Home time

The few times now that Tracy has managed to sleep in our bed may have helped her a little but she is still falling apart physically. We were put in an ‘isolation room’ when a bug swept the ward. This meant that we stayed together in the hospital. Sleeping head to toe on a tiny skinny couch after some special pleading with a friendly nurse. She advised against it. And I have to say she was probably right. I did not sleep a wink. But I had the warmth and comfort of knowing that I was with my family. There have been many times when we thought we would have gone home. When we departed Intensive Care, they seemed to think we may make it home in three or four days. As soon we learned ‘all there is to learn’. And that was another reason for us being such geeky keen students. We wanted to get our boy home. Over a ‘finishing line’ of sorts. There was the wait for the MODY test. And then there was the wait for the results. Each night has sapped away at our strength and resolve. George doesn’t seem to mind that much at all. He has these wonderful nurses and doctors smiling at him every day. As I’ve mentioned, George is a lot like his Dad. None more so than his love for the outdoors. He has always suffered from cabin fever. I love nothing more than to watch his imagination let loose as every toy becomes an avatar for him to project whatever scenario he wants to dream. It’s in his response to danger (a little too care free) it’s in his response to people and most of all it’s in his love of being outside. He loves nothing more than running around in a patch of green space. And I have always been the same. Tracy is almost frightened of going outdoors, so much that I tease her about it. But I want to get George out in the air again. Not just for an hour or two or the briefest of day trips. I want to take him out into the world again.

After the failed test I talk to Dr.Hulse about possible time predictions for us leaving. They still don’t have very good control on George’s numbers. His sensitivity to insulin is making things very tricky. He will climb very high and then even the tiniest dose of insulin is sending him spiraling dangerously low. The biggest worry is through the night. We are currently testing him every one to two hours at the very least. And I think the doctors are worried about how we will cope when we get home. Tony asks me how confident we feel about caring for him at home and I tell him that we are ready. I am sure of it. He tells me that we will stay for one more night, possibly two. Just to get the night levels more steady. We have another discussion about the insulin pump and it appears that it is the only real option for gaining any kind of control over George’s blood sugar levels. The hospital applies for funding immediately but we may be dealing with injections for a month or two yet.

I tell Tracy the news that we are to be home in two nights. And she is elated. And this time I think it’s true. We have been told that it would be ‘a few days’ for nearly two weeks now. It’s not anyone’s fault- It’s just that George’s levels are incredibly difficult to manage. Mums are gatherers, home makers. That can be as sexist as you want it to be but I think that has never changed. Gatherers are the ones who matter in this modern world. The ‘hunters’ have become obsolete. Another reason men don’t have a bloody clue what to do with themselves other than run round fields chasing various balls. We live where I grew up as a child. I was reluctant to make the move to begin with, as it felt a little odd to return from central London to my suburban home town. But it was a nice flat, living above the wonderful Carolyn and Tracy loved it. So it was decided. The truth was that I could live anywhere really. It doesn’t matter too much. As long as there is a bit of green nearby to run around. And the place has a shower. That’s about it. But home really matters for Tracy. And where we live works because of her. She wants George back in that home. It struck me when we moved up to the ward that she did everything she could to make a little home of our tiny bay. She wasn’t doing this for her own selfish reasons, or just to make herself comfortable. She was doing it for George. Scattering his toys around his cot, ordering his nappies and his milk and his food pouches. Everything she did was to make him relax and find comfort. And she does this all of the time. Every day. She is the leader of this family. And she wants to lead us all home.

Three days later and we are still in hospital. Anna comes to visit us. When she walks into the room I feel an instant sense of safety and calm. She wants to take Tracy away for a coffee and it feels like a good opportunity for me to leave them alone. I disappear off to gather some food and drinks for us all while Tracy takes George and Anna down two floors into a cafe. When I return Tracy is in a panic. She has injected George with the long lasting insulin (Levimir) when she was supposed to administer the short acting (Humilin). She cannot believe what she’s done and is beside herself. I rush up to the nurse to tell her what has happened and we will have to get some food/sugar into George very quickly. Tracy feels as though this will show us as incompetent and not capable of taking our son home but it has only happened because she is exhausted. I take the nurse to one side and explain why this may have happened. I blame myself for not being there at 10am when the injection had to happen. We had both been administering the injections for some time and it wasn’t proving too difficult, we were growing in confidence. But it was such an easy mistake to make. The needles look identical; the only difference was the colour of the cases in which they were kept. I tell Tracy I almost did exactly the same thing the day before but this doesn’t seem to help her much.

George is okay. We manage his sugar levels but they are a little all over the place for the rest of that day. I talk to Barbara about us going home and she says she knows only very little about it. I tell her that I know we can look after our son and that we need to get him home. I tell her that being in hospital is killing my wife and explain that we would never have made the mistake with the needles if we had only had a tiny bit more sleep. Barbara promises to talk to Tony. We need to make decisions about who will continue the care of George once we leave. I don’t know what she means at first but it becomes apparent that they are expecting us to want to be cared for by our local hospital, Kingston. This idea horrifies me. How could I turn my back on all of these people who had done so much for my son? It would feel like a disgusting and callous act of disloyalty. It would feel like cheating.

Tracy is more practical and we have a sensible discussion about the commute into London for George’s appointments. As soon as we learn that we will only come in every other week the decision is made. Its round about this time when it dawns on me why Tracy and I were so dismissive of the notion that George might have diabetes. There was the initial feeling that diabetes just sounded a little too ‘every day’ for the drama of George’s hospitalisation. And there was also the lack of any family history and our own ignorance that diabetes was something people only got through their lifestyle choices. The part I am having the most difficulty with is knowing that what George has is ‘for life’. One of the first questions we ask about diabetes is whether or not George will ever grow out of his condition. The answer comes back as a very flat ‘no’. It’s so hard to accept that these visits to the hospital are going to become part of our lives. We will never return to our version of ‘normal’. In the Hollywood film we overcome this brutal illness and find our happiness just as the credits roll on us laughing and running on a sunset lit beach. The permanence of all of this is very crushing to negotiate mentally. A fight to the death? No. It’s not. It’s a fight forever and every day. Very, very daunting.

When we are in hospital I do a lot of thinking about getting home. And I think about saying goodbye to all of the incredible people who have helped us. There is one problem with this and that is that there have been so many of them. I want each and every one of them to know the importance of what they’ve done for us. They’ve completely changed my attitude to the world. I have to up my game now. On every level. I’m not ‘contributing’ and it needs to change. I’m utterly in awe of their compassion, kindness, professionalism, heart, intelligence, empathy. I have so much to say. The nurses work on rotation from day to nights and they also move around the ward. You may have a nurse overseeing the six or eight beds in your bay on night and then she will be down the corridor looking after a different set of patients the next night. We do manage to build relationships with several of them as we are there for a while and they seem to rotate back to us. The trouble with the goodbye is that we won’t see any of them. And when the day comes we are told we will be home that afternoon. They have taken pity on my begging. They have been very reluctant for us to leave without feeling empowered with the necessary knowledge of George’s condition. It will become abundantly clear just why very soon.

We’re told in the morning that we will be leaving that afternoon and Tracy and I are beyond joyful. We hold onto one another for what feels like an age. We’ve been hoping for this day to come for two and half weeks now. It means that George is well again. Except that we know he will never really be ‘well’ again. Tracy and I will disagree on this. She regards him as ‘sick’ and it is how she describes him. I won’t accept that at all. I’ve said from the beginning that there is nothing that George will not do. He has a condition which requires treatment but we will let nothing get in his way. ‘He has an organ that doesn’t work!’ Tracy will say. But I’m not going to back down on this. He is not sick and I will not have him referred to as sick. He must never, ever think that he is at a disadvantage to anyone else. I know that we will both learn our own ways of dealing with George’s ‘condition’ but I won’t budge on this. Tracy does agree with me that George must believe it is just something that will be part of his life. It need not be a negative. We can’t talk about it like that.

I had hoped to say goodbye and, most importantly, thank you, to every last one of them. I like to think that we have been really good at communicating our gratitude to this point but as we leave I do have a heavy feeling in my stomach of an awful lot of unfinished business. They can’t possibly know how much they’ve changed my life. I will never quite look at the world at the same angle and they are responsible for all of that. I know quite early on that I want to do something proper to say thank you. I tell a couple of the nurses that we will have to ‘repay’ them in some way. They smile politely, but also in a manner that makes me realise that they’ve probably heard that a million times and the promises have invariably proved to be hollow. So all I manage to Tony, to Barbara and to Megan is a glassy eyed thank you for all of George’s incredible care. And I tell them how completely overwhelmed we’ve been. And I tell them that George is so lucky to have had them. And that we are too. They looked so surprised to be thanked and pretty embarrassed too. It feels hurried and woefully inadequate for the people who have saved his life. And then cared for him. And cared for us. So I tell them then and there, with glassy eyes that we really want to remain in their care. If they want George, of course. And they do, they really do but they tell us that we should meet our local hospital’s diabetic team. And then they are gone.

The training is one thing but our life has taken a bit of a turn. At least our routine has. George hasn’t really been a sleeping baby since he was born. We’ve tried all number of things to enforce some kind of routine but the best we ever got him to, was waking every three to four hours. And now he has a condition which involves us testing him every two hours at the very least. And all through the night. There are many occasions where I am so worried that I find myself testing him every forty minutes. Occasionally we can test him without waking him but even when that is the case we will often have to treat him. It’s very hard to inject a sleeping child in the thigh with a needle and for them to remain sleeping. It all feels incredibly cruel but we must do it. The first month or so he is home I relish the opportunity to administer his medication. I welcome the responsibility. But we cannot get a hang on his numbers at all. The correct sugar levels for an adult or a child are somewhere between 4.0 and 6.0. George is nowhere near these numbers whilst he is on the injections. He suffers hypos at regular intervals and his numbers regularly climb into the late teens and twenties. We learn very quickly from the doctors that George is very ‘insulin sensitive’, which means tiny amounts of insulin bring his sugar levels shooting down. The trouble with this is that he does still require insulin, and will go flying high if he doesn’t get any. He’s so tiny that there is not a small enough dose to give him.

The hypos are harrowing to witness. In hospital George was kept on the high side and the hypos were few and far between. He was administered an injection each time he went over the danger level of 13.9 and that would bring him down again. But the numbers would swing savagely. And they did a good job of keeping him away from the lows. In fact they never let him near low. It seemed to be something that everyone was desperate to avoid. The trouble is that when George comes home his numbers are all over the place and often dipping towards low. He went into hospital because his levels were dangerously high and it very nearly killed him. But, now we are aware of his condition, it takes him a little while to climb to such a high. The lows can happen very, very quickly. We’ve found he can be a safe number and then be tested half an hour later and be dangerously low. He has his adrenaline shot, should he slip into unconsciousness. It’s kept in the fridge. But it the idea of ever using it terrifies me. The lows are the source of the nightmares, that is for sure.

The highs are extremely distressing. He looks disorientated, slightly manic and in dreadful discomfort. I’m told that his vision is blurry and his co-ordination goes to pot. He will cry frequently and feel very vulnerable. When George is low, he can shake and cry desperately for some glucogel. He will inhale it and then want more and more food. He panics, cries, screams and looks terrified. To witness him shake and look frightened is like having your soul ripped into tiny little pieces. We must get the Glucogel into his system as quickly as we can. This can take a few minutes of awful hysteria, until you see George begin to calm. His breathing will steady, his eyes become clearer and he is, well, George again. And quickly laughing and smiling and being a beautiful young boy. The episodes leave a mark on both Tracy and I. We quickly lose count of the number of times we will turn our faces away and try and hold it in. I am careful never to cry as I know my responsibility. But I am often on the edge or unable to hide the anguish I am feeling. We are always careful to make sure he doesn’t see but it cuts you to the core. Not just witnessing the awful ordeal but its seeing his breathtaking courage through it all. It’s almost funny to think of the number of times one of us will distract him while the other is left to ‘compose themselves’. And the mind can continue to wonder after these episodes. We’re told at the hospital that there are no long term affects for diabetes in kids under the age of ten. It’s only after this period that poor control can lead to very nasty long term damage but that only reassures to a degree. If we were to let George slip into a low too many times then he is force feeding in a panic. He gulps down the glucogel but then will eat a huge amount afterward. And then you have to watch him struggle with burping and wind afterwards. And it’s silly, he’s only a baby, but I do worry about him getting fat like this, I worry about it all the time. He’s a baby for goodness sake! A podgy and very cute one but yet I’m still in a panic about us letting him get too podgy. I constantly find myself looking at the other NCT kids to see if George is too big. I can torture myself for a good long while with these thoughts. You’re desperate to avoid the lows but don’t want to put him through the agony of the highs. To see your child suffering is something I will never ever be able to cope with, I’ve never known pain like it, mental, physical and it consumes your every sense.

He is given his usual long lasting insulin at 10am and then at 10pm and we are reacting with the injections. His night milk will send him high, so we inject him with 0.5 Humilin but this will send him low in a few hours. And we have to catch that and give him more food. This will send him high again. He is a constant yo-yo. I am tired of seeing George suffer. And very, very determined that he should suffer no more. When he is particularly bad I am volunteering to check his blood every hour. Tracy will get up with me sometimes but I am confident of testing him and injecting him alone. In the dark! So I do. Tracy will come with me every other time and she needs me when it is her turn to inject as she does not trust herself to be able to hold his leg still for the needle. I don’t blame her at all. It is a very scary procedure. You try and pin his leg down so the knee is locked and he can’t suddenly kick. Even as a six month old he has a very powerful kick. And then you can imagine a metal needle being broken off in his thigh. And him screaming in agony. And… You get the picture. But I will do it. I want to wake up every time. I want him to see that I’m there for him and that we will stop at nothing to make this as easy as it can for him. Whatever he is going through I want him to see my face and hear my voice. I just want to fight this bloody thing and will give every last bit of me in the battle.

In any case, I cannot sleep. That nightmare is coming back again. I will dream of being asleep in my bed. And then I will have a sudden urge to leap up. I am convinced that I am already too late. I burst through George’s bedroom door and run to him. He is pale white with blue leaking through his skin. His eyes are like burnt out volcanoes. And when I reach down to pick him up he is stiff and cold again. My boy is dead and it is my fault. This nightmare just keeps on coming for me. It still visits me now. Tracy has the exact same one. Some of the details are slightly different but the horror is every bit as large.

So that is what happens when I do drop off. But I’ve always been a light sleeper and Tracy a heavy one. Although her heavy sleeping seems to have receded somewhat since motherhood too. But any slight cough or squeak from George and I am up. Always in a slightly overdramatic fashion I manage to swoop back the duvet and jump into a running start. I pick up some pyjama bottoms from the floor and try and put them on and run at the same time. This nearly always ends with my nose smacking the carpet as I tumble in a gangly heap. I go to his cot. Put a testing strip in the meter. I pin prick his big toe. The blood eeks out. And I put the strip to the blood. It takes a reading. On a five second countdown. And for five seconds your heart will always stop and you are incapable of taking another breath. Very occasionally in these first few months, no action is required. But that is very, very occasionally. Next I will be running for the glucogel. Or holding George down to the floor as I peel back his pyjamas and grasp his thigh. I do a practice squirt of the needle to check that it is working. I squeeze the flesh on his thigh. And then I inject him. And he looks at me. And I count to ten with the needle in his thigh, just as Barbara told me to. And he never, every cries. He never ever makes a sound. He is herculean in his strength and character. And my heart breaks a little every time. I hold him. And try some singing again. And try and settle him. And sometimes he will be asleep for all of half an hour before I am up and testing him again.

I will return to my bed on these lone trips to George’s room. Proud that my wife has slept soundly through all of this. I creep into bed and then she turns to me and says ‘what was his number’. So much for heroism. I know that she is having those nightmares too. I wish I could take them away from her mind. And I wish I could get her to sleep. The two people I love more than I thought it was possible to love anyone are in pain. Day and night. And I am not able to take their pain away. Fatherhood. Husbandhood. Is an incredibly humbling business.

There are moments in life when you seem to be able to step out of yourself and look at your existence for what it really is. Call it perspective. Or clarity. They don’t happen often. Far too much of the time we are too busy running to ever stop and take a look. But everything that we have been through has changed my wife and me. They warned me that having a baby would put a massive strain on our relationship. And my God that was true. But we came through. And we found that we were more joined than ever. And now, through all of the pain, stress and heartache I see our relationship for what it really is. The wonderful thing about Tracy is that I know what she is thinking often before she does. I know how she will respond to almost any situation. I just know her. And she knows me. I don’t lie to her. It’s pointless. She can see it a million miles away. And the same is true of her. And yet. And yet. I still discover something new about her all the time. She still amazes me to tell the truth. Her courage. Her dignity. Her strength. Her goodness. Her honesty. Her heart. Her relentless love. It still surprises me. And watching her become a Mother has been breathtaking. And watching her fight for her son has made me fall in love with her again and again and again. That sounds like something from a Jennifer Aniston film. I do apologise. And is perhaps inaccurate. I’ve always been in love with her. But it has never been about giddiness and excitement and breathlessness. She has grown in me and with me and changed me beyond recognition. The words are less beautiful but there is something so muscular about this love. It’s like being carried on a tidal wave. Your feet are rooted to the core of the earth. You feel that strong. The power of it is with you always. Nothing fleeting, nothing dizzying. I know how unbelievably lucky I am. Before Tracy I never believed any girl had loved me. I didn’t really believe that any girl would. Since I met her I have never felt anything other than loved.

Through our trauma we have come out even closer. We’ve gone to war. And we have our stories. We find them hard to talk about but they are there. We have seen each other crumble and rise again. And somehow we are still standing. And so I am able to step back from this. Look at my life. And know that it is impossible that it will ever be missing Tracy. I am hers forever. If she wants me! There is such power in that clarity. And yet we know that the war isn’t over. There will be more moments where we are on our knees with exhaustion. And irritated. And desperate to lash out. And the only person we will find is each other. But we will forgive one another. And we will go again. I’ve opened up to her a little now as to what was going through my mind in the hospital but I never give her the full truth. This isn’t an exercise in machismo. I know that all relationships should be open and we should share everything. But in hospital needed me to be strong. And she is still not ready to have me ‘unload’ emotionally on her. She is still assimilating just what George is faced with and it isn’t the time. I do talk to her more, but it’s gradual. She asks me when I come back from a long run ‘Do you feel any better now?’ and she isn’t asking about my physical well being. We both know exactly what she’s talking about. She has always known what happens on these runs. I do have dreams where I am without Tracy. And they are frightening. I’m blank and listless and have no idea where I sit in the world.

The trouble with having a baby, or certainly one that is sick, is that it leaves no time for either of you to complain. I’ve noticed that when Tracy or I are sick there is a little bit of sympathy for the stricken party. But this quickly evaporates and is replaced by an impatience for the invalid to recover. And bloody quickly! It’s just too hard to do it all on your own. I can remember how loving and considerate we were to one another when illness struck before George, the cooking, the medicating, the cuddling and tucking in. But now it is pretty simply ‘Get yourself together. Now, please!’ The nature of our split work timetables means that there is no real downtime. We are either working or we are looking after George. There is very little space in between. And though childcare has not been an option for us financially, it is now out of the question with George’s condition. We can’t even let my parents look after him during any time when he may need medicating. It’s far too much to be expecting them to inject their grandchild.

The insulin pump will mean the end of injections but will present a number of other problems. The pump looks a lot like a small mobile phone. It is attached to George by a small drawing pin like needle, with a sticker to keep it in place, around the size of a ten pence piece. There are two of these stickers, one with the needle attached and the other is the connection to the pump. It means that the pump can be removed when he has a bath or when he gets to the age when he needs to run around a lot more or play sport. The needle must be changed every two to three days to make sure the wound doesn’t heal up and stops the insulin getting into the body. The pump is an ingenious device. It delivers insulin to George constantly. And each time we test his blood, the test result is delivered to the pump by Bluetooth. We then type in the number of carbs he is going to eat (eg a petit filous = 6 carbs) and then the pump will work out the appropriate amount of insulin to give him. This changes constantly as he grows. It changes when he gets sick. We log every number, every carb and every dose George receives in our own book. We need to see the patterns to make sure that his numbers are under as much control as they can be. It can change from day to day and week to week just how much insulin he may require at what time of day and what sort of food. It is extremely overwhelming to begin with.

We dreaded going back to the hospital. The emotional scars are so deep that it is very hard to return. Some children reject pumps, it may take some time for his levels to adjust; it may take even longer for us to become literate with the pump. But we manage to be out after two nights. And it’s easier now we have a great relationship with Barbara and Megan and Tony. And George is back in heaven, smiling at nurses all day long. And he’s not dangerously unwell this time. He is cuddled by all of the nurses, they often carry him off down the ward for some exploring. And he loves it. The night I am with him I sleep for five minutes. The boy in the next bed sounds like he is choking to death. An awful noise, guttural, howling, lungs drowning. And when he’s not choking to death, he snores and gurgles like a beast. I get annoyed with the noise and the lack of sleeping after a few hours but quickly remonstrate with myself. It does sound awful, he could be really sick, what sort of an arsehole am I? I veer between annoyed and disgusted with myself all night. In the morning the curtain between our beds is pulled back and this little boy leaps onto his bed and grins at me. He lets out a huge laugh. His Mother sees me and I give her a polite smile. ‘I’m so sorry about the noise; he had his adenoids out and makes a dreadful racquet’ ‘Oh, not at all. Don’t worry’ I laugh at the two foot loon on the bed and feel relieved that his condition is a long way from life threatening. He couldn’t look any more full of life. And I am very grateful that this time, he is not the only one. George springs up in his cot and starts to roar at the little boy. I am knackered but I am definitely a lot more relaxed this time.

When we leave hospital the hard work really begins again. If George picks up a cold it can send his numbers out of control. His blood sugars can rise savagely high or dip frighteningly low. In the early days we are prone to testing him an awful lot. Most people test their child around 8 times a day and a few times in the night, depending on how well they are doing. We are testing him around 28 times a day at the moment. The vigil to keep his numbers steady is mentally exhausting. Different foods cause a different reaction in every child. Giving him something like a banana can result in very different reactions depending on the ripeness of the fruit. We begin to learn more about food but calculating how many carbs are in a portion of a cooked meal can be very tricky. I make a lasagne for George. It involves looking up the carb content of red onions, mushrooms, carrots, passata, tomato puree, beef mince, whole milk, and flour and egg lasagne. I then have to weigh each ingredient and do some maths. I then weigh the whole dish and portion it into around fifteen servings. And then some more maths. Tracy is constantly cooking him vegan and separating them into ice cube holders. We can tell you the exact carb content of one ice cube of broccoli! This is what is required for every meal. George hasn’t been eating solid food for very long but now he needs to do it more and more. Tracy is no longer breast feeding so he lives off a combination of formula milk and Mummy and Daddy’s dodgy maths food. And Mummy and Daddy are both bloody appalling at maths.

I admit that it can be tough to see other parents leave the house with a bag of food and then let their kids loose as and when they need. It looks like a very carefree existence. When we leave the house, we have to go through an extremely thorough check list. We also need to make sure we have a number of options for George to eat. Kids are fussy buggers at the best of times and though George is pretty good, he can suddenly decide to turn up his nose at even his favourite food. Tracy struggles the most with taking George out. People stare an awful lot at the pump. A lot of people make very clumsy remarks. And most Mum’s can’t help themselves but enquire. It happens more to Tracy as she is at the playgroups with George in the daytime and also because people don’t speak to men in the same way. Most people wouldn’t dare to ask me. Which is a shame; I don’t mind talking about it. I want to be as open as I can and I think it’s good if I can explain a little about it. I can be a bit militant about the difference between Type 1 and Type 2 but I haven’t terrified anyone too much yet. Tracy has to deal with the NCT ‘do’s’ where the other Mum’s are letting their kids eat what they want off the floor. She has to take George next door, if he were to eat a piece of cake without her seeing then he could be in some serious difficulties. Even if he eats something and she did see but didn’t know the carb count, the repercussions can be awful. It’s painful when you start to consider the emotional implications of George being ‘left out’ of anything in any way. That hurts terribly. The other NCT Mum’s don’t really understand the severity of his condition, none of them mean any ill will and we have to remember how little we knew but it is very rough on her. Susie has been wonderful and even came to see us with her adorable boy, and George’s best friend, Charlie, in hospital. And she actively tries to understand all that we’re going through but it’s so tough to explain all the little things that have to be considered with George. Sam also makes real efforts to understand what’s required for George. It means so much when someone reaches out in this way. Sam’s son even did a sponsored run with George to raise money for the Evelina. All Mum’s are incredibly busy and have quite enough worries all of their own, these gestures are so beautifully compassionate, the effects on us are enormous.

In time many of the Mum’s were baking and ingredient counting, extraordinary and heart melting for us. They are incredibly supportive. But the early days were very difficult. I ask Trace if she talks to the other Mums about it but I think it’s too much for her. She has a sense of anger about what George has been through, it feels like an injustice, she just hasn’t had any time to assimilate. And Tracy looks at all these other babies, all the same age and can’t help but wonder ‘why our son?’ It’s a thought that has come to me only once ‘What if?’ but I can’t linger there. It’s so destructive to think about him not having this condition. It is a very slow torture. I do struggle with the sight of the set attached to his bottom. There are many times when I want to rip the pump off. And seeing his bum without any needles or a wire hanging out does make me very happy for a brief moment but I can’t allow myself to be unhappy about all this. George is the one who has to live with it and we can’t make it seem anything other than utterly normal.

It’s the schedule that begins to beat me. The fact that my work can shift and move. Winter means that babies have coughs or colds or running noses pretty much permanently. So this means permanent struggle with George’s numbers. My finances are looking awful after our hospital stay. The two months afterwards turned me into George’s full time carer. Every day that went by without me writing felt like a massive failure and the stress of not earning was crippling. There is one particular day when George wakes every other hour through the night. He is high, far too high. We begin by trying to offer him insulin through the pump but it doesn’t work. We test him for ketones and he is at a dangerous level, we are supposed to take him to A&E now. We can’t face the prospect of hospital and we’re both sure we can bring him down. We change his set at around 3am and then wake to test him again an hour later. This time he’s coming down towards a safer level of ketones. But this pattern continues throughout the day. I go into our bedroom to do some work around mid morning but he starts to wail and howl, such is his discomfort. He is much happier when I am there so I end up holding him as we watch around ten episodes of ‘Fireman Sam’ back to back. We get his numbers down enough for him to fall asleep. I manage to work for forty minutes but then he wakes number dangerously high. Now Tracy has to go to work. I’ve worked less than an hour and half. I feel like I am no longer a writer. I haven’t finished a piece of work for over four months and am not earning. Tracy kisses me and leaves. We haven’t spoken a word to each other which isn’t directly related to George and his numbers in what feels like months. And when she returns home at nine fifteen I have just put him to bed. And I’m so tired now. We both are. She is in long enough to eat something and we are both in bed. Not before a twenty minute de-brief on his numbers and a resolution from me to wake and test him in two hours.

This is our lives for what feels like a very long time. I’m stealing in moments where I can work, where I can train. And being with George is very, very tough right now. It’s an incredible stress to be alone with him, documenting every number, calculating each meal, treating him, comforting him. There is no release from all of this. And it is all down to Tracy and I. We haven’t laughed or even smiled in what feels like an age. Far from living, we are just about keeping our heads above water, just; the treading water is starting to take its toll. We receive guidance from the hospital but it’s not always easy to reach anyone on the phone. Much of the contact is through email so we are often making decisions on our own. I feel a personal responsibility each time his number are poor. My son is suffering and I will do anything, ANYTHING to ease that suffering, fuck work, fuck money and fuck sleep. It means that we probably test him too often. Everyone has a spike in their sugar levels as soon as they eat, and we all dip a little when we have gone long periods without eating. But his numbers seem to be so poor.

George is sick for an entire week, vomiting, temperature, the full works. I have to be there to help him and ease his anxiety while he’s struggling. He is really suffering. I manage to work in twenty minute bursts when he falls asleep but manage little more. He is well enough for Tracy to be on her own with him for an hour and I begin to find some rhythm to my writing. I’ve almost been too desperate to get things done since we’ve been home. I have a commission which I’m desperate to deliver the second draft of in two weeks. But I have had so little time and am so exhausted that I have no real judgement as to how good the work is. It feels wonderful to finally feel that release that comes with a burst of good work. And then Tracy has to go to work. I need to take over with George. This happens again and again and I feel a massive amount of frustration. I can’t get angry with anyone about it, these are our circumstances, it’s nobody’s fault. But the week is just an explosion of all of the frustration and limitations we’ve felt since we’ve been home. I want to shout and scream all of the time but I can’t do it. And poor George is suffering. And Tracy has not let her feet touch the ground. She comes home at the end of the week to find me staring into space. She tries to get my attention several times before I realise that she’s there. She tells me that I look utterly miserable. I tell her that I’m okay. But I’m not. And she’s right. This relentless and punishing lifestyle is joyless, suffocating, arduous and often very, very painful.

I can’t lift my spirits at all. And it doesn’t seem that I’m capable of lifting Tracy’s either. This is as bleak as I can ever remember feeling. George is tough as can be and despite all of his bugs, puking and snotting, he manages to look happy almost all of the time. Thank God for George. I don’t know whether or not to share my state of mind with Tracy. I know that she is probably feeling the same way too. So we do talk a little but there is nothing that either of us can do. We just have to hang in there for now. I keep telling her that ‘things will get easier’ but I don’t really know this for sure. His numbers should get easier to manage as we gain more and more knowledge. They should get easier as he grows bigger and becomes less insulin sensitive. It should get easier when he is able to communicate more and tell us how he is feeling. But right now it feels as if we are both really swimming against the tide. I think of how I vowed never to stop being romantic with my wife, never to stop making time for her or appreciating her. It’s a laughable concept at the moment; there is no chance we could leave George for a second in his current condition. Every minute and second we have, is for him. We will have to wait.

It doesn’t get any better. The lack of control we have is crippling in every sense. And I keep trying to tell myself that things will get better, the same as I’ve been telling Tracy for some time now. But it’s so difficult to imagine how. Or when. Tracy comes in again from work to complete silence. A quick de-brief as to how George has been plunges us both into the world of ‘non talking’. We are sat next to one another on the sofa, watching but not watching the TV, both lost in our own worlds of grief and misery. Neither of us feels there is any point in complaining. What on earth good will that do? But I honestly cannot go on like this. I have never known misery like it. And I am unable to endure, there’s no one else I can turn to. I can only share this with Tracy in the hope she understands. I promised myself I wouldn’t ‘unload’ on her. I told myself it was not the manly thing to do. So now I am confessing I suppose. I am not a man at all. I’m weak and pathetic and this has beaten me.

It takes me a good ten minutes of thinking about saying the words before they actually spill from my mouth

‘I can’t handle it….I just can’t anymore. Can’t take it.’

At first Tracy just doesn’t say anything. But after what feels like minutes she says,

‘I know’

And she means that ‘she’ knows. Because she is living the very same nightmare.

‘There’s nothing we can do’

She says. And she’s right. This is our reality. We have to accept it.

‘I can’t go on like this though. I just can’t do it’

And I feel completely pathetic. No better for unloading. In fact I hate myself as soon as I’ve said the words. What was I hoping to achieve? Surely I would only burden Tracy even more? Why can’t I just shut the fuck up and get on with it like a real man would?

We talk long that night. And it’s very bleak. We are both terribly unhappy and feeling defeated. I have finally declared that I am weak. Laid it all out in front of my wife. Is this a selfish declaration? What on earth am I doing unloading on her? But she unloads on me right back. And I’m so glad that she does. Finally we both talk about everything that is hurting, all the pain and the struggle. And it’s as awful as it sounds. But the conversation ends with me trying to rally us. Trying to convince Tracy that things will change and that they will get easier. We are suddenly united as a team once more. We thought we already were. And we were to a degree. A sort of ‘tag team’, merely passing the baton from one to the other. But suddenly we are returning. And we aren’t sitting in silence anymore, desperately trying not to engage with or touch one another. Now we are clinging on to each other. And now I can feel strength again. And hope. I feel like I can go on. With Tracy I feel like I can do anything in fact. Her face softens. And I can hear her breath out as she grabs on to me tightly. I feel the stress pouring out of her body. I don’t want to let go

I have quite a few conversations with Megan at the hospital with regards to George’s numbers and she passes me on to Dr.Hulse. It’s Christmas Eve now and I’m so worried about not being able to reach anyone over the next few days while my son is having hypo upon hypo. Dr.Hulse is wonderful with me. Incredibly considerate and offers a lot of advice on how to handle George’s fluctuations. ‘Do you have my mobile number?’ he asks. I don’t. So he gives it to me. ‘Any problems like this tomorrow, or any other day and you can ring me and we can go through it all’. I can’t quite believe this. ‘Are you sure?’ I say. ‘Absolutely. Anything. And anytime. You will be able to reach me.’ I’m stressed out of my mind. And unhappy as I can remember being. My wife and I are like co-carers; we aren’t parents anymore and are a long way from being a married couple. We don’t have time for each other. And it has felt relentless, vicious and unremitting. And this man is a consultant; God only knows how many patients are under his care. And it’s Christmas day tomorrow and he is telling me to ring him if I should ever need help. It’s the kindness of people that always gets to me. I am feeling as low as I could possibly be, feeling like a failure as a parent, a husband a father and a carer. And he is helping me. Did I remember to tell you how incredible these people are?

Christmas does bring some release. And it’s all the more magical to spoil a baby at Christmas time. And I’m not panicking about my stagnant writing and Tracy is not working for a whole week. And we laugh a lot. And have fun. And feel like a proper family. And remarkably, we start to get a bit more of a hang on George’s numbers. It’s a great week. George even sleeps a little and Tracy and I are able to talk to one another quite a lot. It’s been quite a mission to even be able to get out to buy one another presents, but we have managed it. George is spoiled quite outrageously by his cousins, his uncles, aunts and grandparents. Being around them at Christmas time is heavenly. There is so much love in the room, that feeling of safety and this time it’s all added to by the fact that George is still with us. It’s something that I questioned for some time but I know that all of my family have been through their own private agony with it all. It’s great to be able to smile again. Great to be able to be together again. I’ll be honest and say that I never quite look forward to Christmas. But I’m always surprised by how much I enjoy it. I have a natural tendency towards retreating from people and hiding a little. And I always underestimate how good it can feel to be in the company of others, particularly family. I know now that I am at my happiest when surrounded by my nieces and nephews. I’m so happy to get to hang out with them and watch them all grow. I can think of nothing better than being told by my niece that I have just been ‘turned into a newt by her magic ladle/wand’ or being told that I am ‘not allowed to tread on the carpet as there is a shark on the loose’. I love these talks, love their appalling attempts to hide when we play ‘hide and seek’, seemingly so terrified by the idea of not being found that they feel compelled to leap out and shout ‘BeeBo!’ before you’ve even counted to ten.

One of the things that has startled me the most about being a parent is when I go and get my boy from his bedroom in the morning. I can start the day grumpy, vacant, distracted, stressed, anxious, but George has only one mood set in the early morning. He is delighted to be alive. I can’t recall going to get him and not being greeted by the most enormous and joyful of grins. Why not start the day like this? I ask myself. Today is a new day after all. It’s all possible. His mood his incredibly infectious and I snap out of my varying degrees of melancholy very quickly. It’s the same thing hanging out with his cousins. Even when they are upset or sick, they can be so quick to turn it all around and be having the best time of their lives. Kids are practicing Buddhists, none of them have a clue about the past and they have zero concept of the future, they are constantly living in the present. I could learn so much from this. Being around them at Christmas lifts us all. I’ll be honest when I say that this is one of the things that I thought of when coming up with my ‘list of things my son will never see or do’ at the worst point in the hospital. I know Tracy was feeling the same thing because every time I look at her this Christmas she has wet eyes behind her smile. We look at one another and don’t have to say a word. A good cuddle and a giggle will do. They are the greatest of days, lots of running around and behaving like a silly little boy. Heaven. George teaches us something every day about life. I never thought my hero would be an eight month old boy. But he is. He has faced tremendous challenge already in his life. And he just ploughs through, battering each obstacle into the ground. And he does it all with a smile. We, as his parents, are going to face some huge challenges of our own. And maybe it’s only just begun. This condition is relentless. But ‘come and have a go if you think you’re hard enough’ frankly. George has made us stronger than we ever thought possible. We’re so lucky to have him. So lucky. Beautiful boy. Beautiful boy!