Friday 31 December 2010

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...

Thursday 30 December 2010

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.

Monday 27 December 2010

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.

Friday 24 December 2010

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.

Tuesday 21 December 2010

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.

Sunday 19 December 2010

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.

Tuesday 14 December 2010

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.

Monday 13 December 2010

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.

Saturday 11 December 2010

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.

Wednesday 8 December 2010

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.   

Monday 6 December 2010

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.

Sunday 5 December 2010

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.