Diagnosis

As Tracy sleeps I search again for a part of George’s body which does not have bruising, blood or a line sticking out of it. I am struck by how wrong this sight is. George has pristine skin, bright blue, enormous eyes with sparkles in them and that gorgeous doughy flesh. His hair is thick for a baby, bright blonde. To look at him would bring an overpowering wish to hold him, squeeze that bountiful flesh, that velvet skin, and smell that dizzying smell on the top of his head. He always looks utterly perfect, beautiful, and brand new. He is. He’s six months old. And yet now he looks ravaged, the thick hair is shaved at the temple where there is a bloody hole. His eyes have black circles underneath them; his arm is covered in bruising in the crook of his elbow. His shins have holes in them and dried blood creeps all the way up his leg. His hands are covered in bruises and plasters and wires are scattered all over him. The tube up his nose seems to trouble me more than all of these horrible sights. The tube and the closed eyes and the lifeless, battered little body. I’ve never seen anything that looks so wrong. And I hold his tiny hand. And for a while, I am stuck in another of those outer body experiences where it feels as if I’m stuck in a crap film. The tiredness does mean that nothing is really sinking in and I feel as if I’m being punched all over the place. Punched groggy, punched delirious, and punched into the ground. But sitting. By his bed. And watching his tiny chest rise and fall. And staring at his eyelids in the hope that they will suddenly open. Suddenly it begins to sink right in. I am overcome by the feeling that we will never have our son back as he was.

The warnings about the brain damage have left me wondering how much, if any of him will return. His giggle used to run flush through every vein of my body and kiss every pore of my skin. It was a heavenly sound. And it could send me soaring above the earth for a time. There was nothing I would not sink to, in order to illicit one of his laughs. Rubbing my hair into his belly always produced a wonderful belly chuckle. I lean over him to see around fifteen wires across his body and a heavily bruised hand on his chest.

And then I start to talk to him. All I’d manage up to now was to tell him that his Daddy was ‘here’. And I said that over and over again. But now I tell him a little more. I tell him that I love him in a way I never thought it possible to love anyone. That he makes me so proud that I could burst through my skin. That he makes me and his Mum so happy. That he makes us laugh. That he makes us cry. That he lifts us to a place of happiness we’ve not known before. And I tell him that he must keep on fighting. That he has uncles and an aunt and Grannies and Granddads who need him in their lives. I tell him that he is so loved. And that life is something he has to experience. His journey will be a magical one if he just gets up, if he can just keep on fighting. I tell him that he is my entire world. And ask him to get better. Again. And again. And again. I say please, over and over. All the time my words lose any whiff of eloquence, my throat tightens and wobbles, and my heart is starting to burst. Please. Please. Please.

I talk to George all the time when he is awake. Try and watch cartoons with him. Sing to him. Gurn. A lot. But he sleeps. Shane returns that day and tells us that it is still a little early to know about brain damage with George. And that today will be vital for his progress. He reminds us that he is safe. And he tells us again, just how tough having a young child with diabetes can be. But I never think about that. I remain convinced that this is not what is wrong with him. And though they are sure this is what nearly killed him, all I think about is the brain damage. So when, an hour later, I am gurning at George and blowing raspberries at him, and he reaches up and grabs my hospital pass, I feel pure elation. Tracy tells me that he may just have done this as some sort of trigger reaction. I gleefully tell the nurse what has happened. She tries to placate me with a gentle ‘that’s a good sign’ but she is full of caution. I am so happy to have seen some sign of genuine life. Tracy does her best to becalm me. But I have promised her already that he will get better. It’s all I knew what to say. She didn’t believe me at the time. And I’m not sure I believed me. But I knew I had to say it. What if they are right? I am already deluding myself because the reality will be far too much to bear. I cannot accept that he won’t come back to us. I can’t.

Another night. Less than an hour of sleep. I think about twenty five minutes. And I woke to the most awful nightmare. I had gone running from the hospital lift to George’s bed. I had fallen on the floor by his bed. And when I stood up, he was blue, eyes wide open and dead. I’m covered in sweat from the dream. I go to the shower. I look down at my body and see that the weight is falling off me. I don’t have any physical strength and the nausea is quite overpowering. I hover over the toilet for five minutes but I can’t manage to be sick. I don’t want Tracy to hear me. She is actually asleep and I’m desperate for her to get two hours. So I turn on the shower. And my legs buckle from under me. I stand up again. And my head feels as if the top of my skull has been removed. And I go down again. The water is hitting the top of my head. And so I just focus on breathing. The door is locked. And I can only hope that Tracy is asleep still. I don’t want her to see me like this. She’d be terrified. And I am alright. I think I am. It’s just extreme tiredness and the fever. My head starts to come back. I grab the plastic hand rail in the cubicle and I have the strength to pull myself up. I have a moment of shame, it all feels incredibly ‘unmanly’ to have my body failing me at a time when my family needs me the most. My shame quickly turns to anger, a tinge of self-loathing. I actually hit myself in the face a few times. A moment of pathetic empty machismo does nothing but leave me with a sore jaw. So I finish the shower. I want to run down to see if George is alright. But I can’t leave Tracy and let her be alone when she wakes. George has the most capable people in the world looking after him right now after all. So I sit on the edge of Tracy’s bed until just less than two hours have passed. And I wake her gently. Very gently. I know that when she wakes she will be back in her nightmare. I speak softly and calmly and spout words of positivity. Before I have got half way through my pre-prepared sermon, Tracy picks up her clothes and begins to sprint for the door, back to see her son.

It comes at me very quickly. Like a train in fact. And throws me into a panic I’ve never known before in my life. I haven’t cried. Not in front of my wife. I made a conscious decision not to do that very early on. And I’m sticking to it. At least, I am sticking to it while I am still in sight of my wife and son. This is the manly thing to do, isn’t it? I’m supposed to endure and be there to be leant on; others should gain strength from my stoicism. Shouldn’t they? It is me who goes down to buy the sandwiches each day, or the breakfast, or to fetch the drinks. It requires a journey into the lift. Down four floors. And then a walk. Through the reception of the Evelina and into Guys Hospital. It’s a long walk. Well. Four hundred meters or so. Down a long corridor full of visitors, patients, doctors and nurses and past a piano. I think it’s a sort of makeshift chapel which houses the piano. It has pews and the decor looks appropriate. I don’t really know. But there is an elderly man often playing the ivories. It never sounds quite in tune but the sounds echo down the halls and the music seems to carry upon the air. It always feels poignant. This may be to do with my mental instability and the setting, but I find it heartbreaking. I weep as soon as I hear this music. I don’t make a sound, bear in mind I have to walk past probably in excess of two hundred people on one of these sojourns. But the tears come and I can’t stop them. I can dry them away by the time I pay for the food. I am English after all. And I don’t want to make anyone uncomfortable. And I sort myself out in that lift on the way back up. My eyes are dry when I return. I have talked to myself. I need to be positive. I need to lead us all up again.

One thing I have learned is not to linger on something for too long. If you are to worry on a problem, to continue to mull over it will only exacerbate the problem. And I also know that there are some places in your mind to which you should not travel. We all know about rational fears. We have them for a reason. But to indulge in them for too long can cause problems. Take a simple scenario; you are travelling up three floors in a lift. The rational fear is to worry about being in an enclosed space. To worry about being suspended in the air in a lift shaft. To worry that the doors will never open again. But don’t go there. I have only ever been stuck in one lift. It was when I worked in the stock room of a Littlewoods department store, in which the service lift would jam almost every time you would use it. I would lean on the bell for sometimes as long as an hour before someone came to retrieve me. And that’s the point, even if you do get stuck in a lift (a very rare occurrence) there is a very good chance you will be out of there, safe and sound and very soon. But this rule of not letting your mind ‘go there’ applies to lots of areas of life. I could give you the stats on plane crashes but you’ve heard them all before and it’s not going to stop you being terrified the moment that plane starts to leave the ground. I think that the so called ‘mentally tough’ are very good at shutting down parts of the brain. And right now, in sitting by George’s hospital bed, and waiting, my mind has decided that it would like to travel.

The thoughts start to seep into my mind. My brain dead son. My son that never looks in my eyes again. My son that never smiles at me again. And the thoughts escalate. I hear the recurring long beep of the heart monitor which we have stared at every second since we’ve been here. I see the line go flat and the shriek of the beep. Nurses flailing around our dead son. Tracy sees me lost in thought. ‘Are you alright?’ she asks. I nod. And I smile at her. I tell her that tomorrow he will be laughing and smiling at us. And then I tell her that I have to go to the toilet. My mind is completely unraveling and I can’t let her see what is going to come next. I kiss Tracy and walk towards the doors. I am almost certain that I am going to be sick, or fall over or…

I walk out of the doors and into the hallway. There are two or three people waiting by the lift. I walk past them into a glass corridor and no one can see me now. I am on the verge of tears and I can’t get my breath. Panic is rising into my chest and seemingly blocking any air. I’m getting hotter and hotter and I’m terrified at this point. I become aware of a small group of people to my right, aware that they can see me. I do lots of puffing of my cheeks. I look up and open my eyes wide, all in an attempt to hold back the tears. And when I look back down there is a nurse looking at me. She holds me eye contact. Something in her gaze demands that I stay with her. And she smiles at me. A gentle smile. It seems like she ‘gets it’. I expect she’s seen lots of men unraveling in hallways. Then she holds up her fist at me and shakes it, a non-verbal ‘come on!’ of encouragement, the sort a football manager would give to me from across the football field. And then she breaks into a soft laugh. And all I can do is laugh back. Laugh at myself clinging on for dear life in the hallway. And in that moment the panic has gone. I remember what I am here for. And I get back to holding my family together. We get back to holding each other together. I don’t know the nurses name. I never got to meet her. But I see her the next night and go to speak to her to say thank you, she rushes to a bed before I reach her to help restrain a fitting child. She strokes his head and holds an arm down at the same time, speaking gently to him as another nurse helps hold him in a safe position. I don’t stop to stare at this, if feels way beyond invasive, so I move away. I will talk to this remarkable lady later. Except, I never see her again. I never get to say thank you for the most compassionate gesture I have ever been on the receiving end of. I wanted her to know that I think she might have changed my life a little. And helped me at a moment where I felt as lonely and helpless as I had been since everyone in the playground left Geoff to unload on me. I do wonder how many times she has done such things. And how it really isn’t part of the job description. Such extraordinary empathy. And human emotional intelligence. And I expect she does it every working day.

We sleep two hours the next night. And run down to be with George today. And he wakes. Properly wakes. His eyes are unmistakably blue again. There is still an awful lot of red in the whites of those massive eyes. But I know that he recognises me. There is life there now. His eyes are definitely smiling even if his face is not. It’s quite clear that he is tracking our movements. Only ever so slightly, his movement is tiny. But he is able to wiggle his legs a little. And we are so thrilled. Huddled over his face and giggling at him. He seems to be almost watching the cartoons but I am busy trying to get a response from him. Any kind of response. Widening my eyes, making noises, poking out my tongue, hitting myself in the face. Disappearing and reappearing. And then it happens. I lean over him with the chord from my hooded top and wiggle it in his face. And he smiles. That massive joyful smile. That George smile. And I let out an odd cry/laugh. I suppose it’s the noise that comes out when you are utterly joyful and relieved, all in the same breath. Tracy is in tears again, but this time they are brushed away by the enormous smile on her face. While it is evident that our boy recognises us again, it is also quite clear that it is the first time in days that Tracy has recognised this six month old as her son. It sounds ridiculous, but there is intelligence behind that grin of his, a wicked sense of fun and I hope, so much, that I am not deluding myself. Paula confirms that he does look better. She asks us if he is following us when we move. His eyes try and find me whenever I move around the bed, despite the fact that his head and neck won’t move for him. ‘They’re all really good signs’ Paula says.

We have to ask Paula to assist us if we want to hold George in our arms. For Tracy to breast feed him again, at least seven wires have to be carefully held and supported to he can be transported the short distance into Tracy’s lap. She look so excited at the prospect of having that special bond with her son again. I am very nervous that he will not be able to feed and she will feel more disappointment. But the moment he is on her lap, he begins to guzzle and guzzle. Paula, Tracy and I laugh at this. How much Tracy has wanted to pick him up through all of this. How much she has wanted to throw her arms around him. Just as she has always done in any time of distress since his birth. But she has had to stand back and watch the agony unfold, a form of mental torture I would not wish upon anyone. George look up from Tracy’s breast and smiles up at her. She wants to cry. So I laugh and giggle along with him and Tracy giggles too. We’ve done enough crying for now. George is coming back. I’m sure that George is coming back.

My brother Steve arrives a few hours later. He remains very focused in his role as a ‘beacon of positivity’. I’ve always taken my lead from him but it’s funny to watch him in action. He tells Tracy how strong George looks and that he looks beyond healthy. And he’s only lying a little bit. His eyes are still a very strange colour but as the day goes on he is able to move his body more and more. Steve, Tom and Susie have been constant with their visits to us in this short space of time. I know that Ilia and Helena have remained looking after the kids while they came. But I imagine they don’t want to see George like this. And I don’t blame them at all. They have sent many lovely and supportive messages over the phone but, as Mothers, I think it is a little too raw. My Mum says that Helena is terrified that her son Alex may develop the same condition and I can completely understand how they feel. It is every Mum’s worst nightmare and they have seen it come true. I can see the strain on Tom and Steve’s faces when they are with us but they perform well in front of Tracy. My Mum tells me that the minute my sister left the unit she burst into floods of tears. She did so well to hold it together. I know how much they all love George and I know how hard it is for them all. I can’t imagine how I would be feeling if this were happening to one of my nieces or nephews. I know I would feel even more helpless than I already do and that might just kill me.

Shane returns later that morning. And this time he tells us that George is beginning to progress. We grab onto one another at this point. And finally release a breath or two.

‘But the hard work is about to begin for you guys’ Shane says.

Oh. I thought we had already done quite a bit of hard work. I don’t say anything.

‘Type one Diabetes, in a baby so young, is going to be incredibly tough on you both. It’s a massive, massive learning curve and very hard to manage for the parents’. I’m still dwelling on the ‘challenging’ bit of what Shane said. And I think, surely diabetes is manageable. Didn’t Gary Mabbutt (Tottenham Hotspur legend) have diabetes? He played for Spurs. And England. And he was brilliant. If diabetes is all we are dealing with then we’re fine. As long as he’s going to be alright. We want our son back. Anything ‘other’ we can cope with.

‘You will be transferred from here up to the ward when George is stable enough. And then the diabetes team will take you through it. Don’t worry. You have a lot to learn but they are a great team. They will need to learn how best to manage George’s sugar levels. And there are a few options. But we will let them take you through it. Your son is a very tough boy. He has been through an awful lot. And it will be your turn when you do return home’.

I ask Shane about the brain damage. He tells me that they can’t know for sure but the signs are very good that he is alert, feeding and awake. But they need to be cautious. They should know a good deal more in the next twenty four hours. And this sounds positive. This we will take. Yes, more waiting, but I am starting to recognise my boy again. Though Tracy is less sure, I feel confident that we will have ‘all’ of George back. I tell Tracy that I still don’t think it can be diabetes. And she thinks the same. They haven’t ruled out a peculiar or undetected virus. And I know they are saying things like 99% certain. But Tracy is with me, she cannot believe for one second that he has diabetes. It sounds so far-fetched, so distant and, I’ll be honest, it sounds a little tame for all the horrors he has been through.

Later that day Paula says we can remove some of the wires from George. He no longer requires half the fluids he was on two days ago. The wire into his nose and thigh remain but he is now starting to move around a little. Steve returns that day and insists that you would ‘never know he had even been ill’. He’s only lying a little this time, there is so much energy returning to his body. We don’t think of Shane’s words of warning anymore. Our little boy is coming back to life in front of our eyes.

Paula brings us over a book, covered in stickers and drawings. She tells us that it is George’s diary from his time in intensive care. She also has a ‘Bravery Certificate’ for George, which she pins to his cot. The dairy has been decorated with lots of stickers of dogs and stars and rainbows, it’s beautiful. The dogs are random. Tracy and I are not good at all with dogs. We have no idea why. Until Radi bounds over with that enormous grin on his face.

‘It for his dog. He love his dog’

And Radi is quite right. George’s sleeping companion has always been a cuddly dog. In fact, it never leaves his side. I open George’s diary and several of the nurses have written inside about George’s extraordinary courage. There is a page long description from Paula about why George came to intensive care and it’s followed by little passages of his bravery. I get about a paragraph down before I can feel that I am going to do a lot more weeping. So I stop myself. Will read this later when Paula and Radi are not looking at me. Instead I thank them profusely again. It’s such an extraordinary and touching gesture, full of kindness and compassion. These people are very busy. They do not have a lot of time on their hands. I’ve seen that first hand for three days now. And still they manage gestures such as this in the very small window when these terrified parents actually bugger off for a bit. I wanted to hug them both. But am so torn about whether or not this is appropriate behavior. I quickly decide that it really isn’t. I could get away with it when George was born in that operating theatre. It was quickly laughed off. By I don’t want them to feel awkward. I am not a touchy feely person at all. Which is a bit of a problem in my industry. Actors I’ve met all of twice seem to want to greet me with a long hug, which causes me some consternation. Women who insist on two odd air kisses, followed by odd clinches also cause me trouble. My problem is not having strange people in contact with me (though I’m not good at this) it is the fact that the gesture just isn’t genuine. There are people I appreciate, many I love and an awful lot more I like a great deal. A hug feels like an appropriate greeting for a good friend. Or a lovely big thank you for someone you might know less well but has performed an act of beautiful kindness. But since we have arrived in hospital I feel every fibre of me wanting to hug Meisha, John, Paula, Jenny, Victoria, Radi and everyone else who has helped George and Tracy and I. But I do restrain myself. I’m not entirely in control of my emotions right now, sleep depraved and unsteady. I worry any hug would be far too full on and bordering on indecent. So it is an awful lot of verbal thank yous and telling people how much it means to us. All of this is very, very genuine!

 

I lean over George and start throwing my dignity all over the intensive care unit again. And he giggles. And this time it has some volume. His voice is so hoarse from the dehydration but his giggle is there. I am wearing a hoodie, the strings from the neck fall down towards George’s face and he begins to suck on the material. We have a picture of this. His eyes are enormous and they are returning to full life. And as the day goes on he is able to almost crawl in his cot. There is no doubt now, the glint in his eye, the wicked, yet innocent grin. All of his character pouring out in front of us. He likes Radi and his singing, very much. He watches him walk around the ward. But he is very, very fond of all of the female nurses. And flirts outrageously with all of them. He has always been like this. I think he is completely aware of how cute his is and he plays on it dreadfully. He likes women very, very much and makes it quite clear at every available opportunity. It’s a joyful time this. I don’t need a Doctor to tell me that he is alright now. He is, every inch, George. Our boy. Our world.