A day of Kay Pain

I've woken up this morning with Kay on my mind, thinking about her treatment and what went wrong. Thinking about her slowly weakening in those weeks after the bone marrow transplant. Thinking about her last moments of consciousness. And the eternal "why?" question.

It's a grey miserable day today, even for the South of France. A day that is mourning the loss of Kay. A day that has the same colour and tone as my soul. This is the last day of last year that I will ever share with Kay. From tomorrow onwards she becomes solid history, last year's girl.

I don't know how I'm going to get through today. I'm not yet out of bed and it feels way too hard to face. My back hurts and I feel like the oldest man alive, bent, stiff, in pain, broken. Knowing that there are bits of me that are permanently damaged, that will never work again.

So this is it, my life as it has become. Tomorrow I move on to being the father of a beautiful little girl, the apple of my eye, a third of my heart, who died last year. And the distance from Kay will take a quantum leap. My soul screams and kicks, doesn't want this life, rejects it as being alien, refuses to accept that my KayKay is about to become permanent history, that it is the only way things can continue. That this is Force Majeure.

I don't want to leave this year, the worst of my life. I don't want Kay to be last year's girl. I don't want...

Not strictly on subject moaning

I don't intend this blog to become a moan about life in general. But this once I'm going to say something that is off subject because it's having an effect on me producing on subject material, if you'll excuse the level of indirection.

On Christmas Eve I "did my back in" lifting a basket of wood for the fire that turned out to be much heavier than I'd expected. I was in quite a lot of pain for a couple of days, such that on Monday a friend of ours who is a physio came and had a look at me. She diagnosed a partial slipped disk in my lower back and advised an exercise regime, to which I'm sticking faithfully, believe me. She reckons that this injury has come about because I'm stressed, tired and run down. I guess that I've simply pushed myself too hard during the last weeks and this is the price.

A further problem was that we were supposed to drive to France on Monday. But in the event I couldn't help Marion with getting stuff ready and packing the car, and I was pretty worried about my back during the drive. So we postponed leaving for a day. Our friend the physio arranged for me to get a back brace and I adjusted the lumber support on the driver's seat to maximum curvature, keeping the seat upright. I have to say that our Volvo is pretty comfortable normally and with these additions I drove all the way here in one day, stopping to stretch my back every two hours or so, without major discomfort. However, once here the pain returned. I guess a day sitting vertically in a seat wearing a back brace was pretty therapeutic. Hanging around the house, trying to find a comfortable chair/position to sit in is less so. I've now taken to sitting in a garden chair in the lounge, since it's the only thing high enough and vertical enough not to load my lower back.

The biggest problem is that I now feel like both a physical and mental invalid. My physical state means that I can't do anything, leaving too much time for my mind to roam. I also feel like a complete party pooper because I'm standing (lying actually) in the way of the others doing anything, as a complete group at least.

I'm fed up to the back teeth of being some kind of pathetic weakling, a pitiable subject. Life seems to be unravelling all around me and there doesn't seem to much I can do about it except to focus on wound-licking. Kay's death, skin cancer, slipped disk and more. For goodness sake, how much shit can one guy take? When will I have to stop proving how tough and indestructible I am? It would be so nice to live a normal life for a goodly while.

People who have normal lives, specifically whose children are all alive and healthy, have no idea just how blessed they are.

The Other Side of Christmas

Well, we're here, on the other side of Christmas. This is not an achievement, it's just a fact. My heart kept beating and drove my system on, although for a while I wished it wouldn't. I'm not even going to attempt to describe how difficult and painful Christmas Day was, I couldn't begin to do the feelings justice.

Lauren had a very hard day indeed. She's really suffering from grief, not understanding why, etc. Nothing that I can help her with, the only solution is a lot of Daddy Cuddles, which she got.

Marion did fairly well. No major collapse, she just worked herself stupid the whole day. Is this better? I don't know but it worked for her for a day at least. And now we just have face the end of the year in which Kay died and the beginning of a new year without her. My stomach churns with fear at the thought.

Howe's Today

Snow Angel

What's the protocol for a Christmas with a missing child?

I'm trying to hold off the dreadful thoughts through mental discipline - think about something else, do something else or think about nothing at all. Marion is bathed in grief. She says that everything she does, everything she thinks, everything she touches reminds her of Kay. There's only a hairs breadth between tears and no tears and she crosses the line easily.

This is just a terrible experience. Like a Snow Angel, Kay is demarcated by what is not there, by a silhouette of absence, by an echo of nothing, by a need that can never be fulfilled. The light in our house, the presence of our family, the smell of wonderful cooking serve merely to highlight what is not. With my photographer's eye I can see where Kay is not, but I cannot capture her. With my physicist's eye, her absence is a black hole set in the centre of our lives, visible by the effect that it has on the light that flows around it.

I miss my Kay. From the nucleii of the atoms that make my being to the deepest places of my heart. I miss my Kay.

Kay, wherever you are my darling, I love you more than I can ever say or think or do.

Habit dies hard

The presents that I bought for the kids to give Marion arrived yesterday. So this morning I showed them to the kids so they could choose which one they want to give. Don't ask me how it came about but I suddenly realised that I'd bought THREE presents, one for each girl. Ouch x Mega Millions.

So now what do I do? Let two girls give three presents thereby emphasising the missing one? Or do I give the third present myself and pretend the hole is not there? Or should one be from Kay thus almost certainly triggering an outburst of tears? So should I leave the third one in the cupboard for another day and just ignore the subject?

Man, I hate this, the pain is so intense.

Not Enough

I still cannot begin to understand how a whole living person, a child so full of life, can be turned into merely a photo and an inadequate collection of vague memories. It doesn't make any kind of sense. It's not enough, the imprint that Kay has left behind. It's not substantial enough, not enough to hold on to.

My need to hold her has never been greater, nor has my disbelief in the course that our lives have taken.

Another Busy Week

This week has been long and tiring. Lauren's flight home on Thursday was cancelled due to bad weather in Germany. I managed to move her onto a Brussels flight on Friday evening, which was fortunate because Brussels was the only major airport operating. But it did mean that I had to drive to Brussels and back, which left me exhausted - I got home at 10pm. So far this weekend I've been messing around without much energy for anything.

Last night we had a very good evening out with a bunch of people, but we ended up going to bed around 2am. I was up at 8.30 because I was wide awake. Since then I've introduced Nattie to "Thunderbirds", which was an instant hit, we've been for a walk and a snowball fight, I've cleared the drive of snow and unblocked a gutter.

However Kay is weighing heavily on my mind during all this. Last year I was dragging her through the snow on a sledge using my mountain bike. Yesterday evening I had to fight off tears when someone said something that reminded that we watched winter turn to spring from Kay's hospital room - when we went in for the bone marrow transplant there were no leaves on the trees and when we left the trees were in full bloom. While writing that I just had another one of those shock moments, not being able to believe what has happened...

Anyway, I've still got a load of things to do, so I'd better run along for now.

The Drowning Sailor's Analogy

It occurred to me recently that Grief is a Sea and I'm adrift in it, without a boat, wearing only a deflated life jacket. There's a Perfect Storm raging and it's dark, there are huge waves, heavy rain and a howling wind.

The immediate struggle is to keep my head above water and thus my mind is largely occupied with survival. But I can't keep floating around out here forever, before long I'll run out of energy or the willpower to keep floating or both. Therefore I must find land.

But it's dark, raining and I'm being tossed around in the waves with no way to navigate and no idea where to find land. Every now and again a huge wave crashes down on me and I struggle not to drown in liquid sorrow.

In the quieter moments between the wave peaks I try to get more air into my life jacket so that I float more easily. If only I can let the life jacket do the work I might not be swamped by waves so often, might be able to think more clearly, might gain confidence in my chances of not losing everything, might be able to find some way to navigate to land.

This is featureless terrain and every clue helps. Being told that others have been this way before helps - at least one then knows that it is survivable. Being told that it takes 4-9 years to find land helps - at least one then knows that there's land out there somewhere. Talking to observers helps - they can spot an improvement in the conditions that can't be seen from the waterline.

But equally, no-one can swim for you, in the end you have to do it yourself.

Washing hurts

Marion called this morning, in tears. She'd been loading the washing machine when she had to think about all the times she had had to wash stuff at 40 degrees because of the hygiene rules for Kay. I have to admit that I have similar thoughts every time I wash my hands - I miss the need to rinse them in alcohol afterwards.

Oh how lovely it would be to have to still be using alcohol, to have to keep visitors out of the house, to have to travel to Nijmegen every week, to have to use the Webchair for school, to have to fight about removing plasters... To have my Kay to cuddle.

Kanjer Ketting

I have just plucked up the courage to do a job that I've been meaning to do for a while: photograph Kay's bedroom, in detail. This has been a heart rending task and I've had to lose myself in the photography rather than the meaning. This is the bedroom of a child who is not finished with life. Full of stuff being done and things still to do. And memories.

The centre peice of her bedroom is her "Kanjer Ketting" (KK to save me typing). "Kanjer" means a tough, strong person and "Ketting" is a bead necklace. Here's a photo of her ketting:

The KK is effectively a record of Kay's complete treatment from October last year until her death. Every bead represents a different treatment or procedure, from having to swallow an NG tube, through a blood transfusion, through radiotherapy to her actual bone marrow transplant and beyond. Marion cleverly added the week numbers as well, so the KK represents an accurate picture of Kay's complete treatment.

As you can see, there are hundreds of beads of many different types. The KK is metres long when stretched out. One day maybe I'll get around to documenting them all, but that's way too difficult for me to face now. Apparently, the cost of running the KK program for all the oncology kids is around EUR 40,000 per year. But we have always thought that it was worth every single cent. Kay was always very keen to get the bead for any treatment or procedure and was especially excited to get rare beads. In fact, one of the Physiotherapists made a special bead for Kay, so there are one or two that are completely unique.

You cannot imagine what the KK is now worth to Marion & I. Marion carried it like this, mounted on the cushion so, at Kay's memorial service. We are thinking of having it encased in glass or resin to preserve it for all time. It truly shows what an incredible Kanjer Kay remains.

Another small thing that struck me was all the various medals and Kay got for different sports and activities: tennis, riding, hockey, walking, etc. She always loved to win, was determined to win and was never happier than when she came home with a medal of some kind.

Now I'm starting to feel the grief rising so I'd better go and do something else. At least we now have a permanent record of Kay's own place.

Friday Evening At Home

We had various plans for this evening. A drinks party, then Marion to her cooking club and Nattie & I to a firework display. But Nattie is ill, running a fever. So Marion went cooking and Nattie & stayed at home. Neither of us felt like doing much, Nat didn't feel like eating anything and I didn't know what I wanted to eat. So I made an omelette, whoopee.

And that summarises our evening. I'm now struggling with the onset of a wave of grief, which isn't helped by being alone. I don't want to go to bed. Actually, I'm rather scared of going to bed. So I'll carry on messing around down here till Marion gets home, whenever that will be.

As a piece of background, two weeks ago I was diagnosed with skin cancer, a piece of news that was emotionally devastating at the time. Yesterday I got the result of a biopsy. Good news, it's the most mild form of skin cancer and it will be treated in a few weeks time by "light therapy". I suppose that I should be happy about that, but I can't bring up much enthusiasm to be happy about the absence of a negative. The last time that we were doing such things was during Kay's last days when anything that wasn't bad news was good news.

This house is way too empty these days.

A different phase?

Yesterday was a pretty black day for me. I found that whenever I was alone, tears came. I sat in the car driving from here to there, in tears. So I avoided being alone all day. 

I found that if I talked about Kay, tears came. So I avoided talking to anyone about anything to do with Kay. I spent the day trying to avoid being alone but trying to avoid any conversations about Kay. At the end of the day I was exhausted and finally, when I went to bed, grief took over.

Lying in bed, thoughts of Kay ran through my head. Suddenly something fresh occurred to me that shocked me, the feeling that I've described before, like sticking a finger in the mains socket. Then I realized that I've not had that 'shock' feeling for a few weeks. It's not so long ago that I was shocked 10 times a day by thoughts of Kay. It occurred to me then that perhaps Marion and I have moved into a new phase. Perhaps we have finally passed through the "shock phase" and now we're in the "deep grief phase", if there are such things as phases of grief.

It would certainly be an explanation of what is going on with us at the moment. For the last 10 days or so Marion has been more deeply upset than I've seen her so far. Or maybe I should say more continually deeply upset. Previously both of us have had moments of deep grief that lasted an hour or so. But it now seems that these periods last much longer. In the last few days I have begun to feel the same. The weight of grief that I'm carrying seems more constant and I feel much more tired than previously. Tears, surface or sub-surface, are a constant companion. Reading is difficult, as is concentrating.

So, I suppose the good news is that we're progressing, we're not stuck at some point that will lead us to remain sad people indefinitely. But on the other hand things are not better, just different. And also I feel a kind of regret that we're "leaving Kay behind", if you follow my meaning. We are moving on and we're leaving our lives as they were with Kay behind. Things are irrevocably changing, shifting, separating us from Kay, emphasizing that the only thing we have left is memories.

Esther told me today that a study of parents who had suffered the death of a child took between 4 - 9 years to recover their equilibrium. I like to know these things because it gives me a measure, even if the bad news is that we're facing many more years of 'inequilibrium'. The good news for you, dear reader, is that you get to enjoy my moaning and musings for a lot longer yet.   

Nattie and Sint

Nattie got a letter from Sint yesterday. It turned out that instead of just dumping presents on the front doorstep around supper time, Sint setup something rather more cryptic: five poem, each containing a clue to where a present was hidden in the house.

Nattie gets a letter from Sint

I have to say that Sint was pretty clever and had me scratching my head. In fact Nattie solved one of the puzzles before I even had a clue.



Figuring out the clues with Kay looking on

Eventually even Mama had to help, although Mama's ideas were so good that it was as if she had insider knowledge.

Mama advises on the clues

But the evening wasn't complete without a dance with Daddy.

And so Sint leaves us for another year. But of course Nattie has dual nationality and so gets a visit from Father Christmas as well, the lucky girl.

The Season?

As I sit here attempting to distance myself from last week by writing about it I feel a sudden upwelling of pain and a tidal wave of tears heading for my eyes. It's been a hard week, mostly for Marion but with knock-on effects for me. 

On Tuesday evening, when I got home from work, I found Marion is a very poor state. I have no idea really what specifically caused it, but minutes after I arrived home she dissolved into inconsolable sobbing. She kept repeating that she didn't understand why Kay had died, didn't understand what had happened. These days I have nothing left to say to her, everything has been said and we're no closer to any answers than we were on the 19th of September. So I just held her.

She pulled herself together long enough to serve up the food she'd been cooking but she didn't get half way through her portion before she broke loose again. I pulled her close to me and tried to comfort her but there's really no comfort to be offered, there's only the pain of our loss. Things just got worse. I asked Nattie to help and we made a "cuddle sandwich" with Marion in the middle. To no avail. I started to feel a creeping sense of desperation. Something new was happening, it was like Marion had sprung a leak and grief was flowing uncontrollably. I started wondering if the entire dam was going to give way. For more than 90 minutes Marion's sobbing continued. She grasped at memories, asked unanswerable questions, cried her heart out.


But there were also secondary effects. Marion was pulling me closer and closer to the edge of reason, closer and closer to my own meltdown. And I was worried about Nattie. Was she able to deal with Marion's sorrow, with cuddling her poor Mum? And what would happen to Nattie if I lost it as well? My desperation turned to panic and in the end I decided to call our GP. She came round immediately and for the second time in two days. I departed the scene with Nattie, took her to bed and read to her from "Ten Tall Tales". In between stories I asked her if she was OK, whether she was worried about Mama. Her reply was "A bit". But soon enough she fell asleep in our bed and I lay there for a while staring at the moving wallpaper.


Once the sounds from downstairs started to sound like normal conversation I dared to stick my head down the stairs. Marion and our GP were sitting drinking tea and chatting, so I headed down to get myself a cup, relieved that Marion had made it through another crisis. Later, around 11pm, a friend turned up and took Marion for a walk in the woods. I retired to bed feeling exhausted and emotionally beaten.

Marion has remained extremely fragile and tearful the whole week. I guess that it's the time of the year and the inevitable emotional confrontations that we have to face. Today is the day that "Sint" distributes presents to Dutch kids, normally a day of much excitement in our house. But this year is different from last, by one child exactly.


I'm able to lose myself in work for 7 or 8 hours per day, time when thoughts of Kay or thoughts of avoiding thoughts of Kay are not dominant in my mind. But Tuesday's battle left me feeling seriously emotionally destabilized for the rest of the week. Unfortunately Marion is struggling so much to simply function that I think my needs passed her by in the last days. On Wednesday evening we were due to go to friends for a birthday drink. I didn't feel up being in public, I didn't feel emotionally well at all. So I said this to Marion and decided to stay at home. Marion said that she'd only be gone for a short while, but in the event she wasn't home until midnight. I had a bad evening on my own and a worse time when I went to bed. I really didn't and don't want to be on my own these days.


On Friday Marion was still clearly really having a hard time, the misery and pain could be read off her face. For the last months Marion's Mum and her Aunt have come over on Fridays to give Marion a hand round the house. But this Friday her Mum called to say that they were worried about the weather and wouldn't be coming. I knew that Marion had rather a lot to do and would miss the help and support so I called her after lunch and offered to come home and do some jobs for her. She was out for a couple of hours in the afternoon so I was on my own in the house, pottering around doing stuff. The emptiness hit me very hard and I felt a wave of grief rising in my chest. No wonder that Marion's struggling. My sticking plaster was to turn on some very loud music to fill in the space and to create some energy. And also to stick my head into the jobs I had to do. 


All this evasion goes only so far. It seems that one builds up an emotion head of steam that has to be let out at some point. I'd rather be controlled about the letting, it seems less painful that way. Maybe the integral is the same, one can either get rid of 'excess' grief shortly and sharply or over a longer period at lower intensity. I choose for the latter, I'm a coward like that. Yesterday evening I made some tea for us - we had friends round - and I used a mug with a photo of Kay on it for myself. When I noticed what I'd done I was blasted by a sudden sense of loss and I dissolved into tears. My turn this time.


Today I feel like the weather. It's dark, miserable, colourless, cold, bitter. Ten centimetres of snow is being washed away by rain. Not a day to go outside, not a day to do anything and I'm certainly being successful at that. I'd intended, as usual, to do some cycling (on the simulator in this weather). But I'm drained, lifeless and empty except for sadness and grief, for waves of tears that threaten to make themselves visible. 

Oh how I miss Kay. Everything else is a function of that feeling, that need, that absence, that hole. As Marion has said so many times this week, I just want to hear her, feel her, touch her, smell her.


If you see Kay...

Very Hard Week

My silence this week comes not from a lack of desire to blog but from the fact that it's been a very hard week, one of the hardest so far. I'm now too tired to explain, I'll try and do that tomorrow. For now I just want to try to sleep decently and get some rest. I feel frayed, battered and emotionally beaten.

And I miss Kay so terribly, terribly much that I can't believe that a mind can feel such pain and remain functional. The intensity of her absence is greater than any emotion I can ever remember feeling. It's like a black hole that is sucking the colour out of life, that is distorting all the emotional space around it such that the terrain of my feelings is no longer recognisable. A black hole that is inevitably drawing everything in, that is becoming the centre of my life, the centre of my emotions, theme of my future, the force majeure from which there is no escape.

One Drug Less

The good news today is that I'm off the antidepressant drug. I have to admit that I've cheated a bit, we had originally agreed with our GP that we'd reduce the dosage in steps over five weeks. But I was suffering from so many side effects that I pushed a little harder and got rid of it in four weeks - this is the same time that it took to build it up in the first place. The result is that the nasty headaches, toothache and shoulder & neck pain that I was suffering a couple of weeks ago have almost gone. My head feels, hmmm... how can I put this? Less restricted? Clearer? Difficult to say.

The reason for starting with this drug all those months ago was because I felt a creeping sense of despair. Certainly I don't have that feeling anymore so either the therapy worked or, more likely, the worst has happened and I'm actually now in the place that I was dispairing of being.

The bad news is that the sleeping problem persists. Last night I attempted a third night without using a sleeping tablet. I tried to induce sleep using melatonin and the lighter drug I'd mentioned previously. But again my mind simply wouldn't relax enough to enter a sleep state. At some point I started to drift off when suddenly I was 'shocked' awake. That was enough. It was 12:30am and I wasn't prepared to fight another night so I gave up and swallowed a damned tablet. I then slept pretty well, but not long enough.

Maybe it's too early for me to be dropping the sleeping meds. My mind just won't seem to rest of its own accord and too often when trying to get to sleep I find myself thinking about Kay, about her last days, about her beautiful persona and other painful things that lead away from peace of mind. I also noticed last night that immediately I turned out the light and closed my eyes my heart started thumping in my chest, an obvious indicator that I was not fit to sleep irrespective of the fact that I felt extremely tired. This is pretty frustrating. I long for the tine that I could put my head on the pillow and blink out for 7 hours or so, to wake up feeling refreshed and looking forward to a new day. Waking up at the moment is an exercise in wishing I could just go back to sleep again, wishing I could slide away from the horrible reality of a world without Kay.

Update

Finally decided to reattempt sleep at 3:15am, but no luck for at least an hour or so. Eventually the churning 'real' thoughts in my head turned into churnng 'unreal' thoughts and I entered some kind of sleep/dream state. 'Woke up' at 8am, if you can call it that, with a feeling of not having had any mental rest at all. Marion has snored the whole night away, in a ladylike way of course, and is still doing so now. Gggrrrrrrrr.....

Not Sleeping Hell

I'm struggling with the whole sleep thing again. Marion has managed to get herself off the sleeping tablets in the last week. Although this has meant that she's had a week of poor quality sleep, she tells me that one just has to get through it and that now she's sleeping normally. Emboldened by her success, last night I skipped the sleeping pill but took the proferred homeopathic alternative. The result was pretty horrible. 

Initially I couldn't get to sleep at all, I lay in bed tossing and turning, hovering somewhere between sleep and full consciousness. Eventually, at 1.30am, I gave up and took a lighter sleeping tablet that's meant to help one fall asleep. I guess that this did its job because the next thing I knew I was in the middle of a terrifying nightmare. I was descending some stairs when suddenly something I couldn't see grabbed both my wrists. My eyes were closed and I couldn't open them to see what had grabbed me and I was struggling more and more and becoming more and more frightened...  when Marion woke me up. My struggles had woken her up and she realized that something was wrong and so had intervened. I can tell you that I was rather relieved.

I then went back to 'sleep', but continued to dream unabated. Sometime in the early hours I was back in the hospital, in 'our' room on the childrens ward. I decided to go up to intensive care to see how Kay was doing. When I went into her IC room, I found a much younger Kay lying on the floor. She'd obviously fallen out of bed. I started yelling for a nurse and as I looked at Kay her leg suddenly moved. My heart raced. I picked her up and put her on the bed and suddenly she sat up. My heart burst with joy, Kay was back from her coma. She opened her eyes, but was clearly disoriented. I continued yelling for a nurse. Kay then tried to say something to me, but could only mumble. The the nurse came in and I ran out of the room and raced downstairs, burst into the room where Marion was and told her that Kay had woken up from her coma... and then suddenly I woke up and was immediately hit by the realization that it was all a dream and that Kay is gone. Need I say more?

Man, this is extremely tough. Esther told me that the sleeping meds block REM sleep and that it's quite likely that one has to go through a period of effectively catching up on a REM sleep deficiency. But if this is what I'm going to have to go through before I can return to sleeping normally, I have no idea what I'm going to do. I can't face the idea of more nights like last (Friday) night. 

Another consequence of last night is that I've been pretty tired all day. We have been out most of the day doing one thing or another and we got back around 4pm. I put my feet up on the sofa and almost immediately dozed off for an hour or so. A bad move since this almost always makes it more difficult for me to sleep at bedtime. But anyway, we went to bed at the normal time and I decided to bite the bullet and skip the sleeping tablet again - might as well get the bad nights over with as soon as possible. And since it's weekend, if I'm tired tomorrow (Sunday) it doesn't matter so much. But this time I decided to immediately take the lighter "fall asleep" tablet in addition to Marion's homeopathic solution, I had no desire to lie around waiting for sleep to come.

Well, so far this has all been a big failure. It's now 2.15am on Sunday morning and I'm sat downstairs writing this blog entry, absolutely wide awake. I guess that I've been sunk by my afternoon snooze. After taking the aforementioned tablets I lay in bed reading for a bit and then tried to sleep. But I just re-entered the sleeping/not-sleeping zone where my control over my thoughts starts to soften and they go spiralling off towards stress-generating subjects. There's a perversity about this: I need to exercise mental control to relax but as I start to relax so my mental control slips and I start to "unrelax" and so cycle backwards and forwards. But I'm also aware of the whole thing and I start to get frustrated that I can't relax and then the whole show is over - I'm awake, annoyed and far from the level of relaxation that I need to sleep.


The easiest thing would just be to knock back a tablet. But that way lies a kind of addiction. I have to and I want to get off these damned tablets. But equally I've had a sleeping problem for a long time now, for months before Kay died. So maybe it's a bit optimistic to think that I can straighten myself out quite so quickly. But then again, if not now then when should I tackle this problem? I don't really want to try to tackle it during the Christmas holidays. I'd rather like to have a rest during the Christmas period and battling with sleep problems won't help with that goal. Equally I have a lot of work to do the coming weeks and turning up at the office, brain-dead due to a lack of sleep, is not going to help that either.

But then again, again, I hate being dependent on anything, certainly anything artificial and it's going to bug me that I've got a dependency that needs sorting. And Marion's pushed through it, so why can't I? And further, if these tablets build up a REM sleep debt, the longer that I'm on them surely the more mentally painful and difficult it's going to be to unhook myself from the dependency. Also, the sleeping tablets get less effective with time, so then I'm simply building up a REM debt for less gain. Therefore my thinking is that this is a problem that needs to be dealt with sooner rather than later.

So here I am, wide awake in the middle of the night, fearing sleep, dreading failing to sleep, but equally knowing that I'm going to be a zombie tomorrow (today) if I don't sleep. 

I wonder if I can find an ancient copy of the "Val Doonican Show" on iTunes? That would probably be an instant and non-toxic way of falling asleep, though I suppose that there would be a risk of permanent brain damage if I didn't fall asleep within the first few minutes.

Dobby

This being Harry Potter season, one of the films is on TV tonight. Which reminded me of just how much Kay was scared by Dobby, so scared that she dare not watch any episode that was Dobby centric. So I suppose that she won't miss the final installments. Or maybe I'll just miss her hiding her face in my chest whenever Dobby appears.

The limits of a blog

Blogging has its limits, as I'm finding out in capital letters this week. A bunch of things have happened that are too sensitive to air in public. But trust me, another couple of kicks have been dealt out the last days. Before anyone assumes the worst I should say that the impact of the kicks is, hopefully, largely emotional. But today I have been completely knocked sideways by some news that I had this morning, to the extent that I've been non-operational and very upset all day. Sounds a bit wimpy stated like that, but yeh, it's also accurate.

Part of my strong reaction is because it feels like another 'story' is about to start. Now, I have received assurances that this is not the case, but still, given our experiences during the last years it's difficult to give bad news the best interpretation. I thought, hoped, that Kay's death would be the very last chapter of difficulty in our lives. But I suppose that that's the definition of false hope. Or maybe not, we'll see.

To neutralise my shock and occupy my brain I've subjected myself to back-to-back episodes of "Reggin Perrin" this afternoon, both the new series. For those not in the know, this is a comedy series about a business executive going through mental meltdown/midlife crisis. It's very funny but in a way that sounds more than a note of reality. I have been simultaneously laughing and wondering about adopting some of his crazy ideas myself. Going to work in a white suit, imitating voice mail to avoid taking calls and taking nothing seriously sounds just about right to me. Ha!

Anyway, I'm extremely tired, too tired to continue writing around the edges of stuff.

Detox

Over the last weeks we have been slowly weaning ourselves off the support medication. To recap, both of us have been on anti-anxiety/depression meds since July or so, and on sleeping tablets since Kay's death (that word is oh so wrong). The anti-depression meds played hell with my system for four weeks when I started them. I had a permanent headache, dizziness and nausea. My head has not felt right for months, but of course there's no way to be certain of the cause. However I don't like taking drugs and, since I generally feel rough these days, I'm fairly anxious to eliminate any external sources of problems.

So we started the process of slowly detoxing from the antidepressants three weeks ago with a plan to be off them after five weeks, give or take. Last Monday I was down to a 50% dose but as I mentioned, I started suffering some very bad symptoms a couple of days later. Again, headaches, nausea and dizziness with the addition of very painful shoulders and neck.

We had originally also agreed with our GP that we would tackle the sleep meds later. But I had noticed that they were having progressively less effect, namely I was falling asleep later and waking up earlier. This is an indication that my system was getting used to their effect. So after chatting to our GP we both decided to try reducing the sleep meds. The plan was to stop them three nights per week in a planned way.

So last Monday night we skipped them for the first time. The result was fairly dramatic, we both had a terrible night. During the period that I have taken these tablets I have had more or less dreamless and restful sleep. But last Monday I slept very lightly and 'woke' the next morning feeling like I'd caught up on two months dreaming in a single night. And weird dreams they were indeed, at one point putting me in a canoe in Rotterdam harbour with a friend. Marion had exactly the same experience (not including the canoe), strangely enough and the result was that on Tuesday we both felt as if we had been lightly beaten with sticks the whole night.

For some reason that I've forgotten I decided to repeat the experiment on Tuesday night. However my cunning plan this time was to use a lighter sleep inducing drug that we'd still got in stock instead, the theory being that if I could get into a deep sleep then hopefully I'd stay that way. I also managed to convince Marion of the wisdom of my theory. But it turned out to be a stupid idea, we simply repeated Monday night's experience. Thus Wednesday started badly and went downhill from there. I have now resolved to continue with the sleep meds irrespective, trying to reduce both drugs at the same time is way too hard. Having said that Marion is toughing it out according to the original plan w.r.t. the sleeping meds but using homeopathic alternatives.

As I mentioned yesterday, various interventions seemed to have counteracted the diverse physical effects that beset me. Friday through till this morning I have been feeling reasonable. But this afternoon I started to feel rough again and as I sit here the shoulder pain has returned along with the nausea and I'm feeling extremely tired. The idea that I'm probably only half way through the detox process is pretty intimidating. I simply can't wait to get off this medication and return to "normality" where, according to Hitchhikers Guide to the Galaxy, "Anything you still can't cope with is [therefore] your own problem".

Hard Week

Apologies for the lack of posts. Last week was a hard week for both of us and I just didn't have the energy to write. On Monday I had a major emotional dip. Then on Wednesday my physical symptoms took a major turn for the worse.

In the afternoon I started to feel terrible. I went to lie on the bed but I couldn't rest. My mind kept slipping to thoughts of Kay and I kept being hit by panic attacks. In the evening I started suffering from neck and shoulder pain to the extent that I was horizontal with a hot water bottle and strong painkillers. I also had a thundering headache and nausea. Coincidentally on Thursday I had standing appointments with the homeopath and, separately, the physiotherapist. The homeopath gave me yet another, but stronger, dose of the same medication that I had two weeks ago. The physio recommended acupuncture and proceeded to stick me with 10 needles.

Now, I remain completely neutral about homeopathy. I take the medications and hand them to Marion and she manages the application. I pay no attention to what I'm taking and I have no expectations. Acupuncture is something different, from previous experience I have some expectations.

The acupuncture delivered more or less immediately, the feeling of nausea decreased as did the pain in my shoulders. But neither to a huge extent. However on Friday I felt a hell of a lot better, less pain, no nausea and generally mentally stronger. The effect of the homeopathic medication? Draw your own conclusions.

Further, on Friday afternoon I had a fantastic massage from a friend, which was so good that for the first time in ages I felt some pure, uncompromised enjoyment. I had a smile on my face for the whole of Friday evening.

The combination of all these things is that yesterday I managed to spend the whole day doing jobs around the house. Between 9am and 6pm I think I didn't sit down for more than about 30mins. It was good to be busy in this way, the house is showing signs of a distinct lack of TLC. Light bulbs have now been changed, lights and pictures hung, the fireplace cleaned, etc, etc. We're working on creating a "Kay Corner", a permanent location for her beautiful photo with a table underneath with the hockey ball from her final match in which she scored five goals, and all the other important momentos of her life.

Irrespective of all this we continue to struggle emotionally. Marion has just this minute burst into tears. I asked her whether Kay got a trophy for winning her club spring tennis championship this year and this was too much for her. Yesterday it was my turn. We were visiting friends and Nattie and their son started making candles. This suddenly reminded me of the soap and perfume making sets that I got Kay for her birthday and how we spent a few hours here and there making smelly soap. This memory was just too much for me and I fell to tears, as I'm starting to do now while writing this.

It is truly terrible, how much I miss Kay. My heart aches for her. Everytime I walk into the lounge and see her photo I just want to put my arms round her and hold her close, so very close. Today I went mountain biking and it's so hard to put to one side how much Kay was looking forward to coming on her mountain bike with me.

We're now entering the difficult festive season and I'm dreading it. There will be so many tears and so much pain. I can't believe that it's possible for a year to contain so much. This is the year that Kay won the tennis, when she played inspired hockey, when she drove herself to take part in selection training, when she survived chemotherapy and terrible mistakes in her treatment, when she came through the bone marrow transplant extremely well, when she weakened, when she died. How can all this be possible in a single year? How can our lives have been ripped to pieces in such a devasting way?

I was thinking this afternoon how difficult it is to tell people just how certain Marion and I were that Kay would survive. We never really believed for a single second that Kay would not survive. The thought never really crossed our minds. This may seem strange, certainly if you read Kay's blog, but it's true. We never never NEVER expected to be here, now, in this situation, without Kay. Think about it, that after everything that happened the possibility of failure never really was a possibility to us. Then just maybe you might begin to understand one of the most difficult aspects of how we feel. Certainly this is one of the major reasons why I'm still in shock, I still can't begin to comprehend our loss.

I've rambled on for long enough right now. Long blog entries become boring.

Night night.

Broken Promises

Here's an example of how variable my thoughts and feelings can be: I was just driving home from work feeling pretty good because of an excellent development in the business. I started wondering how much Kay had influenced things for me, how much she was looking after us and she was immediately in my head again.

And then suddenly I was reminded of all the promises that I had made to her that everything would be alright. How often I told her to look into my eyes and trust me that everything would be alright. How often she would tell us that she felt that her body was giving up and how many times that we convinced her that it wasn't, that she was doing well. How, when her blood counts suddenly soared at the end of August and the bone marrow boost was cancelled, I told her that it was proof of the fact that her body wasn't giving up, that everything would be alright, that her daddy had been right all along.

How wrong can one be? How many promises did I make that I couldn't realise? That weren't mine to make? How much trust did I betray? How many lies did I tell?

Oh, my Kay. I hope you understand. I hope I didn't betray you, lie to you, although I broke my promises. I would do anything to make it otherwise.

Low Day

I've been struggling to stay on an even keel today. I think that the wind from last week has fully left my sails and the momentum that I'd built up has gone. (Thinking about it, thats a bad metaphore: if there's no wind a boat must be on an even keel. Hmmmm...) Again I had all sorts of plans for the day but in the end I just alternated between reading and dozing off. Lauren called, she's also been having a bad day and we shared fighting off tears together for a while.

I've taken to reading a bedtime story to Nattie regularly. But unfortunately we left our Dr Zeuss collection in France and we're now down to our last Thomas the Tank Engine book. I checked in the Kindle and iPad Bookstore but Thomas is not yet available as an eBoook. Looks like I'm going to have to order a printed book for the first time in a year. Gee, how old fashioned. It's that or search Kay's bedroom for more English books.

I guess that it would be a good idea if I took the coming week at a slower pace. Spending a whole weekend recovering from work is not my idea of a better quality of life.

A Moment of Quiet

I'm sat here on Saturday afternoon with a long list of things that I intend to do and no intention of doing any of them. I got some advice from my brother-in-law a while ago in which he said "be good to yourself". So I'm heeding his advice and sitting here reading, listening to music (The Script twice already). Marion keeps saying things to me like "weren't you going to do this...? Or didn't you plan to do that?", to which my answers are "Yes" and "Yes". But I'm still sitting here, now on my laptop simply because I feel weary to the core of my bones.

"Weary" is a better word than "Tired", because I'm not really sleepy. But the last week has been so extremely busy and that my operating battery is pretty much completely discharged and I just feel like sitting here and reading. I also feel guilty about it because there's so much to do, so many important things to do. Normally I don't sit still, can't sit still, because feelings of guilt and obligation usually win over. But when they don't it's an indication that I do indeed need to just sit, that my body and mind need a moment of quiet to recuperate. So that's what I'm doing (and still feeling guilty about it).

The last week was an important week for the business. This is not the place to go into it, but my team has worked extremely hard to accomplished an important goal and they have done it with style. We have had a good week, but it demanded (relatively to recent times) a lot of hours from me and a lot of mental output. I was fairly apprehensive at the start of the week whether I could indeed do everything that was required. I succeeded (I think), but the cost has been quite high. Every evening I've felt more or less like I'd cycled 150km that day. And so I'm sitting here, hopefully recharging.

Mentally, I've felt stronger this week. The grief remains the same but my ability to manage it has improved marginally. I can think of a couple of things that might explain this change. It might just be the natural progression of the Sickness of Grief. Alternatively it could well be that I have been working so much that my mental health has been less exposed to grief and its corrosive effects. I could imagine that this has allowed my mind to heal a bit, resulting in me feeling stronger. Also, the business is entering into an exciting phase. The future of the business looks bright(er) and I feel this excitement through the grief of Kay's passing. Maybe work is a therapy for grief, or at least my kind of work.

But there's another explanation. I went to Marion's Homeopath on Tuesday. I spent an hour describing to her my symptoms, both physical and mental. The list takes an hour to detail (ha). In order of seriousness she felt that my grief and depression were the most important symptoms to treat and she gave me four tiny tablets, two of which were to be taken when I got home. She warned me that she was giving me a high dose of whatever and that if I had any side effects I should let her know. Also, should I continue to feel as bad I should give her a call and would instruct me to take the remaining two tablets. The way that she handled this stuff and the instructions I was given led me to conclude that it was pretty powerful. I drove home carefully, avoided braking sharply or taking corners too fast and took the tablets while sitting down with my centre of gravity well to the back of the sofa.

Now, those of you who have been reading my bleatings for a while will know that I'm a person of skeptical mind. Although I've had some positive experience with alternative therapies in the past, I have a very dim view of homeopathy. But I have to say that since taking those tablets my grief has not been pressing in on me quite so hard. I've been able to deal with some difficult, emotional moments. I've it made through a series of long days. I've been able to comfort Marion during her difficult moments without feeling quite so close to overload myself.

You are of course free to choose your own point of view. But I remain open minded about this homepathy business. I have to admit that it's a forced kind of open mindedness, my instinct is still to dismiss the whole thing as voodoo, placebo and coincidence. But equally the homeopath was the first person to advise a high dose of vitamins and I'm 100% certain that that resulted in an immediate improvement in my condition. So she gets the intellectual benefit of the doubt and I'll go back to see her shortly. 

To carry on with the qualitative, I've said before that in one of the few moments that I've had since her death when I felt Kay talking to me, she told me that she was going to look after Marion and I. Yesterday I was in an important business meeting and all of a sudden I had a sense of her presence. Then her picture came up on the screen background of my laptop and I looked into her eyes and I felt reassurance that everything would work out. Strange. It made me feel more confident, which is always a good message to transmit during these kinds of meetings. A message that of itself biases the outcome positively. Maybe my missing daughter will yet become a force in business. Maybe her father will embrace the idea that not everything that counts is countable.

And yet the grief, disbelief and denial continue unabated. I only need to look at Kay's picture to feel the electric current of shock pass through my chest. I only need to think back for my heart to start racing with the fear of losing her. I only need to think sideways to miss her presence in my life, her cuddles, her laughter. I only need to look forward for the pain of a future without Kay to burn in my mind and flood the back of my eyes with a wall of tears.

But just maybe I'm heading towards being a bit stronger, a bit more able to manage the mountain of pain and grief that beset me.

Short Update

I've been extremely busy this week, within my limited capacity, preparing for a couple of major business events. I'm tired to the core of my bones. Fortunately I have only one more event to go before things get quieter again. I haven't had the time to sculpt a blog entry, will get round to that in the weekend. 

Being so busy has kept a lot of things at bay. But in contrast Marion has had a very hard week, yesterday breaking down a couple of times. The goal for the weekend is for us both to find some quieter waters. 

Oh, Nattie

I just got home from work and went up to see what Nattie was doing. She was busily working away on her computer. I looked over her shoulder and saw that she had a picture of her and Kay together. I asked her what she was doing and she proceeded to show me a beautiful Powerpoint slideshow that she's making about Kay's life. She has downloaded her favourite pictures of Kay from my Flickr collection and, one by one, is adding them into her slideshow. She has added text to each slide describing Kay or the scene and has fully animated the transitions and the slide timing.

I had an explosion of reactions: astonishment that she could find her way round Powerpoint so well, pride in my clever daughter and the deed that she was doing, wonder that she has the strength and ability to do such a thing, concern that that quiet mind is still so busy with Kay in such a "silent waters run deep" way. And of course GRIEF. I asked her why she was making the slideshow, whether it was a project for school. She replied, "Just because".

My eyes started to fill up and my voice choked off. I managed to tell her that it was wonderful and made me very emotional before hurrying out. Once I'd recovered my equilibruim I went back and encouraged her to continue.

What an amazing child. What an act of love. I don't think possibly bring myself to attempt such a thing.

The Right Moment

Diane posted this link to a grief recovery website in a comment yesterday. I've been reading it this morning and it's very interesting. The thing that pricked up my ears was a remark about being in foreign territory without a map. Yes, that's just how it seems.

Thanks, Diane.

No Way Out

It's late. I'm tired. But a huge wave of grief is building, so much so that I don't want to go to bed, don't want to go into a dark room and try to sleep, don't want to not sleep, don't want to face this grief.

Marion's already long in bed. She was very tired and very tearful this evening. She was asking me why they couldn't save Kay. I have no answers except for the facts.

What to do, what to do? But there's no way out is there? I hate this. I hate sititng here with tears streaming down my face, missing my Kay so badly my heart could burst. I just kissed her photo and I still can't believe that that beautiful face only exists in two dimensions. That the only physical trace of Kay is a bag of ash in a pot. That's what my gorgeous daughter has been reduced to, it's so unfair, unfair.

I feel so alone with these thoughts. And I feel so repelled by this grief. But there's nowhere to go except into it, no ducking, no dodging possible.

I've reached the limits of what I dare write here just now.

Dilemma

I woke up this morning after a disturbed night, feeling rather down: heavy heart, pressure in my chest and generally feeling miserable. Marion & Nattie had gone to hockey early. I went down, opened the curtains and turned the light on over the big photo of Kay in the corner of the lounge. I kissed Kay and stroked her cheek, as I do every morning and night. But today I was immediately hit by a panic attack, don't remember the exact cause. Anyway, so far this has set the tone for the day.

I called Linda and had a chat which brightened me up enough that I felt like continuing with the day, (as always, thanks my dear friend). Since then I've been pottering around doing jobs in the garden and prepping my mountain bike for its first outing of the season. But as I was working thoughts of Kay continued to wash through my head. How she would always wait until the absolute last minute before going to the toilet, to the extent that if she wasn't quite fast enough she occasionally wet herself. She hated wasting a minute of the day and any time on the loo was wasted time. She had the habit of unfastening her trousers on the way to the loo and refastening them on the way back so the whole thing would take less time (a habit of Marion's too!) and she would never fasten the fly of her trousers because she "preferred it that way". These and many other painful/black thoughts queued to cross my mind.

Now, here's the dilemma: does one allow oneself to (repeatedly) think black and/or painful thoughts. Or should one avoid thinking bad things?. For example, there I am working away in the leaf sodden autumn garden when suddenly it strikes me that Kay's seen her last autumn, seen her last leaf fall, raked her last pile of leaves, filled her last wheelbarrow. She's seen her last thunderstorm, she's ridden her mountain bike for the last time, had her last birthday, had her last Christmas... Should I shy away from these thoughts? Or should I let them run their course?

Shying away from them seems to be about as useful as burying CO2: it's (notionally) toxic and it has to come out some time. But maybe not right now, maybe when the world can handle it's CO2 output. On the other hand, by allowing these thoughts to have free rein, I'm allowing myself to be pushed deeper down the black hole of misery and grief. And I certainly don't feel that by allowing them free rein now I'll be better for it in the future. In fact, by allowing them free rein the future seems to be increasingly unattractive, as I wrote on Monday.

What to do? To be honest I don't know. I can try to think about think about other things but the pressure of the grief remains the same and it does feel like sticking my head in the sand. On the other hand, allowing myself to think these thoughts and allowing the repetition feels like I'm permitting myself to revel in grief, encouraging myself to be depressed, engaging in some sort of mental masturbation of misery.

I guess that this is a important subject, the key to healing the Sickness of Grief. But what is wise?

A Surprising Thing

I feel slightly stronger today, with a little more energy. It's a small change but it's the first time in a very long time that I've noticed such a thing. I suspect that the reason is that Marion's Homeopath (English word?) has put us on a high dose of vitamins, particularly vitamin 'C'. Homeopaths are not normally my thing, not since one of them explained to me how diluting a 'medication' repeatedly by a factor of 10 increased its effect with each dilution, etc. For me this kind of thinking is little removed from dancing around the garden naked under a full moon, shaking a stick. The same person used to also talk to vegetables when cutting them on the basis that they became more compliant and cut more easily. Hmmmm.....

Neverthless, in the last years I've had some good experiences with alternative medicine. The physiotherapist that I see occasionally is a fantastic guy who uses a range of conventional and unconventional techniques in a holistic approach towards helping a patient. Some years ago he used accupunture to help me with a nasty stress complaint. Needless to say, I was very skeptical and rather afraid of being stuck like a pig. But the experience fell slightly short of miraculous. Since then I've become a firm believer in accupuncture to the extent that these days I only wince when being jabbed, rather than the full blown screams that I let out the first time. 

I've also suffered from a dodgy knee for years, including two operations. But a couple of years ago when my knee was playing up the same guy diagnosed the problem and fixed it in about 5 minutes. A true genius.

Marion's been pestering me to go and see her Homeopath. I know that the lady helped Marion a lot in the past, but I'd always reckoned that her skills were based on the power of listening and placeboes (listening to Marion for long periods being indeed a wonderous and unconventional skill, ha ha!). But I'm not sure the same cure will work for me, being generally less inclined to talk to strangers than Marion and certainly having a healthy skepticism towards placebo medication. But the vitamin thing and slight improvement in my mental state has made me curious, so I have agreed to go and see her next week.

Maybe I'll yet end up dancing round the garden. But not naked. I'm way too English for that.

Another Day, Another Airport

I guess I'm a slow learner. In this case I'm learning that airports are not the best place to be if you're feeling tired and depressed: I'm waiting at London Standsted for a flight back to Eindhoven. The place is heaving, I'm surrounded by people who are laughing and enjoying themselves while I feel like the black hole of joy. I guess I must be sucking all the life out of a circular space, or hemisphere, of radius 1.5 metres. All the other tables are full but this is the nearest that anyone is sitting to me. Actually, I must remember this trick in future: how to guarantee personal space in crowded place: look less happy than a Russian (there are miserable looking Russians (i assume from the language) on the nearest occupied table to me, but there are people sitting directly NEXT to them. What a badge of honour that is).

Anyway, my flight has been called so I have to run.

Tired++

I managed to avoid a complete meltdown on Monday, mostly because our GP came around in the evening and I chatted with her for a bit. This seemed to release some of the mounting pressure. Yesterday was almost a normal day, at least for someone in this state.

Today I've woken up feeling extremely tired and with a middeling dizzy headache. I just feel like sitting here with my eyes shut and doing nothing. Unfortunately there are things to do so I'll have to raise myself at some point. Tomorrow I have an interesting meeting in London so I want to make sure that I'm fit for that.

This afternoon we are going to pick up Kay's ashes from the crematorium. Promises to be another difficult and extremely emotional moment. I've been wondering where we can put them at home. The scene out of "Meet the Parents" jumps to mind, so I think we should lock them safely away in a cupboard.

Yesterday Esther passed me a "Thought for the Day" , which has stuck in my head: "Not everything that can be counted counts. Not everything that counts can be counted". This rang with me immediately. I spend a lot of my time trying to make everything countable, I suppose. And as a result I suppose that I could be missing a lot of things that count. Definitely food for thought.

Sea of Emotions

I feel terrible this morning. I'm hoping that writing an entry will take the edge off it because otherwise I feel like I'm not going to get through the day. For the last 24hrs I've been feeling sick to my stomach. The pressure of grief in my chest is enormous and my heart is hammering on the inside of my rib cage. The effort that it takes just to walk around whilst feeling like this is huge. The mental cost even higher. I really have no idea how it is possible to live one's life for an extended period while feeling so awful.

I had a dream last night that I had to bury Kay myself in hole, without a coffin. In contrast, when I'm awake I have an underground feeling that now it's enough, she's been away from home long enough, time to return back to us. The emptiness that she's left behind is too great to cope with. I'm lying in bed here with tears pouring down my face, my breathing coming in lumps. Marion's just given me a kiss & hug but she's got to get Nattie to school. Later this week we have to pick up Kay's ashes, a moment that I'm dreading. On top of all this i have the strongest feeling that something else is going to go wrong, something big, something waiting just round the corner to deal us another mortal blow.

But I've got to pull myself together, there are people depending on me and lying in bed solves nothing.

But I miss Kay so much. I just want to hold her, stroke her hair, hear her laugh and fight her way out of my grip. I want to go back and go things differently. Spend more time with her, read to her more often, cuddle her more tightly, breath in her scent more deeply, feel her warmth more completely. I would do anything for this to be different. I can't bear the thought of having to live the rest of my life with these feelings of emptiness, pain, remorse, longing, injustice.

Today is the first day of the rest of our lives. A day that represents our first move towards reentering everyday life. It's a grey miserable day, no colour, no sun, no warmth, no view, no perspective. A day that accurately reflects aspects of how I feel. I lie here aching with longing, screaming with injustice, weeping with pain and I know that life continues to offer us pleasures, Lauren, Nattie and many other things. But I don't feel strong enough to move from here, to face the months and months of pain ahead, to confront all the aspects of Kay's death in the tiniest details, to absorb all the panic attacks that have yet to come. What life offers us doesn't seem to compensate for what it took away.

Oh, how does one do this? How does one continue to live such a massively compromised, painful existence?

Huge Struggle

We're both struggling mightily this evening. I wanted to read a particular book to Nattie at bedtime, but I couldn't find it in her room. So I braved going into Kay's room to see if it was there. As I opened her various cupboards I was slapped in the face by just how unfinished her life is. There are presents from her last birthday that we'd just starting using, the soap making and perfume making kits that she got. There are presents that have not yet been used and there are some that have not yet been opened, a few folorn packages that will wait forever before they get attention.

What on earth are we ever going to do with her bedroom? The emotional cost of even thinking about it is so gigantically enormous that I can't even conceive of a moment when we will be strong enough to face it. That room on its own represents the challenge of a lifetime. But Fortunately there is no need to face it now. But it does sit there casting a heavy shadow over the future. I know that at some point we are going to have to do something about it.

Back Home

We're back home after a long and tiring drive, yesterday. Thanks goes to Frank for taking the hard way home and splitting the driving with me, I don't think I could have done it in one go on my own.

Back home, it is dark and raining and miserable, a full wet autumn seems to be in progress. Difficult to remember that on Friday we were sitting outside sweating from the direct heat of the sun.

My first impression of being home is that the weight of depression is heavier here. Lying in bed his morning it felt like I was being pressed deeper into the mattress by it. The odd thing is that it almost seems like the extra weight is coming from outside me. I don't feel that I'm any more depressed than in France, but it seems that either the depression that I have weighs more here or that there's an additional external source. Whatever, it's more difficult to 'be' here than in France, though France was difficult enough at times.

And then there's Kay's bedroom. The last time I was here I experienced meltdown #1 by entering her bedroom and lying on her bed. Her door's been shut since we got home and now I almost fear what is behind that door. Everytime I walk past it I get a pulse of pain and fear. I've had more panic attacks since we got home than in the preceding days. So all in all, in the 15 hours that ive been home everything has felt much more difficult. But I still feel the sun in my bones and the pleasure of good company which, as long as it lasts, lightens the sense of depression and the impact of the panic attacks.

Tomorrow I suppose that we have to start the process of re-entering everyday life. Nattie has to go back to school, my work needs attention and I have important meetings to attend. Marion has a backlog of administration. I don't know how hard or easy this will be, I don't feel that I've made much progress towards to goal of being at peace with Kay's death. When I look at all the beautiful photos of her and the girls that I hung up France she seems just as real to me as Lauren or Nattie. It still seems that she will walk in the door laughing at some joke or something that has just happened. It cannot be possible that she is not HERE in the same way as Lauren or Nat.

Sunday mornings Marion and I like to get an occasional lie-in. Kay would always come into our bed early and cuddle up with us (something Nattie never does). But after a while of wriggling and chatting we'd throw her out so that we could enjoy some peace. She would stomp out of our bedroom, head back, shoulders back, long hair trailing down her back, under huge protest and complaining that we just wanted her out so we could "do some sexing".

Oh how I miss her. My pictures cry out to me that she should be just here. Not gone forever.

Flashback

Being in public for long periods is a challenge. I've mentioned this before but I seem to have forgotten the lesson. Yesterday when I was sitting in the aircraft at Schiphol, waiting to return here, I had a sudden and horrible flashback. I was back in Kay's intensive care room at the moment that she died.

I had a vivid and new recollection of how medical support was withdrawn from her and how this led to her death.

I remembered one doctor increasing the dose of coma medication to ensure that Kay was adequately sedated for what was to come.

I remembered how immediately after this life support from the ventilation equipment was decreased by the lead doctor, leading to Kay passing away.

I remembered being apecifically aware of the first step, I watched the doctor do it.

I remembered how I'd chosen to have my back to the life support monitors so that I could not see how her life signs faded away.

I remembered that the doctors had shut off all the alarms from the monitors so that we would not be frightened by them.

I remembered silence from the equipment at some point and looking up to meet the lead doctor's eyes and asking her if Kay had passed and the doctor affirming that she had.

I remembered thanking her and asking her to thank the rest of the ic staff.

I remembered then holding on to Lauren and dissolving.

I remembered all this while sitting in seat 4A of an largely full aircraft, surrounded by strangers. And I struggled hugely to control myself, not to suddenly burst into tears in front of all these people. It was very difficult but I must say that I used my iPad to deflect and distract me from these terrible thoughts. Playing Angry Birds for a little while, watching a couple of episodes of House, though this now brings with it it's own set of Kay related problems.

It had never occurred to me before that I could be sitting next to someone on a plane who was fighting off tears because they had just lost someone dear to them. If you think about it and then look around at the strangers that surround you on the train or plane, you cannot but see them in a whole new light. Could this business man here, with his laptop, iPad, iPhone and headset be on the point of dissolving into a puddle of salty water? Could his heart weigh as much as a Neutron Star? Could he not care less if the plane should crash and he die on impact?

There's obviously much more diversity immediately around us than I'd even started to consider.

Home

Just to close the story: home 12:30am

******** French Air Traffic Controllers

NNNOOOOOO! My flight has been delayed from 20:30 to 21:45. Arrrrggggghhhhhhh!

Addendum

Made it! Huge queue at security but I found my first use for my KLM Elite card: the priority channel at security. I'm sure I would have missed the flight otherwise. But the the flight is shown as being delayed by 15 mins, so who knows?

I have to say that it's just as well that passengers don't have to be weighed before they fly. My heavy heart would almost certainly mean that I'd be overweight.

The Reverse Midas Touch

Actually this entry has not a lot to do with Kay but I writing it to illustrate something. I haven't quite decided what yet, but maybe it will come to me as I write. Today I had a couple of important appointments at the office. Important enough for me to break off my holiday and travel from Provence to Eindhoven by way of Marseille and Amsterdam. In order to to this I had to catch a 6:55am flight out of Marseille which meant getting up at 4:15am. The return flight is at 20:30 this evening.

Now France is a mess at the moment. 2/3 of our local fuel stations are closed and I was concerned about a) a very long day and b) leaving enough fuel in our car. So I decided to get a taxi. He arrived at 5am and estimated the taxi fare to be Eur 150-, I had Eur 250 cash. Heading towards Marseille we hit a problem: the motorway was closed, diversion via Aix. Add 25km and extra time. At Aix, the taxi fare reached 180,- so I got out my iPhone and checked the remaining distance using TomTom, 25km. I estimated the fare to come out at 230,-. Then the driver missed the turn off for the direct motorway to the airport in spite of the fact that I told him that my nav system said go right. He went into the centre of Marseille and the proceeded to get lost. I ended up giving him instructions from TomTom.

So we arrived at the airport at 6:10 (!) with the meter reading 280,- (!!!). I paid him 230, and ran. But he'd dropped me at the wrong terminal so I had to run further than I expected. I just made the gate on time for boarding when I saw that the flight was delayed. Still, they boarded it on time, a puzzle. But when we were all seated the pilot announced that the French air traffic controllers were striking and that the flight was delayed by an hour. Whoopee.

Eventually we arrived at Schiphol 45mins late. Due to huge queues for tickets I missed the first train to Eindhoven. The second arrived 10 mins late and then, due to "trains in front", drove most of the way to Eindhoven at a crawl. I ended up arriving at the office 70mins late for my first meeting.

Now on the way back. But again, due to slow traffic in Eindhoven I missed my chosen train to Schiphol and am now sitting here on the following train worrying about missing the return flight. It's in 2 hours. In theory the train should take another 40 mins, then security, then Schiphol is a big place... It's going to be tight.

I hope that the return flight is not delayed. Or should I hope that it is?

At least all this travel hassle is taking my mind off Kay. By this measure I suppose I should be pleased with the distraction. But on the other hand it does feel like everything I turn my hand to at the moment turns to s**t. But then I shouldn't be so self indulgent, if that's the word I'm looking for.

Frank called to tell me that everyone is sitting on the terrace enjoying another glorious sunset. "How fine to know, my dear friend", I replied. Or words to that effect.

Growing Collection

Yesterday can be added to my growing collection of very bad days. In fact it was one of the worst so far. I hope there are fewer of these days in front of me than behind. Like Kay, I feel that every attack leaves me weaker and less able to respond to the next one. Later in the evening I infected Marion, so there were two of us in a bad way. Fortunately Nattie stuck her head round the door and asked if she could bring us something, "Room Service!" she announced with a smile. Such sweetness was enough incentive for us to pull ourselves together. Bless her.

No more Kay Cuddles

I've been struggling with another build up of grief the last 24hrs or so. This morning when I came down I looked at Kay's photo and had an overwhelming need to put my arms around her and give her a hug. And then I was hit by the obvious and I could feel the hug vacuum between my arms and my heart, the cuddle-hole that can never be filled. I turned away but the feeling has left me deeper in grief and depression, the stupid realisation that there are no more Kay cuddles in this world.

So after breakfast, feeling worse and worse, I asked Nattie if she had a cuddle for me. The only thing she had in store was a quick, cursory hug and then she had to go back to playing Sims 3. And rather than help this made me feel worse.

So I've borrowed Marion's shoulder for a bit and I'm now a few tears lighter, which hopefully will compensate for the rich French breakfast we just had. But still I feel so so extremely low and miserable. I just want to curl up under the covers and wish this Kayless world away.

Where is Kay?

I'm struggling to find things to write about, not because of a shortage of material but because I'm boiling over with so many and diverse conflicting emotions and thoughts. Last night when we went to bed Marion had a major meltdown. She so wants to touch Kay and feel her body, she regrets not spending the last night with her (I dragged her away because she was exhausted and all advice that I got was to make sure the Marion got some rest), but perhaps mostly she wants to know where Kay is now.

This is a subject that I'm finding very hard to resolve in my mind. I have not had the clear sense of communication with Kay that I had during the week or so after her passing. I still have a sense of her presence and I still feel her warmth and love. I vaguely hear her talking to me, reassuring me. But equally I cannot be sure that these feelings are real. For instance I only hear/feel Kay when I think about hearing/feeling her. As yet I've not had spontaneous awareness of her presence.

Part of my mind sees my sense of Kay's presence as a symptom of deep grief, of my mind manufacturing comfort, supported by the fact that I only have this sense when I think about it. But what if this is not the case? It is surely more comforting to accept these feelings as some kind of reality, to believe in the metaphysical. But my problem is, essentially, that I’m not easily a believer. So I’m torn in an extremely painful way: if I dismiss the metaphysical I’m left with the terrible, terrible thought that there’s nothing left of Kay, that her last moments of consciousness, which she spent in anger and fear, were truly it. That everything after that was nothing at all.

There’s a lot of common sense and supporting evidence for this point of view. It’s Occam’s Razor to the max. But it is also the most utterly painful and nihilist view of Kay’s death. That there’s really nothing more than I perceived. That every time I kissed her, stroked her hair, held her hand, that she was effectively already gone, unreachable to me. That her continuing presence is nothing more than a sop invented by my subconscious to help me get through the day.

I really find this nihilist view so so so very difficult to swallow. But the alternative seems to go against my nature, to simply believe in something for which I have no evidence. The only evidence I can find for the alternate explanation, that Kay’s soul is loving us and looking after us, is that I feel better when I think such thoughts.

Fact is that “life is hard and then you die”, a point of view that seems to neatly summarize our experiences to date. In this context we end up back by Occam’s Razor again: there’s nothing, Kay is gone forever in every possible way.

I wrote this recently to Esther, Kay's child psychologist and our fantastic and loving guide through her last weeks. Esther basically replied that there's far more to life than we can know, that we simply do not have the tools or ability to probe these subjects in a quantitative way. She repeated something that I really like, "Feelings are Facts too" and therefore encouraged me to treat my sense of Kay's presence as if it were in fact real because firstly there's no separating one view from another and because it is indeed what I felt. Plus, my own thinking leads me to reason that if the nihilist view is indeed the 'real' one, then there's no harm in accepting the idea that Kay's with me. Whereas the opposite view, that Kay is here and I deny it, is harmful to me in the sense that it will take me down a longer and more painful road to recovery than otherwise would be the case. So the conclusion is that the best thing to do is to accept my experience of Kay's presence as reality and whether that's a nihilist manufactured reality or a metaphysical reality is by-the-way.

I guess the danger lies in what one does when one reaches the conclusion that our children have souls and that they stay with us when they die. I don't plan to do much more than accept that as the way things are. I don't necessarily see it as leading to the conclusion that there's a god, especially after all the other counter experiences that we've had. If I were to conjecture I guess that I'd say about as far as one could go is to imagine a sea of souls with perhaps a distributed hive intelligence. That would match my experiences to date: no single divine consciousness (with throne, beard and penchant for the concept of "glory" and virgin birth), just a collective mind that behaves in ways that an individual mind can't understand.

Still, all this intellectualizing really doesn't contribute too much right now, except perhaps to point the way forward. Right now I remain in a state of shock and denial. Here's an example: yesterday as I was framing a photo of Kay I noticed that there is some light lens flare on the print, partly over her head and face. My thought was, "Oh I'll just reshoot it when the sun's out again". Then the next second, BANG, the hit of electric shock across my chest as a realised that that's not possible. Then BANG as I realized for the first time that my photo collection of Kay is complete, finished, never to be added to again.

Repeatedly I suffer the shock of realizing that Kay's life ended in terror and pain, without us having been able to say goodbye, without the last kiss or last hug. Denial because I don’t want to accept that she has become a memory, that my photo collection of her is final and complete. That my only route to her is through metaphysical terrain.

So, my conclusion is that I/we have not moved on very much in our weeks here. And I cannot imagine how long it’s going to take before I/we move on from this phase and how much pain we have yet to feel before we start to feel less.

Staying up late

It's difficult to write at the moment, my mind is a storm of emotions that I'm trying to control by avoiding. Otherwise I'll spend too much of my time here in sorrow and not enjoying or at least appreciating the good things around me.

Natasha has been going to bed pretty late since we've been here, 10pm or so. Normally I'd be pushing for her to be in bed at a more normal time but I find myself looking for reasons to keep her up a little longer: "if you sit on my knee quietly for a bit you can stay up a little longer". Hmmmm... To whose benefit is this now?

I realise that every minute we have with our children is precious and thus synchronising our sleeping patterns is a good way to maximise that enjoyment, those golden seconds. They are gone way too quickly, prematurely in Kay's case. And we can never know if or when that will happen.

Kay burns in our minds. I completed putting up new photos of the girls, of Kay today. This has been a real labour of love and enormous pain. But necessary. Kay is now all around us here. Confrontational, but also beautiful. It makes her presence more present, if you follow my meaning.

Marion is lying in bed next to me and is struggling with tears. I need to give her some support, but it's so difficult to face her pain whne I'm overflowing with my own. Nevertheless...

Natasha

I think that we're very fortunate with Natasha. She has always been a self contained child, able to play on her own for long periods. She has a very active imagination, which also keeps her very busy. I was very concerned that when we came here she would be lost in some way without Kay, her life long playmate.

But my worries have so far not been founded. She's constantly busy with something. She is either reading (Kay's backlog of Donald Duck comics), playing on my iPad or on the PC. She has been in the pool for quite long periods almost everyday. She & I have been doing maths exercises on the iPad and I have to say that the child has a mind like a calculator, she's occasionallly faster than me with division and getting faster all the time.

Her active imagination has led her to design a complete entertainment complex that when she gets older she intends to build. This complex started with a shop, "Nattie Fashion", and got extended to a resturant, fun park and geld-pakhuis (money warehouse). She's got all the details worked out and is working on drawing a site plan. She's even promised that Marion & I will be able to visit for a discounted rate - not free mind you.

But all this is not to say that she doesn't miss Kay. I configured a new account for her on the PC here and the first thing that she did was access Flickr and download a photo of Kay and set it as her screen background and login icon (I didn't even know that she knew how to do this!). She talks about Kay in quite a normal way, more normal than I can manage at least. She was extremely pleased when I hung a photo of Kay above her bed here. Once, before we came away, Marion told me that she found Nattie cuddling her huge teddy bear and when Marion asked, she said that she was missing Kay.

She's also able to comfort Marion & I in indirect ways. We don't confront her with our tears, but she knows that we're upset every now and again and, in her own way, she'll come a give one of us a cuddle. Last night the three of us curled up on the sofa here in front of one of Marion's favourite films, Notting Hill. It was lovely, Marion snuggled up on my left, Nattie lying on my chest to the right. Both Nattie & I feel asleep during the film, Nattie was well gone. It was so very nice to feel her body pressed against me, warm, deeply asleep, the smell of her hair. Something that I did with Kay so very many times during the last year.

I think that of all of us, Nattie has the most balanced atttitude so far. She knows that Kay is gone and seems to accept it. She is able to talk about Kay and refer to memories of her. But her life goes on and she's filling it in perfectly without her big sister and playmate.

I only wish Lauren, Marion & I were doing quite so well.

Can't say anything

I had plans to write all sorts of things on the blog today. But both Marion and I are having a very bad day, we're both either on the edge of tears or in tears. We're being confronted with memories and discovering that we're not really up to them. I'd ordered a bunch of photos of Kay/the girls to hang up here. We bought some frames for them today and this afternoon i started matching photos to frames to wall spaces, with Marion's help. But we're not strong enough, the pain of looking at these beautiful photos is just too much.

I'm also concerned that I'm just going to start repeating myself on the blog. My thoughts are going round and round, revisiting the same themes over and over and it all aims to be getting worse and worse.

That's enough for now.

Natasha is Kept Busy

We have friends staying with us for a few days so I haven't had chance to update the blog. But I thought that I'd quickly post a few photos showing Nattie have a lot of fun playing Monopoly with Joost.