doctors and nurses do their jobs. Clearly the odd consultant can surf the wave of ego. They are all looked upon by younger, hungry doctors, all with ambition and admiration in almost equal measure. And they have the power of decision making, the voice of authority. And they are uniform free! But it strikes me that the doctors and the nurses all make decisions, constantly. There are no thanks from anyone. And saying that you work for the NHS at parties is probably not a gateway to glorious conversation. You only have to read the papers. They will write only about cases of neglect, about undeserved pensions. Stories of negligence are apparently much more sexy and readable than everyday heroism. And how we all lap up these stories. So many people have an appalling view of the NHS without any experience of what they do. So where is the work satisfaction? It has amazed me how little the professionals expect in response to their hard graft and professionalism. It seems as such a distance from all of my sporting analogies. All sport has the ability to provide triumph for its competitors. The participants believe that they are in pursuit of some sort of heroic ‘greatness’. When do these doctors and nurses get their moment of triumph? We live in a world of appraisals and, certainly, if you are providing a service for the public then you are incredibly vulnerable to criticism and ‘evaluations’. But these professionals don’t appear to have the time for any of that. They are constantly fighting fire after fire, giving all of their expertise and skill over and over again. And no one seems to be ready to write about their performance on a piece of paper. No boardroom eulogies. Very, very rarely even a thank you from the customer.
Perhaps it’s the company that is making me pine for home so desperately. Life has stood still since we’ve been in hospital. I am self employed but so is Tracy. We are losing thousands of pounds in the short time we are here. No one is paying us for this leave. And it’s an oddly expensive business, living in a hospital. You are, in effect, eating out every meal. Even if it is only salty sandwiches out of the M&S downstairs. But it does all add up. And money is the last thing on your mind in times like these. You do not have the mental capability to worry about whether or not you are overspending on your salty sandwiches and rubber muffins. You are in survival mode, every ounce of concern you have is for George. It’s only money after all. But the sarnies do take their toll and we are both in awful health. Tracy says she has put a lot of weight on since we’ve been in hospital while I have gone very firmly in the other direction. You never quite feel clean in a hospital. You almost want to have a shower after you’ve been in the shower. And the smell of the hand washes starts to make you feel nauseous after a time. There is nowhere to sit and just be, bar the exceptional ‘sensory room’. This is a wonderful facility in a small darkened room at the end of the ward. But you are allowed in there only once a day. It’s a magical place, ultra violet lights and glow lamps and ball pits and glittered bean bags. A real haven, and just for a moment you are allowed to forget where you are. But this does not last. Back to sitting on a hard back chair and gazing at your son, or sitting in the parents room which smells of horsemeat microwave ready meals. It is anything but comfortable but hospitals are not supposed to be designed for parents to be there long term. But we would never, ever dream of leaving George’s side. I can’t imagine how frightened he must be, the only thing that is constant and familiar is the sight of our faces. I cannot comprehend how we are going to re-find our work routine when we return home but we will have to. Tracy has spent every day cancelling client’s appointments; she is fully booked up for the next three months at least. Hundreds of work emails go unanswered for me. Life really has stopped in this hospital. I want it all to begin again.