The ‘D’ word. In Permanent marker.

We are walking around the Intensive Care Unit. I am walking George. He is in my arms, disconnected from all of those tubes for the first time. He smiles at everyone as I do laps around the Unit. My Baby Bjorn pride is not a patch on this. It’s magical to walk around with him. To feel like a normal father and son again. Feel his skin on mine. It’s been four days in intensive care. It’s always so sparse. So few parents to be seen. I wonder where they all are? And try not to think too much about all these sick children. The nurses all stop to smile at George. Many of them want to lift him up and carry him themselves. And he will grin at them over and over again. I know that we are to be moved to the Ward tomorrow. We don’t know what time but we do know that this is the last night that George will in Intensive Care. And that has a wonderful ring to it. But I do feel a hint of sadness that he will no longer be under the supervision of these life changing people. A roomful of life changers. And it strikes me how odd this must be for them all. They have performed this extraordinary, diligent, professional and thorough caring of our son. And, against all of the odds, they have made him better. He is going to live. And immediately, he is gone. Off to the Ward. We can only just see the whites of his eyes and he is out of there. No wonder they all want to hold him. Tom comes to see us at this point. It’s late, he’s come straight from work, and he must be desperate to get home to his children. And yet he is here. He’s so happy to see George. And even happier to hold him and walk him through the ward. He is almost being held aloft, trophy like, a beacon of the astonishing achievement of these medical professionals. We’re aware that we must quiet our joy a little. There are still so many kids in here with a long battle ahead of them. And so, as it turns out, have we. There is no release date for George. He is still a long way from stable and his blood sugar is all over the place. We have an awful lot to learn about Diabetes.

It’s Paula who wheels George’s cot up to what is called ‘The Mountain Ward’. I don’t know what to expect but John has already warned us that it is ‘very different up there’. And that we may be in for quite a shock. What hits us when we walk in is how little space there is compared to the Intensive Care Unit. There are bays. And in each bay there are eight beds, or cots. The noise is the real shock. Children screaming, laughing, crying. There are printers and faxes whurring away and phones ringing. Buzzers sounding. It is bedlam compared with the tranquility of Intensive Care. Paula leaves us. With George’s Certificate For Bravery stuck to his cot. And it feels like saying goodbye to a dear friend. We are introduced to a very young nurse called Lucy, who is handed a lancet to get blood from George for a test. She looks rattled. She’s never used the lancet before. The doctor has to leave before it can be explained and I see Lucy’s look of panic. Tracy looks utterly terrified. We had been in such safe hands and now this feels like organised panic. Lucy looks annoyed at the short shrift she’s received from the doctor. She asks us if we know how to use the lancet. We’ve never seen on in our lives. Lucy is gone now. And we have no idea what we are to do or who is looking after George. We look around us at the other children. A heavily disabled boy across from us, a sleeping toddler in the bed next to us and a very premature baby in the next bay, we recognise him from Intensive Care. Tracy looks like she is giving up. We need to quickly make a home of the place and she will feel settled. But it’s all so exposing. Any idea of privacy is laughable. I can see that Tracy needs to cry. I pull the curtain around the bed so we can speak and she can do what she needs to. I’m quickly told by a nurse that they need to be able to see George at all times. Tracy asks where we are supposed to sleep. The nurse puts her hand on the cupboard behind George and pulls the handle. Out comes a tiny single ‘bed’ and folds out onto the floor under George’s cot. The head of which is next to the whurring printers and phones and entry buzzers. Tracy and I can only look at one another, a tiny foam pillow falls to the floor and we can only laugh.

We are reeling now. Tracy is scrambling around, trying to make a home of the ‘bay’. There is nowhere to put our bags or the food for George. We have packs and packs of his ‘fruit pouches’ but he is not allowed those at the moment. We’ve been feeding him his milk formula and Tracy has been breast feeding but that is as far as we are. We ask the nurse some questions about George’s food but she tells us that the doctor will be around to talk to us later. The noise means that I feel completely disorientated. The sheer number of people inside the ward is overwhelming. It had felt like our pain had been private before, we could retreat into one another and find quiet in Intensive Care but now everything is as public as can be. There is only one chair by the bed. There simply are no couples together in the hospital anywhere it seems. I perch on the cot and get out George’s toys and place them all over his bed. I need to distract him. He can’t see what is happening to his Mum. She has not slept, she has not stopped being completely terrified for days now. And she is in pieces. She starts to just zone out as she sits in the chair. It’s crushed Tracy now and she can’t even engage anymore. We are on our own and all I can do is gurn at my boy, I have to hope that his Mum will come back to us.

And then a woman called Barbara approaches. She has a German tilt to her accent. She’s open and friendly and explains that she is from the diabetes team. ‘Is now a good time to talk?’ It’s a terrible time actually but I don’t say that. I need to know anything I can about George. So Barbara fetches a couple of chairs and takes out some needles. And she begins to tell us how to dissemble them and assemble them and administer injections. What!??! I had no idea that we would be doing this now. When? How often? How? My head is spinning. She’s being very friendly and kind and warm but my head is speaking, shouting various panic ridden expletives and I can’t really hear. Tracy has not looked at Barbara once. She stares into the distance with a look of hurt and anger on her face. It’s far, far too much and she cannot bring herself to engage. Barbara keeps going with her demonstration but she sees the stress etched on Tracy’s face. But there is a politeness to Barbara, she is not about to raise the question as to why Trace has a face like she does. I stop her then. I try and be as polite as I can. I’m still very aware of how grateful we need to be to all of these people but right now we are defeated. I explain to Barbara that we are both very tired. And that there may be a better time. And Barbara looks a little hurt. I feel terrible about that. She hurries away and agrees to return later. My heart sinks as she leaves but I have to protect Tracy. She looked as if she was about to fold. I give Tracy a cuddle. She cries. I am rubbing her back and making faces to distract George at the same time. He seems oblivious. Part of him likes the noise and the comings and goings. He looks completely unflustered. His Mum and Dad are on their knees.

The consultant arrives that afternoon. Right as my brother Steve arrives from work. I can only wave to Steve as he walks up and down the corridor with George in his arms. I need to listen to what is to come. His name is Doctor Tony Hulse. He has a professorial air about him, his words are careful, articulate and a little clipped, in a way that suggests a formidable English Schooling. But there is a glint behind his eyes, as if they were ready to laugh if he were really allowed. And he quickly is. We joke about George and the fact that he guzzles so much milk. And the fact that he couldn’t look less sick if he tried (he is very podgy) and how often he is prone to smiling at nurses. Tony draws diagrams on a piece of paper to show what happens to the body when the Pancreas ceases to function. It was a virus that effectively killed the organ. There is no rhyme or reason why this happened to George. He talks to us about ketones which are the acid remaining when the body burns its own fat. When the body has insufficient insulin, it cannot get glucose from the blood into the body’s cells to use as energy and will instead begin to burn fat. When the body is burning too much fat, it may cause ketones to become present in the bloodstream. George’s blood was turning to acid which is why he was struggling so terribly for breath.

He shows us what insulin can do for our boy. How it is vital in controlling his blood sugar levels and for George’s survival. He is so calm and clear. His passion for what he does is so palpable that I am utterly gripped by him. It’s been pretty clear since we’ve been in hospital that George’s age and diagnosis have made him a very special case. All of the staff are intrigued by him and his name is quickly known all around the building. It’s a bit of a dark observation but they are all quite excited by this ‘unique’ case in a way. I don’t mind this at all, their fascination is all based around their professional passion. We’ve never, ever been treated with anything other than incredible compassion since we’ve been here. And George has been positively adored by everyone. And in a funny way it makes me convinced that he will receive fantastic care. If they are so interested by his diagnosis and if he is so notorious then I think it can only help him George in the future. Tony explains that George is incredibly insulin sensitive. Not only is he their youngest ever patient to be diagnosed, he is, unsurprisingly (despite all the milk) the smallest. So very small amounts of the drug have a huge effect. He tells us that the average person has a blood sugar level of between 4 and 6. This changes before and after meals of course but largely remains within that range. This is quite frightening as we have only known George to be anything from 13-19. He explains that they are keeping his levels safely high for the moment. They would like him around 10. But if he were to dip below a level of 4 it must be treated by giving him fruit juice or glucogel. Basically, glucose in a tube. If his levels get much lower than 3 then he is in serious danger of slipping into a coma.

Now we understand that carbohydrate content is what we have to be wary of when feeding George. The carbs are what turn to sugar in the blood and they are what will send his levels high. In time we will know just how much insulin George will require for say, a fruit pouch, but at the moment we have no idea. This is what they will have to work out while he is in hospital. And this may take some time. Tony is keen for Tracy not to have to give up breast feeding for now, if it is what she wants to do. But it is very hard to quantify the carbs in breast milk. And no two feeds are the same. At the moment he is only having breast milk for a couple of his night feeds but this is a conversation Tracy and I will have to have.

Dr.Hulse also recommends that we run a test for a very rare type of diabetes called MODY which stands for Maturity onset diabetes of the young. The test is a little dangerous, as it will require giving George no insulin for a long enough period to determine whether or not the alternative medication works. There is a chance that it is this rare type, an increased chance given that George is the youngest case of diabetes they’ve ever had at this hospital. We pray that it is MODY. It will mean that he has orally administered medication twice a day. No injections, no permanent wires, he will be, to the outside eye, just like every other child.

We are to wait for a couple of days for George to be on this test. Tracy stays with George alone that first night on the ward. I leave as late as I am allowed to, which is around eight p.m. Tracy begs me to go earlier and have something to eat at home with my parents. I do not want to go. Not one little part of me can bear the idea of leaving my boy. And I am even more worried about Tracy. I know how exhausted she is. And I know that she will feel frightened without me there. And I know, more and more of every day that we are together, just how important ‘being together’ has become. I stop to think that I have not spent one night away from my son since he was born. I have spent one night away from my wife in almost three years.

It is a teary goodbye at the door. She carries George with her to see me off. She tells me not to worry, many, many times and I feel like my heart is being torn out. Leaving goes against every instinct I have had for the past five days of being here. I go with my Mum and Dad. And I am checking my phone every ten metres as we walk towards Waterloo station. He is stable now. Or at least ‘unstable stable’ in that the nurses will inject him with insulin each time his blood sugars run very high. We watch them pin prick his foot to draw blood and then hold a small piece of equipment with a testing strip, which sucks up the blood. The meter then counts down five seconds before giving a reading. The correct level for any human being is between 4 and 6. George is hovering somewhere between 13 and 22 since we have been in hospital. But they assure us that they are running him higher as it is safer. He is then administered a drug called ‘Humilin’ which comes in doses of 0.5ml and is injected with a device which looks a lot like a pen. This is what Barbara was trying to show us when we were mid meltdown.

I can’t eat at my parent’s house. My Mother insists on putting food inside me before I go home. And I thought I was doing a great job of hiding the dramatic weight loss. All I think about are my wife and son. And when they drop me back at the flat I feel incredibly alone. I try to distract myself by collecting more clothes and food pouches for George. It’s startling just how empty the flat is without Tracy and George. It has lost all colour and character and merely feels like a cell, nothing like a home anymore. I do everything at a hundred miles an hour so I don’t have to think too much. George has just begun eating solid foods. They are basically mashed up vegetables stuffed into ice cube trays and frozen. We mix and match three cubes of carrot, parsnip and peas for example. We need to know the exact carb content of all of these foods and a dietician is coming to speak to us tomorrow to help. On a lot of foods it has the exact carb content on the packaging but when you are cooking anything by yourself, weighing scales and some math’s are required. I break in his bedroom. The sight of his toys, his empty cot. I can see his smiling face peering between the bars of his sleeping den and I am once again knocked over by a wave of emotion. Sadness, grief (I know how odd that reads written down), fear, vulnerability and helplessness. A wave that knocks me off my feet and has me clinging to his sleep suit on the bedroom floor.

I go to bed as soon as I’ve packed a bag. Now is the time to sleep. Tracy told me to recover. Get some rest. And come back strong in the morning. I set an alarm for 530 a.m. I can be on the 6.05 train and back in a few hours. I get a text. My heart jumps. When this all started, the nightmare of it all took so long to land in reality. Now it seems, I am expecting horror at every bleep of the phone. ‘We miss you already. You are the most incredible Daddy in the whole world and we love you so, so muchxxxxxxxxxxxx’ and I’m alone. So crying is quite allowed. But these tears are less savage, this wave much less complicated. I only feel love. But I sleep less than forty minutes. I must check my phone every two minutes from midnight until 5 a.m. And I run back to the station to see my family.

I arrive in darkness and the ward appears to be quiet. I’m not supposed to be here at this time and wonder if I might be told off. But I am buzzed in and sneak down the darkened ward to our bay. The curtains are drawn. I peel them back to see my wife, slumped onto her hand as she sits in a chair breast feeding George ‘Hello’ she smiles. I am removed from myself again, staring at this image of my wife. She’s utterly broken to the outside eye, her body is slumped, her eyes, punch tired, barely able to lift her head. And yet she craddles George with such exquisite tenderness and care. If you look closely enough at her eyes, they burn with love for him. It is a beautiful sight. ‘I thought I told you to get some sleep’ she laughs. I lie and tell her that I feel great. George looks up from her breast and gives me an enormous grin. I’m so happy to be back with them.

Tracy is so tired. The ward was bedlam through the night. And even when it did calm, and a child was not screaming or shouting, the printers and faxes and telephones by her head were roaring all night. She looks as if she has not slept a second. George woke only twice in the night, which is amazing for him. He doesn’t go to sleep until 10pm and wakes at 6. She makes sure that he sees her face when he does wake. Many other Mums’ stick in the ear plugs and roll over, waking nine hours later, no matter if their child is screaming the place down. ‘The nurse will deal with it.’ I should be careful here as I don’t know what was wrong with each of those kids but it did seem odd that the hospital could be treated like a crèche at times. I’m quickly realising the staggering sense of entitlement that exists amongst the parents. ‘We pay our taxes’ is one of the most boring, ignorant and tired messages peddled from these people. Constantly questioning the diagnosis of their children, constantly belittling and abusing staff. Everyone’s experience is different, of course. But there does seem to be genuine outrage that any of their kids is not diagnosed and cured within twenty four hours of arriving. And if this doesn’t happen, then the only explanation is incompetence on a grand scale. I already know that I owe these people my life.

Tracy goes for a shower on the ward while I hold George in my arms. He looks full of life now, ready to go and find the toys on the ward. She claims she slept four hours but there is not much left of her. She’s an odd whitey, grey colour. She is so beautiful Tracy. One of those very annoying people who never seems to manage to look anything other than beautiful. But right now I can’t even really see my wife. I tell her that I will stay the night with George. At the very least we have to take turns in staying. It’s all far too much. She makes the argument about his morning feed but that is shot down by the fact that I have arrived in the middle of it. She could go home to bed and still make it back for morning. She won’t say yes, she can’t bring herself to. I know exactly what she’s feeling. If George is going to have to fight, she want to be there with him. If he is going to be scared, she wants to be there with him. And there’s an odd feeling that came to me the previous night. I needed George. His strength, his fortitude, the look in his eyes that would tell me that he was, in fact, okay. Tracy will have to give in on this one, but I will slowly wear her down as the day goes on. The fact that I have my toothbrush and all my overnight stuff with me is not one I’ll share until I have to push her out of the door.

Barbara returns that morning and the first thing I do is apologise. A lot. I take her into the parent’s room and explain how tough it has been for my wife and that she is in a million pieces right now. I tell her that we were both frightened and exhausted and the information was flying over our heads. We were/are in a state of trauma, and any rational and clear thought felt light years away. She is very understanding. And so gentle with everything she says. She seems to find it strange that I need to apologise and dismisses the notion that we may have appeared rude. Barbara is just a very nice person. This much is evident within about five minutes of speaking to her And she is great with her tutorial. She takes us through how to administer a blood test. And it does appear to be quite tricky to get the right amount of blood from George. The pin pricks are done on his toes. A tiny needle, too small to be seen by the human eye, juts out of the base of what looks like a pen. It’s depth can be changed, depending on which toe we are to choose to inject. He never, ever flinches. I have already seen other kids scream when they have their tests done so we are particularly fortunate. If you don’t get enough blood, you have to abandon the test and try again on a different toe. It takes a while, it seems particularly tricky to get any blood from him. I’m stunned that the only thing he even half complains about is having his toe squeezed a bit. Barbara then shows us the two different needles or, ‘pens’, we will need to inject George with. One is for use twice a day and lasts over a twelve hour period and is called ‘Levimir’ and the other is to correct his levels and has an instant affect ‘Humilin’. George is due an injection. This time it will be a proper needle, nothing at all like a pen. They stare down at us intimidatingly. I ask if I can be the one who administers the drugs. I’m not keen on needles. Who on earth is? I wanted describe myself as ‘squeamish’ but I can get on with it if they are required. For me. Injecting the person I love the most in the world. The person who is but six months old, does cause me trouble. But it is an indulgent feeling. I need to get over it. Immediately. We are going to have to learn to do this. And I want control of my sons care. Now.

I hold George’s leg so he can’t kick or jolt. I squeeze the flesh to make sure I am not near any bone. And I push the needle in. He doesn’t flinch (immense pride) and then I have to count to ten seconds before removing the needle. The ten second bit is the scary part as keeping him still for that length of time can be quite tricky. But we do it. Tracy has already begun a logbook in George’s diary. We will record every blood test, what time it was done and what the blood glucose number was. We will record the time of every injection and we will record every one of his meals. Barbara is impressed with our levels of dedication and Tracy already wants to have a turn of injecting. I love this session. I love the idea that we can begin to take some control for looking after our son. We tell the nurse on our station that we will do all of the injections for George and share our logbook with her. Lucy looks very relieved!

Barbara begins to tell us of what to do in extreme situations. There is a special needle which is used is George were to slip into a coma. She will return to show us how to use that particular piece of equipment. She tells us of other logistics, schools, nurseries etc and it is all incredibly helpful and a little intimidating (Shane wasn’t lying) but it’s good to learn. And it does strike me that Tracy and I have just begun to accept George’s condition. A little. And though the information is still utterly overwhelming, it does feel as though we may be able to fight back against the tide. And we can begin to take some control. And stop just watching and agonising, hoping, praying. And then Barbara tells us that George will be eligible for disability allowance and Carer’s Allowance. At this point Tracy runs from the parent’s room and into the ward.

I saw Tracy’s face crumple as she started to run. I saw the tears fall from her eyes. And it was on that word ‘disability’ that they started to tumble. Barbara looks very worried. I tell her not to worry and that Tracy is just overwhelmed and tired. Barbara is very understanding and I rush through to Tracy. My parents are walking towards me with a look of fear. Tracy has her head buried into the mattress of George’s cot. I tell my parents to take George for a walk up the ward and I hold on to Tracy’s back. I am doing that awful back rubbing thing again as I kiss her on the cheek. I don’t know what else to do. ‘It’s just a word’ I say. But Tracy is heaving huge great sobs and she can’t even speak. ‘He’s not disabled, it’s a word. He is going to be alright. I promise he is going to be alright.’ ‘Disabled’ Tracy says through some sobs. ‘There is nothing that boy is not going to do’ I say. And then all I can do is say things like ‘come on, come on now’ and say them over and over again. The word stung me to, I will admit it. But there’s something far too horrifying for Tracy about it all. And it’s tipped her over the edge. She calms after a time but the horror of that word hasn’t left her. We are accepting George’s condition slowly but the magnitude of its relentlessness and it’s permanence it’s just starting to smash us over the head.