Four years and counting

I wonder where she is? The reason I ask is that I feel her presence less often and less strongly as time goes by. I wonder if she's subject to time? Does she feel the minutes tick by as I do? Is she waiting to be with me, as I am with her? Or is she moving on? Rotating with on wheel of life? Is our world less relevant to her? And if she is subject to time, what does she do with it, I wonder? Kay could never sit still. If she is subject to time, waiting and doing nothing would be hell for her. She can't be in hell, so if she's subject to time, then what does she do?

And if she's not subject to time, I wonder how she percieves me? Does she see across all time? Can she wind backwards and forwards in time following the entire course of my life? Or does time run differently for her?

I wish I knew the answers to these questions. I try so hard to picture where she is now, what she is doing. Does she watch over me all the time? Or does she do other things? Can she watch over all of us concurrently? Or can she miss something? The answers to these questions depend of course on whether she is subject to / percieves time.

I dreamt about her a few nights ago. Man, I could hear her laugh so clearly and it lifted my heart out of the greyness that enshrouds it. Such a disappointment when I woke and the recognition that it was a dream crept into my head. Heart thumped back into the colourless emotional wasteland of the bereaved.

Her absence is a emotional black hole in my life that sucks in joy and burns it in a cold flame. I balance on the event horizon. It would be so easy to let that black hole swallow me up. Give in, let grief, misery and loss dominate. Stop caring. Become self indulgent.

On the other side of the event horizon is a normal life, a richer life, where its still possible to laugh and have fun. To be carefree. To live beyond oneself. But it's massively hard to even contemplate, or remember, when the black hole has its claws in you, when you struggle on the event horizon.

But lately flashes of light have beaten the darkness back here and there. Lauren going to University. Nattie going to high school. Enjoying the excitement of their new worlds. My girls make me smile and that's priceless.

Still, their happiness makes me wonder about Kay. I wonder how school would be going? Would she be in the top hockey team? How tall would she be? How many additional grey hairs would she cause?  And I wonder where she would be now?

Three years later

For the third time we're confronted with the anniversary of Kay's death and everything is still so raw, so painful. The ache in my heart and my longing to hold her again has not diminished one iota. I still have an almost physical memory of holding her, her arms around my neck, her legs around my hips, my arms supporting her, my face in her hair. I can still remember wondering how such a beautiful creature could be a child of mine. 

The world in which we live still seems to be a dark and terrible place, with some pools of light here and there. Lauren is one, Natasha the other. However the tone of life has changed. A sense of loss pervades everything. One can have a great holiday, but the fabric of the holiday, of one's memories, holds a feeling that things aren't right, that the joy one felt on holiday is compromised, corrupted, impure. 

These days it feels to me that behind the light there's always darkness. That light is transient and darkness rules. For the first time in my life I am almost fearful of the coming winter, of the return to short days and long nights. During the last weeks I have been almost desperate to soak up as much sun as possible, sitting outside whenever the weather has allowed until the light has all but gone from the sky. Perhaps it's because I've been sleeping so badly for so long now, that I've spent so many nights awake wrestling with my worries, beset by memories, that I've become almost fearful of the night. I can almost sleep more restfully during the day, when the light keeps the demons away. 

Looking back over the years I still have the sense that somewhere along the way I've somehow triggered fate's immune system. What other explanation can there be for all that we have suffered and lost? For the pain that we continue to experience? Random chance just does not seem to cover it. But then, if I turn down the self-indulgence for a bit and look around me, I see so many friends also struggling with insurmountable problems. A good friend in France with an undiagnosed and yet extremely debilitating disease. A young acquaintance with ALS. People struggling with their work in the most difficult times. What's happened to the world? When did it become so hostile?

A long time ago, I wrote on this blog that I felt that I'd slipped through into a parallel and much nastier dimension, that this 'slip' happened on a flight back from India in October 2009. Now, almost four years later, I still have exactly the same feeling. Sure, it's probably just a perception, but it really doesn't feel like it. Looking back it feels like a line in my life, a before-and-after moment. Before: a largely happy family, carrying its own cross, sure. But a cross that was no bigger and no smaller than anyone else's and that was in proportion to, in balance with the joys of life. Smiles that come naturally. A kind of happiness that's so implicit, no-one knows its there. After: a terrible and ultimately fatal battle to save the life of a deeply loved and dear child. A family scarred by loss, relationships strained to breaking point. Gloom and depression. A life into which one must pour energy just to get through the day. Happiness a transient moment that can no longer be assumed.

As I write this, I'm censoring the worst of my thoughts because what I've written already seems incredibly self-indulgent and down right bloody miserable. By now I guess that anyone reading this will be on the way to checking out. So, I'll close this line of rambling by saying that in the gloom of the night, at 3am when the demons are out and howling around my head, it all seems to me to be much worse than this.

Instead, I'll attempt to turn it around and look at the positive things. Firstly, we're all still here and, battered and bruised as they may be, relationships are still intact. Secondly, we're still surrounded by lovely people, friends and family, who care. It's a shame that it's not normal to go around letting your friends know how deeply you care for them and appreciate the support you get from them. I still see in my mind's eye our friends streaming into the house after Kay died and receiving deep, deep hugs from people who I didn't know could hug! Sometimes I wish that we treated each other like that everyday. What else? I don't know. Difficult day to be thinking about the positive. 

I still have the feeling that I'm connected to Kay, behind and above my right ear. It still feels as if Kay's got her hand pressed lightly onto my head. But I don't have as much sense of her presence as before. She feels more distant to me - which generates a horrible feeling of desperation in my heart when I think about it. I still talk to her in my head. Practically every day, when I look at her picture on the wall and kiss her goodnight or good morning, I plead with her to help me, to lend me the strength to get through the day, to face a life that has had so much ripped out of it and that seems so compromised. 

Unfortunately I don't think she can help me. I certainly don't have the sense that for all my entreating with her, that my fate has changed in anyway. I guess that the rules of her world are that we mortals have to get on with our own fate. To be honest, sometimes I feel a bit angry with her that she doesn't seem to be helping. Stupid feeling, I know. But I'm doing my utter best on all fronts and even a little bit of luck here and there would help enormously, even if it was just a mental boost. 

I guess it's time to wrap up here. Time to get on my bike, get out in the sun and see if I can find Kay somewhere on the way - as happened after she died. I long to curl up in her arms, I long for someone to take away the burdens I carry, even if it's just for a little while, just long enough for me to get some deep, restful sleep. 

I'm so very, very tired.

 

A Dream...

I was walking through a crowded department store, holding a four year old Kay's hand. For some reason we were hurrying to meet Leonie. Kay said something to me, which I didn't quite catch. So I looked down at her and said, "What did you say, Kay?". She looked up at me in that concerned way that she has and said, "Are you happy, Daddy?"

I woke instantly. It was so real. I could still feel the imprint of her hand in mine. Her way of talking, of looking, her deep concern, the seriousness that she sometimes had even as a four year old, the care and concern that she had for others...    

I burst into tears and woke Marion up. I'm now sitting downstairs writing this with tears streaming down my face. Hanging on to this painful dream is more than I can bear. But I can't bear letting it go either, as it's the most recent "real" memory I have of Kay. Accurate in every detail. As if this happened yesterday. 

No, Kay, I'm not happy. I miss you and sometimes I just can't bear living this life without you. It doesn't matter how hard I try, the hole you have left behind cannot be ignored, it cannot be filled, it cannot be coped with. It's just there, every day, every minute of every day, a yawning chasm in my life where there used to be a person of such warmth, such joy. I person that I love so very very much.

No, Kay, I'm not happy at all.

The worst thing that could happen to me

My mind is still filled with confusion over so many things. But during the last days I have found myself thinking over and again how the loss of one of my children, the loss of Kay, is truly the worst possible thing that could have happened to me. I don't mean this in some impersonal, philosophical way. I mean it in a personal, crushing, full-of-individual-meaning way.

Perhaps without realising it, I have always seen myself as a father, looked forward to being a father, enjoyed every second of being a father. In an implicit way, being a father has been my life's mission. Indeed, there have been many other things that have filled my life with meaning, such as running a business or flying, and there have been times when these things were in the foreground, when I would have told you that they were fundamental to my life. But when I look back, it's always been my kids who have meant everything to me.

When Lauren was a born I wanted to be involved right from the start, as if she were some new gadget that had been given to my wife. I bathed her, cleaned her, baby-sat her, looked after her when she was ill and played with her. I read the "Secret Life of the Unborn Child", I followed her development with fascinated, experimentally based interest and, when her mother walked out of the door and left us, I went from working 50 hours a week to 24 and completely turned my life upside-down to put Lauren at the centre of it. I fought tooth and nail to retain custody of Lauren in the divorce that followed and, in the end, I did. 

Kay was born with a milk allergy which left her constantly screaming with tummy cramps. But it was about 5 months or so before we got that problem under control. In the meantime, when I came home from work, Marion would dump Kay into my arms and say, "Now it's your turn" and I would spend the rest of the evening and my share of the night massaging Kay's tummy and cuddling her to sleep. Then we found that Kay had a hip deformity which meant that her legs had to be kept in a special harness for six months or more. And then she got a nasty skin infection which was more or less the precursor to leukaemia. 

In a way I never really minded all of these things - I was looking after my kids and there's nothing more satisfying than that. Of course, there was tension and worry and fear and all the usual standard operating concerns that such problems bring. But I never felt that I should have been doing something else, that I was being cheated out of MY life. Through all of this I knew that there's no higher calling than looking after your children.

(I will note here that I've not mentioned Natasha. That's because Natasha, from the moment she was born, has not caused us a single problem. She was the perfect baby, born to a family in leukaemia crisis. She slept through the night, almost from day one, and ever since she has never needed more than her fair share of attention and has frequently got on for long periods with much less than her fair share.)

In the course of the years people have said to me that they see me as a natural father. I couldn't comment, except to say that that doesn't seem to be much of a challenge - to my mind anyone can be a 'natural father', it's simply a question of love and applied learning. But looking back now, perhaps I can see what they mean: I love kids and I especially love MY kids and NOTHING, not one single thing, could be worse than losing one of them. 

What they don't tell you about getting older is that your options shrink, that your life becomes cast in concrete and at some point you have to give up and simply accept what you have got. My life has become a fabric of responsibilities, commitments, dependencies and obligations to such an extent that there is no room left for alternatives without shattering that fabric. I despise people who fail to honour the fabric of their lives, who shatter that fabric for selfish ends. 

I look at the mess that my life has become and some part of me yearns to do it all over again and to do it right this time. But I cannot become what I so despise and so I have to learn to accept that THIS IS IT. There's no going back, there's no changing facts, there are no viable alternatives. My family is broken, we're missing 20% of our substance and nothing will ever change that fact. 

The worst thing that could happen to me, has happened to me and there is no escape.

Two years is no better than one year

Two years ago today the world fell apart and it's showing no sign of mending. My heart is just as broken now as then. I still keep hoping that this is some kind of nightmare from which I'll wake up. But alas. 

The first half of the day, and in fact the whole of this week leading up today, has been dreadful for a host of reasons that I can't explain here. It feels like some kind of awful conspiracy has been taking place, designed to metaphorically stick knives into the most raw, painful and unhappy areas of my psyche. The result is that I'm sat here feeling utterly bereft of Kay, bereft of happiness, bereft of any simulacrum of quality-of-life. 

On Monday we had an appointment at the Radbout Hospital in Nijmegen. The appointment was with Esther, the psychologist who supported us during Kay's sickness, and took us back to the very place where Kay died. It was an incredibly difficult thing to walk those corridors again, to think that the last time I took those lifts was to leave the hospital without Kay. I was beset by memories, many of which I'd rather forget. (Why is it that I have so many memories of Kay-the-patient and so few of Kay-the-healthy-child?). I remember so clearly talking with Esther in the ICU about Kay's potential death and more or less begging her not to let us become The-Family-Who-Lost-A-Child. And yet here we are, The-Family-Who-Lost-A-Child and it's even worse that I could possibly have imagined.

I'm sat here with tears flowing down my face, almost unable to write at all. The sea of churning emotions inside me no longer lends itself to written expression. There is so much confusion, so much pain, so many things that cannot possibly be aired for the sake of making things worse. My goal is to maintain the status-quo and that is hard enough. Don't even think about trying to make things better. "Talk to someone", I hear you say. Been there, done that. I think that I was starting to make my psychologist depressed - how very Woody Allen. All the "easy" stuff has been dealt with, EMDR for post-traumatic shock and memories and plenty of therapy for all the first degree psychological consequences of Kay's death. It's no longer these things that trouble me most. What troubles me are the "Why's?" and the implications of the "Why's?", specifically the implications of the fact that there are so many of them and they all remain unanswered. For example, why out of 356 days per year did what happened this morning have to happen this morning? Today, of all days! 

When I look at the pattern of events over the last years it almost seems to be proof of the existence of malevolence, a malevolence that focussed on us in October 2009 and is still acting on our lives today. Maybe one day I'll understand better what is going on, but at the moment I feel like a prisoner being tortured on the rack, unable to comprehend the questions being asked because of the pain and therefore unable to alleviate the pain.

But "Why's?" are not the only problems. Trying to maintain the status-quo is extremely hard, especially when I spend half my time wondering whether it would just be better to let everything fall to bits completely and start all over again. What is it about this life that makes it worth fighting for? It is a life riddled with pain, with sadness, with loss. Trying to keep it all together is so very hard. Part of the answer is that letting it fall apart would cause even more pain and more loss for those involved. Part of it is that there is still much of value in it. Yet another part is that I'm a fighter and I don't like losing and giving up is losing. So the choice is to either fight on to merely maintain a horrible status-quo in the vague hope that things will get better or to bin everything and gamble that what is other the other side is better, bearing in mind that generally it's a fiction that the grass is always greener... So far the fighter side of me refuses to give up and keeps bouncing back. I just hope that somewhere in the near future the malevolence turns its attention to other things.

I have to say a word for those of you who know me personally. All of this stuff that I have written about is going on more or less constantly and, like a nuclear reactor, requires careful, thick-walled containment. It is this containment that allows me to operate from day to day. But thick walls do have their disadvantages in that I can often strike people has being distant or indifferent to otherwise important things or that I can react strangely to certain events. Even Marion sometimes accuses me of being indifferent to topics that she finds essentially important. I can assure you that I'm very rarely indifferent. My seeming indifference actually has its roots in the opposite: that many things touch me deeply and strain the walls of containment, such that I must mentally stabilise them in order not to "go critical". A friend and colleague of mine recently experienced a day when my containment failed - I was tired, ill and very depressed - and I think he was quite shocked at what came out. These last years I have had to wrestle with near constant emotional overload and as a result my walls have become thicker and higher. Thus, if I sometimes seem indifferent or react strangely, please forgive me. I'm trying to maintain normal operations under continuing abnormal circumstances and it's sometimes not easy.

Finally, my thoughts return to Kay. I've mentioned in the past that I feel a connection with her in my head, just above and behind my right ear - it's almost as if her hand is sometimes pressing lightly on my skull, but then in my skull. In the last months this feeling has softened - it's still there, but more gentle, subtle. This morning, as I walked down the stairs for breakfast, I suddenly realised that it is much sharper, much more pronounced today. Sitting here now, the right side of my head feels completely different then the left side. Kay must be here. But I wish she was sitting on my knee, giving her poor old Dad a big cuddle. 

I miss her so very, incredibly, hugely, infinitely much. 

Happy Birthday, Kay XXXXXXXXXXXX

I miss you so incredibly much. I could feel you snuggling with us in bed, this morning. But it's no substitute for the real thing, the sound of your laugh, the warmth of your body, the smell of your hair.

I love you so very very much, my beautiful girl.

Happy Birthday from your Daddy.

The Fear of Fear Itself

Lauren and I have had a couple of Kitesurfing lessons over the last few days. Great fun, especially because we're doing it together. But this morning I more or less had to drag myself to the second lesson. And during the lesson I found myself looking at my watch to see how long it would be before the lesson was over. And this is not just limited to Kitesurfing. We have brought our Laser 2000 sailboat with us on holiday and I also find myself hesitating to use it in even vaguely challenging circumstances. This afternoon the wind has been very strong, certainly in the "adventurous" range and I didn't really dare to go out on the water. 

I'm not used to feeling like this, at all. Normally, the idea of learning something new, something fun and adventurous would have me bouncing out of bed and counting down the minutes until I could start. Normally, I'd be happy to push the envelope with the Laser, to find out more about sailing it in adventurous conditions, especially in the relatively safe environment of a lake. I've been debating with myself all day about why I feel like this. Why, the truth be told, I seem to have become afraid of anything the involves an element of risk. I would have argued that it's not in my nature to be fearful. Although I have always felt fear when doing stuff like aerobatics or windsurfing, I've always felt that a careful and reasoned approach would lead to minimal risk. And it always seemed to me that if other people could sail or fly in given set of conditions, then given the right training or level of skill and preparation, so could I.

I think that the answer is possibly relatively simple: in the last years I have had no choice but to face the worst fears possible. Not only this, but my fears were realized, the worst thing happened - something that had never happened to me before. While Kay was ill, my careful and rational approach to facing down the mind numbing, body paralyzing, all embracing fear of losing her was in the end no use - I lost her anyway. As I sit here now, writing this, I can feel the residue of that fear still in my system. I can so easily recall the moments when it seemed as if my blood had turned to liquid fear, when my heart seemed to be circulating that fear to every extremity of my system, when if someone had merely clapped their hands I would have broken the record for the 100m sprint. I feel as if I've developed an allergy to being scared, that my very body has now become afraid of fear itself.

If so, this explains a lot. It explains why I've more or less completely lost my interest in flying, why I find it difficult to summon up the will power to take the Laser out. It explains why I find my job more difficult now than 3-4 years ago, why it takes me more energy to face the day. It explains part of why I find it difficult to sleep - I often find myself thinking about all the various things that could go wrong and then I start worrying about them, etc. In summary, it explains why I've become so afraid in general - I've been so throughly beaten up by fear that I'd just rather do anything I can to avoid being faced with it.

Writing about it makes this sound all very obvious and explicit, but in fact it's not. It's actually so subtle that it's taken until now for me to realize that somethings going on, the trigger being finding myself looking at my watch and hoping that the Kitesurf lesson would end before I had to try water-starting again and thinking how strange it is that I feel this way. I suppose that I should consider that this is progress. I don't suppose that a year ago I would have even considered trying Kitesurfing - in fact, I just remembered that that's true, a friend challenged me to try it last September and I backed down. I have to hope that eventually the fear of fear will pass and that I'll be able to return to being "me" again, because I've always considered my readiness to do adventurous things a fundamental part of my nature. 

I continue to be surprised and shocked by the depth and breadth and sheer insidiousness of the consequences of Kay's death and the profound effect that her loss has had on my very nature. I've been saying for quite sometime now that I would like to live a simpler and quieter life. I think that I've just understood a significant component of that desire.

How I miss Kay

I'm missing Kay is very badly at the moment. She's constantly in my mind's eye. I see her hurrying around, hockey stick in one hand, school bag in the other. I so miss her lust for life, her energy and presence. I can smell her hair, feel it brushing on my face. I feel her snuggled up against me, hear her laughing. And I miss her more than ever.

Marion recently wrote that Kay saw everything as a competition. I was amazed and thankful for this observation as it indeed is true and I had forgotten. She spent her life competing in one way or another and she usually won - even if it was occasionally by bending or changing the rules. A friend of Kay's recently also wrote a small piece called "Kay the Boomerang", about how for her Kay keeps coming back. It is a beautiful piece of text and reflects a beautiful thought. And how I wish it were so, that my Kay would come back.

I'm writing this in a public place so I have to curtail my musings before I end up in floods of tears. In a few short months it will be two years since Kay died and I still cannot believe it. Although I'm writing less these days, it's not because I feel less but because I have run out of words to describe the life that I now live. As always, your support and kind thoughts, past and present, remain a source of bouyancy in what otherwise remains a stormy sea.

Perspective

I saw a comment on Facebook the other day: one person posted a funny video and another remarked that they were happy to see this video since they had seen too many miserable posts recently. I have to say that whenever I write a depressed or miserable entry in this blog I always worry that all I'm actually doing is convincing people that I've lost the plot and turned into a complete sat g*t. So I'm going to try and write a counterpoint to my recent depressed and miserable musings, partially to try to convince you, the reader, that I'm not completely off my rocker, but also to try and talk some perspective into myself.

We arrived at 1am this morning in the south of France for a weeks holiday. I'm sitting here now with a fantastic view in bright sunshine, feeling extremely tired, probably since I did most of the driving and also because I've still not shaken off the 'flu bug that took me out last week. In fact for the last hour or two, I've been sitting very still, just "listening" to the tiredness coursing through my mind and body. I really cannot remember when I've ever felt so tired before. It feels like it's "raining" tiredness in my head - there's a sense of it streaming down and around the inside of my skull. I can feel my pulse ringing my brain like a bell and in the teeth of my upper jaw. My eyes are gritty, my vision "glazed", my mind is foggy and feels like it's draped in a damp, grey blanket. There's tension in my chest and I'm very far from being relaxed. The rest of my body feels like it's been lightly beaten all over. Conclusion: I'm absolutely exhausted.

Therefore I suppose that I should not be surprised that I'm depressed and miserable. I think that perhaps one of the biggest changes between the "normal" life I had before Kay died and my life today is that previously being happy and positive was a natural state, it cost zero "mental balance" energy, it just was (and this is why people with "normal" lives often fail to appreciate normality - "normal" costs zero mental balance energy, it just is). Since Kay's death the opposite is true: it seems as if my natural state is now grief-stricken & heartbroken and that to be positive and happy costs energy. Therefore when I get tired, misery and depression get the upper hand. 

I suppose that these two things combine with each other as well, being tired leads to depression and depression saps one's energy, generating tiredness. My feeling is that there's a non-linear relationship involved, like some kind of lift/drag curve (for the pilots among you) where the more tired you get the more rapidly the depression increases and the effort/energy required to overcome the total effect grows rapidly. For me the solution to feeling miserable/depressed is always exercise. Getting out on my bike or getting on the cross-trainer with some loud music always helps me feel better. But the mental effort it takes to drag my ass off the sofa on onto my bike rises dramatically with tiredness/depression. Plus, this kind of tiredness often goes with some kind of physical limitation, e.g. feeling ill or back problems. And guess what? This last week I've had both - 'flu and my back being "difficult" again. Both of these things preclude exercise, which means that currently I remain bathed in my fug of misery and depression. 

There's one other potential avenue of relief: hugs and TLC. But when Lauren's away my source of hugs is halved and the concept of TLC hasn't arrived in our house yet - it's every man for himself around here.

So the perspective that I should have is that dealing with grief is a slow process that involves two steps forward and one, two or three back. I guess that during the last few months there have been a few backward steps. I suppose that this is nothing but normal, seen on the longer term. Unfortunately it's very difficult to live from day to day in these circumstances with only long term perspective as a guiding light. 

There. Was that a less miserable post? Or do I need even more perspective?

Need to write, what to say?

I'm laid up with a bout of 'flu that's knocked me flat for the last 3 days and doesn't seem much better today. It's probably a indication of the fact that I'm physically and mentally extremely run down. The last months have been and remain very difficult. I know that recovering from the loss of Kay was never going to be a linear process, but it feels like I have gone practically back to the beginning. The pain is unbearable, I have been in tears so often recently.

A few weeks ago a colleague rushed into my office, very upset, to say that his daughter had been diagnosed with diabetes and that he had to rush to the hospital to hear more about the subject. This had a dramatic effect on me, I flashed straight back to the two times in my life when I myself had receieved such news - the last time also at work. My instant reaction was "if only Kay had had diabetes". I know that I should probably have put my colleagues situation first, after all his news was no small thing. But I was absolutely blindsided by the flashback, by the scream of desperation and longing that I felt, by the bone deep need to change everything. If only Kay had had diabetes.

I spent the rest of the day struggling with tears, sat at my desk, behind my computer. I couldn't concentrate at all, I just tried unsuccessfully not to cry. When it was time to go home, I got in the car and drove through a veil of tears and when I got home I collapsed on the sofa and sobbed my heart out. I miss her so very much, oh if only I could find the words to do those feelings justice.

Life has been just so difficult these last months, the most difficult period since the weeks before and after Kay died. This time of year is also difficult because it was the time of hope, of the bone marrow transplant, of the days when everything seemed to be going well and the trees turned green while we watched from Kay's window. Now to watch spring set in is to be reminded that all that hope, all that investment we made in believing in a future for Kay, came to nothing. I think that if it wasn't for Lauren and Natasha, I'd be ready to find a different life. If my heart stopped of its own accord, I would welcome the silence. DNR. Organs available.

I suppose that I should really reflect on my own words here and conclude that I'm very depressed and do something about it. Part of the depression is perhaps temporary in that I'm so run down and not well at the moment, I guess. But part seems inescapable - no matter what, I'm doomed to have to carry the loss of Kay with me for the rest of my life and that seems utterly unbearable at the moment. So I'm really not sure what there is left to be done to lift the depression. I've done all the talking to the psychologist that seems helpful. I've burnt the ears off all of my friends. Right now, it seems that nothing has helped, that I'm still bathed in inconsolable, uncontrollable grief.

Even after 18 months I can't believe that she's gone. I still have the feeling that she's just away for a weekend and will walk in the door any minute. This really can't be happening, this really can't be my life. I want to wake up, I want to go back, I want anything that will take this pain and suffering away.

Don't believe everything you read on the Internet

I'm stuck at an awful impasse. My head is bursting with stuff that I need to talk or  write about, as I have done in the past. The problem is that fewer and fewer of these things are about the direct consequences of losing Kay. Increasingly I'm struggling with the indirect consequences, problems and issues that have arisen or are arising as a result of losing Kay and that involve other people or things outside our immediate private lives.


The internet is a wonderful thing and this blog has helped me enormously during the last couple of years. But it's now reached a limit. There are things that one simply cannot blog about if one is not to upset others or make matters worse. The effect of this limit is that really, you can't believe everything you read because stuff that affects other people or that would make things worse is being filtered out. The picture that you're getting is missing information necessary for a complete understanding.


On the other hand, one could argue the contrary: that by respecting the limit, one is forced to take a more balanced approach to sensitive matters and that therefore the picture that is conveyed is more accurate to the underlying nature of the situation. I don't know. All I know is that I'm struggling with a load of things for which I simply have no outlet. 


I dare not go further. 


What I'm learning in general is that the loss of a 10 year old child, the loss of my Kay, has repercussions that last longer and go much deeper than I could possibly imagine. We spent last week in France, at the house where the kids have spent so much time playing and growing up. Where I have taken some of my favorite photos. Where, when Kay was being treated for leukemia the first time around, we used to go because we got so much peace from just being there. 


However things have changed. It's not the same anymore. Kay's absence is much louder there, the clearest change being that Natasha has lost her playmate. Instead of building huts and running around outside with Kay, she now spends more time indoors on the computer, in a book or in her own world. She doesn't seem to mind, but for me its a source of constant pain. 


Last Sunday I was feeling extremely depressed and it occurred to me that my overall happiness peaked during the summer of 2009. We had a couple of lovely weeks at the house and then a week on Elba. I sailed the Laser with the girls across the bay and we lay on the beach at night and watched the August asteroid shower and we were a largely happy family. The girls were all at an age of simplicity and were a delight to behold. I would not have possibly been able to recognize this at the time, we had our share of family problems, but looking back I realize that I took so much enjoyment from all three of my children, without even realizing it.


And so the recognition came last week that I am truly and firstly a father - that's the thing that contributes the most to my "quality of life". Losing Kay means the loss of so much of that quality of life and I cannot possibly imagine a summer in the future where I'm ever likely to be as happy as I was in 2009. Plus, there's all the other shit to which I have alluded, that flows and flows as a consequence. It's a sobering thought to realize that the chances are that most of the happiness in your life is behind you.


On a final note, so far in this process of grief I have largely been spared a sense of regret. But this is now changing. I look back on the last 10 years of my life and think what I complete idiot I have been. Again, I reach the limits of what can be blogged. But suffice it to say that there were moments that I could have made different choices and that I should have made different choices. Yes, I know this is all in the past, but we are ultimately the sum of our actions and too many of mine have been ill-considered.


I may not have been able to do much about the length of Kay's life, but oh how I wish I had "grokked" it more deeply, more slowly instead of running around doing a load of stupid things.

Black Days

I guess that in some ways I'm slowly healing, at least judging from my "need" to write blog entries. However part of the reason that I've not written is that since the start of the year I have been extremely busy with the business and either been too busy or too tired to write. So it's not entirely good news that I'm writing less frequently.


For the last few days though I have started to miss Kay more and more. I know that recovering is a non-linear process, but I seem to be taking a huge hit at the moment. Life seems to weigh so heavily, every breathe an act of will. There seems to be no light at the end of the tunnel and no hope of finding light in the near future. Recovering from the kind of grief that I/we carry is a marathon that one begins without knowing where or when the end will be reached. Right now it's a marathon that I just don't want to run any more. I'd just like to lie down next to the road, give up and sleep. 


I tried to talk to Marion this morning, but the moment I opened my mouth I triggered her grief and I ended up listening to her instead of talking about how I feel. This is understandable, it's been the dynamic in our relationship since Kay died. But right now I could do with someone to lean on myself, a shoulder to cry on. I feel so bad, so hopeless and so incredibly tired of this life.

Wish you were here...

I can't begin to tell you how much I miss you, Kay. These days every beat of my heart carries an echo that reminds me that you're not here, not going to walk in the door, not going to hug me, not going run and jump into my arms. The list of things that I miss is so long that it seems endless, full of sights and sounds and smells and feelings that are no more. I keep thinking that I'm able to deal with losing you. But then there's always something around the corner that makes me realise that I don't think I will ever be able to deal with it, accept it, come to terms with it. My arms ache with the need to hug you.

I know that I loved you as much as I could and I know that you know how much I love you still. But it doesn't seem like enough. I keep thinking of all those moments when I just accepted my family, my children at face value. When I didn't treasure them, 'grok' them, bury my face in them and absorb every atom of joy that they brought to my life. It's so easy to live with the people we love most without truly appreciating them. If I had the chance to go back and re-live the ten years of your life, I would do it slowly. I would savour every moment, treasure every second, inhale every sight, sound, smell and touch. I would bathe myself in the richness of that life. 

But now that richness has been forever diminished. And I will forever feel like a complete fool for not having realised just how lucky I was to have three such varied, beautiful and wonderful children. Now I have just two beautiful and wonderful children and try as I might, the richness of what I still have is tainted by what I have lost.

Kay, my darling. I miss you so so so much. I would move heaven and earth to hold you in my arms again, to hear you laughing, to catch you cheating at Monopoly. This life is worth so much less without you. 

Your loving Daddy, forever.

Health Report

After another sleepiness night I checked in with the GP this morning. Everything seems ok, at least from a physical point of view, BP normal, HR my usual low figure. Doc says that it's pure stress and that the best medicine is sport. I guess that these are the moments that I have to be glad that I don't smoke, don't drink (much), I'm not overweight (much) and that I occasionally get round to being active. Now I just need to recover from a horrible night. My head is buzzing with tiredness and I feel like hell. So what to do?

More on Sleep

I thought that I was winning the sleep problem but yet again I'm sat here at 2:30am, unable to sleep though desperately tired. Last Sunday night was hell, Monday I was exhausted enough to sleep through a world war, Tuesday was again horrible. Wednesday was a little better and since Thursday I've been doing OK - until now, that is.


I talked to our Homeopath on Monday and she suggested stopping some medication that I'd been taking for weeks to get rid of lingering flu symptoms. When I thought about it, this made sense - my sleep problems started shortly after starting this medication. She was fairly sure that my sleep problem was an over effect and thought that within 3 days or so, once the medication was out of my system, I would lose the sleep problem. It seems pretty much that that is what happened.


However another component of the problem is stress, I guess. I've mentioned before that I've been experiencing tension in my chest and that I find that my heart also seems to beat too hard on these occasions (not too fast, but thumps in my chest). The solution to this is exercise. For instance, last week I went on the cross trainer every other day for 30 mins, which had the effect of greatly decreasing the tension in my chest.


It's this problem that's keeping me awake tonight. I guess that this is my fault. Usually I'll do a  30 - 40km trip on my mountain bike in the weekend. I'd planned to take part in an organised ride today but after 2.5km I got a flat tyre and ended up missing the ride. I was so fed up that when I got home, without thinking, I didn't do anything to fill in the gap and so I missed out on my weekend exercise. Earlier this evening I noticed, without really noticing, that I could feel my heart beating. But it was only when I went to bed that I really noticed that it was thumping quite hard. I started to worry then, which only made the situation worse and guess what? Here I am.


I don't know what to do about it now. The problem is that the whole cycle from last week could start to repeat itself. So I need to get on the cross trainer first thing in the morning. But at this rate I'll be exhausted in the morning. 


I used to think that I could absorb stress fairly easily but since Kay became sick I seem to be pretty stress intolerant. Or rather, I think that most of my capacity to absorb stress has been taken up by the loss of Kay and I have very little room left to deal with normal things.


There have been lots of tears in our house in the last few days. Preparations for christmas are bringing our pain to the fore. I bumped into the last photos of Kay yesterday and that has really been hard to take, although I know that like many things, they have to be faced. Marion said today that she still has the feeling that Kay will come running in the door any second and that's a feeling that I share too. Again she's incredibly present by her absence. There's a Kay-shaped hole in my life that is almost tangible. 


I can't find any enthusiasm for christmas, it seems so meaningless. Thinking about gifts for people, it supposedly being a happy time of the year, etc, when my heart feels so empty. The only point of it for me is to make it nice for Lauren and Nattie and to enjoy some good company. I could easily leave the tree, the lights and all the other symbols of something I just don't feel. 


But there's one big highlight in the coming days: Lauren comes home on Wednesday. She was last home at the beginning of September, which seems like an age ago. I can't wait to see her. So I guess that for now I'll try to focus on that and see if I can eventually get some sleep.   

The last photos

Was roaming around my photo library and I bumped into the last few photos that I have of Kay before she went into intensive care.

What's happening?

I'm desperate. For the life of me, I can't sleep. It's a disaster and I have no idea what's behind it this time. Slowly across a period of weeks I've been losing the ability to sleep properly. It started out 3-4 week ago when I found myself waking up around 5am. Then slowly it became earlier until it was 4am. This was not so much of a problem because I had to particular problem falling asleep and I was getting some core rest. But about 4-5 nights ago I started having nightmares or very bad quality sleep and that has now progressed until it seems like it's impossible to get to sleep. 


Saturday night was hell. It took a long time but initially I dosed off only to find myself in a nightmare where I was having a knife fight with someone and was forced to cut their fingers off... It was a very short 'sleep' and I woke with a pounding heart which didn't calm down. I followed this up during the course of the night with a sleep inducing tablet (no effect), then later two paracetamol (which also acts as a relaxant, but to no effect) and finally ended up putting a light jazz mix on my iPhone and trying to sleep with a headset on. This worked to an extent, but not brilliantly. I've been a walking zombie all day. I've not had the energy to get on my mountain bike, which means I'm lacking exercise, which means that I'm probably only making things worse - a real downward spiral.


This evening I decided to be proactive so I took a sleep inducer and two paracetamol before I went to bed. When I found that I still couldn't sleep I put on an audio book in the hope that listening to a story would relax me. This sort of worked, but not completely. I found myself fading in and out of the story, neither sleeping nor completely following what was going on. In the end I gave up and now I'm downstairs, writing this and working on a glass of port as the last resort.


The problem is that I've been here before, earlier in the year, and it was hell. It took ages before I managed to get through it. At that time I was being plagued by serious, acute grief and therefore I could relate my sleeping problem to that directly. However this time I have absolutely no idea what's causing my insomnia. I would suggest that the grief is not as acute as 9 months ago, though we're not having the easiest period. I would also argue that work is maybe a little less worrying than it has been - we had a very good week last week and secured a big order. Prospects for the short-medium term look fair. So what the hell is going on?


This is extremely worrying, which itself makes sleeping more difficult. I just don't feel like I have the strength to battle through days or weeks of insomnia. Sitting here thinking about it has me on the verge of tears. I have important work to do, work that requires me to be able to concentrate and not sleeping destroys my ability to concentrate. I'm so desperate I'm even thinking of taking one of the full blown sleeping tablets that I have, but this will cause a whole raft of other problems, as I learnt at the start of the year.


Help!

Man, This is Hard

I think that you can probably tell from the reduced frequency of these blog entries that we did OK in October. But in the last weeks, and certainly the last days, grief has been weighing on me more and more. I have a load of things that I planned to do today but they have been pushed aside by the overwhelming sense of loss that I yet again feel. I walk past Kay's picture on the wall, the picture that so perfectly captures her, and it seems impossible that she's not here. I know that I've said these things over and again and that repeating them has little value, but I still feel a sense of incredulity every time I realise that she's not here to be hugged, to give me a hug.


I just keep thinking that Kay was so full of life, so fit, so energetic. She wasn't a complainer, she got on with doing stuff, whatever it was that was on her mind. She lived her short life to the full, awake early and immediately busy. The whole day long doing things until she fell asleep, often even before her bedtime out cold on the sofa. She always fought her corner, always wanted to win (even if that meant changing the rules), was always determined. She had so many setbacks but she never complained about her lot, she just got on with doing her best. How can it be that such a wonderful child can lose their life? Why on earth have we not been allowed to see how she would grow up, what she would do with her life?


As time goes by this is one of the main themes that plays in my head. I'm so sure that Kay would have become successful at some kind of sport, hockey probably. She had the physical make-up and fitness for it, the mental drive and determination. Whenever I'm at the hockey club or playing tennis I feel her loss so intensely, I feel that I've lost an entire future that would of been a joy to behold. Even more so because of my three children, Kay was the most different from me. I've never been good at sport, I've never been (and still am not) a gregarious social animal, I've never been so full of the kind of energy and drive that Kay had, that she got from Marion. I recognise myself in Lauren & Nattie, but I could recognise so little of myself in Kay and therefore she was always so interesting and surprising to me. It is of course difficult to know anything about how one's children will turn out, what they are likely to do with their lives, but I feel that I have an idea about Lauren & Nattie, whereas Kay could have done anything. 


I saw a child the other day, a girl with long thick red hair, just like Kay's. I so remember the times that I buried my face in Kay's hair and was amazed by the rich thickness of it, by the colour, by the length. I remember feeling a sense of wonder that a child with such hair could be my child and wondering where she came from. When I saw that child the other day, I wanted to come home and find Kay's hair - I think that when it fell out curing Chemo, Marion put it away somewhere - and I wanted to bury my face in it. I miss her so terribly, painfully, mind numbingly, awfully, inconceivably, infinitely much. I don't know where she came from and I don't know where she's gone. I only know that she's left behind a hole in my life that is simply huge, that she's left behind a father who loves her more than can be described and that the combination of these things is the definition of a broken heart.

Annoying...

Apologies for the silence. Last week, during a largely sleepless night, I sat down and wrote what I felt was a good blog entry. Unfortunately when I attempted to save it something crashed and I lost the lot. I was so disappointed that I couldn't bring myself to try to reproduce it. Also when I'd finished it was 3:30am so I decided to make another attempt to sleep, which worked - kind of.

Last week we recommenced our tennis lessons after a break of two years. I'd forgotten how much I enjoyed making a hash of basic shots on an outside court at 9pm on a cold winter's evening. But my enjoyment was severely coloured by the flood of memories that being on a tennis court again brought back. The last time I played tennis I had a complete family...  Kay loved tennis and won her club spring youngsters championship just before her bone marrow transplant... The bloody minded determination with which she struck every ball...

The past weeks the grief has been easier to bear - the change from acute to chronic, I suppose. It's just there all the time, rather like Kay's bedroom. And like Kay's bedroom, one is left wondering what to do about it or whether indeed anything can be done about it at all. I don't know.

That said in the last days the ache has resumed. I have been missing her so much again, longing to feel her lightweight frame snuggled up against me, longing to hear her laugh or her shouts of outrage when something wasn't going her way. 

I've been extremely busy at the office recently, and we're all under a hell of a lot of pressure for one reason or another. The stress has built up to the point where I'm walking around with a more or less constant pain of tension in my chest. This has been worrying me - which only makes the symptom worse, I have to say - I have not idea what a budding heart attack feels like and I really don't want to know. But last week when this pain was at a peak I started wondering if I should get check out by the GP. But then I thought sprung into my head, along the lines of, "What the hell, if I'm going to have a heart attack, bring it on. I'd rather be with Kay than continue to struggle on like this anyway". 

Of course, my "normalization circuits" cut in and I dismissed the thought. But it did indicate to me that I'm still very far from living a life of reasonable quality. 

Fires and Flares

The current period is a difficult one to describe. I suppose that in some way we're moving from a year of acute grief and loss into a period of - merely - chronic pain. At least that's how it feels. The grief that I feel has lost its sense of "first-timeness" and now feels more "settled". I use quotes here because all of these words are approximations to the truth. An example probably is more illustrative:

I was sitting in the car driving home this evening, contemplating fate, as I find myself doing too often these days. I have already said in this blog that, if I were confronted with a situation where I had to fight for my life, these days I feel that I would just rather give up and choose to go to Kay. My thoughts took a different turn this evening. On the way home I was confronted by a truck that had taken a corner too wide and ended up heading directly towards me, on my side of the road. I had to take the necessary evasive action but afterwards my nowadays fatalistic thinking started reviewing the event. I thought that actually I wouldn't want to die in fear, wouldn't want the last thing to go through my mind to be terror or even just plain panic. And then my mind made one of those horrible leaps that it tends to make these days. It asked me if Kay died in fear?

I have to say that for all intents and purposes I think she did. At least by my definition. To me Kay passed away the moment that she entered a coma and the following two weeks were not really part of her life. In the hours before she entered the coma she was terrified. She was having out of body experiences and was frightened, seeing herself standing next to her bed. She was fighting for every breath and was terrified of losing. She was scared of the procedure that would put her into the coma. She was shouting at the doctors to hurry up, she slapped me in the face when I told her to try to be calm. She certainly didn't die quietly, in peace and she didn't face it with my explicit support because I wasn't even compos-mentis enough to know what was going down. Thus, to my mind, Kay died in fear.

I was shocked to the core by this thought. It's the first time that it has occurred to me. My child died in fear. What a terrible realization. What a terrible thing. I'm horrified. I'm sitting here now with tears in my eyes and an awful feeling in my chest. Oh how I would that it could be different. I want neutrinos to travel faster than light so that I can hope to go back in time and change things. To make a different reality...

And this is how the days go, these days. I'm ploughing along through the sh*t of "normal" daily living like the rest of us, trying to deal with global news depression, European debt, Greece laziness, Philips cutbacks and all the rest of the miserable fodder of modern life, when I suddenly get struck by a mental lightening bolt, by a memory of Kay or a thought about Kay. These moments are so difficult to deal with now. 

Last "Kay year" acute grief meant that I was constantly on my guard for being mentally ambushed by terrible or painful thoughts. But in this new "Kay year" my guard has softened. The result is that when I am ambushed the damage seems to hurt so much more. But equally it feels like there's less "space" for me to be floored by it. By this I mean that I feel that now, if someone found me at my desk in tears, they probably wouldn't have quite the understanding that they would have had a year ago. At least, that's how I feel.

I was driving somewhere with Nattie on Sunday afternoon. She'd been kicking her heels all weekend because we had been painting the lounge. So I took her out to help me pick up the boat. I commented to her that she'd been bored all weekend and she replied quite simply that that had happened often since Kay was gone. A spear ran through my heart, a cold rod of steel pierced me from front to back.

And so I have absolutely no idea how to describe these days except to say that we're still living in hell, but maybe it doesn't feel quite so hot. Until the fires flare up, that is.