The World According to Kay

Today I started to create a full backup of all my photos, specifically those of Kay. While so doing it occurred to me that I should also download all the photos that Kay had made with her own camera (last year's birthday present). So I did just that and you can but imagine how difficult my afternoon has been as a result.

However, there were some nice pics on Kay's camera so I have made a selection and uploaded them to flickr. You can find Kay's view of the world here.

Er, flickr just hickuped, so I have to check out whether I hit a limit. There should be 66 photos, but at the moment not all have uploaded. I'll have to check it out later, now we're drinking some serious quantities of wine with friends.

[The digital world is truly amazing]

Not much energy to write

I don't feel much like writing at the moment. Nothing seems to be going quite right. I wanted to cycle yesterday to see if I could find Kay, but it was a very grey, wet and miserable day. Was hoping to cycle tomorrow but I don't think I'll find her in the rain that's forecast for the whole day.

Marion got up this morning, moved stuff from A to B for a while and then went back to bed in the guest room, pulled the covers over her head and refused to see or talk to anyone. She emerged in the afternoon and disappeared into the garden, eventually returning looking a little less gloomy.

I don't think I've ever experienced such a feeling of depression and gloominess. Yet still mixed with periodic panic attacks. Marion, in a tearful moment, mentioned something to me this evening that hadn't occurred to me yet and that triggered another instant panic attack. In the meantime I'm lost for words to tell people how I am, to comfort Marion, to comfort myself. Everything has been said, every word used to exhaustion. And still none of it is enough.

The image popped into my mind that this situation is like one of those Christmas scenes in a glass bubble that you can shake up to generate a snow storm. Mostly the grief feels like it's just settled on top of me in a big thick blanket, generating a feeling of depression and misery. But every now and again something happens to shake it up and it flies around causing a storm of pain and tears. And it definitely feels like a closed system, none of the snow able to leak away.

I'd better stop writing like this, otherwise you'll all be throwing yourselves off the nearest tall building.

The First Day of the Rest of Our Lives

And so we begin a new age, one in which Kay is merely a memory, a presence in my head. An age in which we can't hug her or hear her or see her or feel her warmth or join in her laughter. A worse age. One that has a hole in it. One in which we reference Kay in the past tense. One that exists in the shadow of a finer age when we were a complete family, when strangers didn't start off a conversation by saying "my condolances".

But I don't suppose that we're doing so badly for day one on our own, although the atmosphere in the house is somber, depressed and emptier than it should be. I have been to the office for a few hours and discovered that I can still think, even if slowly and ponderously. Marion has been busy round the house and is functioning, to an extent. There's enough going on at the office for my interest to be peaked even through the thick cloud of grief and misery that is wrapped round my soul and mind.

Lauren has been doing whatever it is that teenage girls do in their bedroom all day. "Tidying up" is what she calls it, but there's no noticable difference in the quality of the fetid squalor that she inhabits. We have provisionally agreed that I'll take Lauren back to school on Sunday, which seems to be Ok with her.

Nattie is her usual cheerful and busy self. The only thing that I noticed this morning when I stuck my head in her bedroom was that she was playing the Jan Smit song, "Leef" that was a favourite of Kay. "Silent waters run deep" with Natasha, so we'll have to keep an eye on her. However, on Saturday at the end, she cried her heart out to the extent that I had to carry her from the crematorium. I see this as healthy and an indication that possibly of all of us Natasha is most clearly walking a path that will lead her out of all this grief and pain.

The weekend has provided me with an echo of strength and peace, a pointer towards a place where I might yet find the feelings themselves. So much love and support around us. A feeling that we have done our best for Kay right until the last moment of her physical presence on this Earth.

And yet, I miss her so, so very much.

The Day

If it hadn't been my child that we were cremating I would have found the day singularly beautiful. So many wonderful people, +/-500 at the hockey pitch, so many beautiful words and songs, so much love and support.

We were carried on a raft of support built by our family and friends. We were able to give ourselves over to celebrating Kay's life knowing that we had a safety cushion of care around us.

I don't have words enough to say how grateful we are to everyone whom came, to everyone who sent their wishes, to everyone who supported us, to everyone who hugged and held us.

And now it's a new day, the day after, a day when we have to starting thinking about how to remodel our lives around the gaping hole in our family.

Marion's still sleeping, holding Mickey in a vice-like grip, not wanting to wake up and face the day, I suspect. And I too am terrified by what comes next.

HELP!

The end of the last day is drawing near and I just don't want tomorrow to come. I have a raging sense of panic, pain, fear and some unknown and indescribable feelings coursing through my body. Oh, this can't be my life. Oh, this must be happening to someone else. Oh, please please please let me wake up from this nightmare.

Why my Kay? What did she ever do to deserve this ending? What did we ever do to deserve this life? Better it was my ending and Kay's life.

Oh, oh, oh... don't let this happen. Let me wake up tomorrow and find Kay playing on her computer, chiding me for being a worrying Daddy. Let me put my arms around her and hold her close and feel her warm and life. Let her struggle against my hugs and push me away because she has something more important to do.

No, this can't be my reality. It just can't. It can't be.

Oh my Kay. Ah, words are not enough. Nothing ever will be.

I want my Kay, so very very very very much.

What a morning

I've been behind the computer all morning, discussing and editing texts for the service tomorrow, selecting music for the various steps along the way and blowing & labelling CD's from iTunes playlists. 

A specialist photographer has also been along to make some photos of Kay with Marion, Nattie and I. Marion & Nattie were OK with this, I was half OK with it and Lauren didn't want to be on a photo. All fine by me. I'm very scared about refusing to do something and then regretting it later, but equally nor do I want to fill my head with things I'd rather not see/forget.

This afternoon I have to go to the school to arrange the photo display and work out a couple of other things. More guests will be arriving so the house will be nice and full this evening, people sleeping on camp beds even.

Marion's Aunt & Uncle are being complete saints with the way that they are working quietly in the background to run the house and support us. They are the silent heros of this situation. And then there's all the support we're getting from friends, which seems to know no bounds. We will eventually be extremely grateful for these things, acts of love which will last a lifetime.

"Your friends
will know you better
in the first minute you meet
than
your acquaintances
will know you in
a thousand years"

"Illusions", Richard Bach.

Indeed, I'm falling back to some of the most beautiful books I've ever read.

Busy with terrible decisions and pleasant company

A friend just called, concerned that I'd not updated the blog today. Another thing to add to the huge heap of care we're getting.

Today my family has arrived from the UK so we have been busy on that front. Other lovely and most welcome visitors have dropped by and numerous other things have been going on.

But every day we have to make terrible decisions, things that you never want to think about in your life. And Marion, who draws a lot of comfort from the fact that she can still see and touch Kay, is increasingly facing the realisation that that will end on Saturday.

So things continue to get harder and harder.

Saturday

We will commemorate Kay's life on Saturday 25th September in the assembly hall of Kay's school, De Muzenberg, Kijkakkers in Maarheeze starting at 12pm. Following this we will move to the Hockey field on the Philipsweg in Maarheeze, where we will say a final goodbye to Kay on the centre spot. Kay's family and relations will then escort her to the crematorium in Heeze.

If you would like to attend, please bring a purple flower for Kay. You will have the chance to place this flower next to her at the Hockey field. Should you be moved to do more than this, we will have collection pots for the Ronald McDonald house in Nijmegen available.

[You have no idea how painful it is to write these kinds of things].

The Thoughts of Chairman Howe

Ok, what I'm going to write next is rather kooky to say the least. Before I write there are some caveats to worth mentioning. Yes, I'm in an extremely distressed state, but No, I don't think I've lost my mind or suddenly gone bonkers. Further, if anything, what we're going through has made me even more cynical towards the "metaphysical" world, in all its glory. I've spent every minute of the last few weeks making sure that I didn't start manufacturing information from noise, because let's face it, when you have been through what we have been through in the last weeks, your mind grasps at any straw going, even ones manufactured from noise.

But nevertheless, I've heard Kay speaking to me.

On Monday I went out in the sun and the wind on my race bike to feel life around me and to feel me body moving and to try and find some peace from the rhythm of cycling. And after about 20mins I found that peace. My grief subsided and I felt the joy of the sun, the wind and the motion of my bike. And then I suddenly heard Kay, she was laughing at me and calling "Daddy" over and over again. She was dancing in light and radiated happiness. And I felt her love for us.

Now, I didn't actually hear her with my ears, more like hearing someone else's thoughts in my head. But neither did I have the idea that I was manufacturing the information. What I was hearing felt real, very specific even. She's in the right hand side of my head, in the area above and behind my right ear and the stronger her 'signal' becomes the more I feel her in the right side of my head.

Indeed I tried to dismiss all this as the fabrication of an exhausted and grief stricken mind. But you know, I want to hear so much that I couldn't push her away just because my rational mind wanted to dismiss what I was experiencing as a byproduct of my grief. What if it really is Kay? Think what you want, I know what I think.

Today I went on my bike again, this time with some expectation. Another sunny, lovely day full of life. Again, but with more trouble this time, I managed to enter a meditative state, the warmth of the sun, the coolness of the wind, the motion of cycling. And Kay was there again. This time I was not going to dismiss her. I listened to her. She can see into our hearts, she can see how much we love her, she can see how much we're hurting but she sees through it (and is a little impatient). She 'said' that Mama's so sad she can't hear her (Kay).

When I got back I told Marion that the only reason she can't hear Kay is because she's hurting so much. So hopefully Kay will reach Marion soon and we can share the feeling of her being with us.

Unfortunately, I cant keep up this kind of mediation for very long, not least because I'll end up riding into something. And when I stopped, the grief swept back in.

So, you can decide whether I've now gone completely round the bend or whether I'm being incredibly stupid. Or whether my Kay is talking to me.

I'm going cycling again tomorrow.

Weather forecast for today

Bright sunshine and nightmares.

It's the small things...

...I don't need to wash my hands with alcohol after using the toilet anymore.

I have discovered that there are no words that remotely can do justice to the pain I feel. And it just gets worse, every minute, every hour.

Stabbed through the heart

I'm preparing a photo display for Kay's commemoration service at the weekend. But every time I open a picture of her with Lightroom, I get stabbed in the heart. I can't believe she's left us. I can't believe that these pictures are all that I have left of her that my eyes can see.

Oh, oh, this is so unbelievably, indescribably hard.

Kay's body now home

Kay's body has now arrived home and is lying in her bed.

Photos of Kay

You can find (full resolution) photos of Kay here

Formalities

We will celebrate Kay's life on Saturday 25th September. We're still planning but it is pretty certain that the formalities will start around 12:30 in Maarheeze.

Broken Heart

I'm slipping away further and further into grief. Thoughts shoot into my head that pause panic attacks, over and again. I'm terrified about what we have to do this week and the continuing pain that that is going to add. For the first time in my life I don't feel strong enough to do something or face what has to be done.

Proof of the Nonexistance of God?

I've had a terrible day. The details are not relevant, but suffice it to say that shit seems to be piling up on top of shit. That Kay's situation is so bad I would have thought it should be enough trouble for any mortal soul. But I seem to be being targetted by some kind of black hole of misery. Independently of each other, two other problems have arisen. The synchronicity is absolutely unbelievable, I simply cannot get my head around the idea that so many things can go wrong at the same time.

I'd thought for sometime now that Kay's illness is evidence of the mindlessness of the universe. There's no logic to it, there's no rhyme or reason, there's just bad luck. Like most things that happen to people, this is just the expression of statistics. People get cancer, kids get cancer, some of them get leukemia, some of them get cured, some of them relapse, some of those that relapse get cured and some don't. A few end up in comas in intensive care. It's just statistics at work, no master plan, no creator fooling with our lives. There's no lesson in it except that shit happens, in reality as well as statistically.

But the events of today have begun to stretch this explanation. In Hitch Hikers Guide to the Galaxy, Douglas Adams introduced the Babelfish - a creature that once introduced into your ear would translate any spoken language directly into brainwaves, thereby allowing you to understand anything spoken to you in any language. It was argued that the existance of the Babelfish was evidence of the nonexistance of God. The reasoning went like this: "I refuse to prove that I exist", says God, "Because proof denies faith and without faith I am nothing". "Ah", says Man, "The Babelfish actually proves that you exist and therefore, by your own reasoning, you don't. QED".

The combination of recent events seems to me to be so bizarre, so fringe, so statistically unlikely and so personally targetted that either I'm a statistical freek or that I'm getting some very personal and unpleasant attention by some divinity. Perhaps in the future they'll open an anti-Lourdres in my name - come and visit and have your life turned to shit, your good health reversed. In fact, I'm starting to think that the Babelfish argument applies: I'm so blatently being "Job-ed" that this can only be evidence for the non-existance of God.

The thing is, I'm not going to give up. It's not worthing giving up. We've come so damn far, we've been through so much, we're never going to quit because that would be too easy, the cowards way out.

So, do your worst, you divine bastard. If this is how you treat people, if this is how your expect us to live our lives, then I don't want to know you. You're not fit to be a God. And by revealing your hand in this way, you vanish in a puff of logic anyway.

Who stands for my Kay? Who takes her side? Who biases the roll of the dice in her favour? That's someone I'd like to meet, some being with compassion, some being who looks at my daughter and values her strength, her fight, her determination. So far it's only been people who have stood for Kay. The medics, our friends and family, strangers with compassion.

If we can be tortured like this, what counter balances that out? And why isn't the counter balance working? Hey, counter balance, I'd trade everything else that's up in the air for Kay's health, do you hear me?

Or does it come down to Occam's Razor: is it statistics and that we're merely extremely unlikely victims of circumstance?

Kay. Darling. Come back.

The Limits of Human Emotions

Yesterday I found myself feeling cheerful. A very strange thing, how can one possibly feel cheerful when the life of one’s child is hanging from a thread? At the time I was walking over to the McD house to move some stuff around and this gave me some time to ponder the subject. It struck me that if one considers that Quality of Life can be measured on a scale of 0 – 10, where 10 represents the very best things that we can experience and 0 the very worst, then the “reach” of human emotions (or maybe just my emotions) is about 3 wide.

In other words, it’s possible to be (very) unhappy while having essentially a very good Quality of Life (“money doesn’t buy happiness”), but equally it’s possible to be cheerful when Quality of Life couldn’t be worse. This theory also explains why it’s so difficult for me to tell people how I feel. In normal life (eg Quality of Life 5), someone might ask how I feel and my reply might be “tired”. But in our current circumstances ( QoL +/- 0), the same word “tired” refers to a depth/sort of tiredness that is entirely other.

I’m not doing a very good job of explaining myself. Let me try to put it differently. In the past I’ve had panic attacks, usually business related, usually at 3am. They tend to feel like being electrocuted by mains voltage and usually the primary effect lasts maybe 5 minutes. I’ve had periods of huge stress that have lasted maybe an hour or so and I’m able to recognize the symptoms. In the last days I’ve had panic attacks and I’ve had periods of huge stress. The thing that I’ve noticed is that the feelings and the effects that go with them are no stronger than in the past when I’ve had them for other reasons. The major difference is the frequency of the attacks, not the intensity. So my conclusion is that, at least as far as stress and panic attacks go, I have reached (and thoroughly explored) the limit of my ability to respond.

But this is not necessarily what I’d expected. With my child on the edge of death I’d expected to feel more intense emotions. With my child on the edge of death, I’d never expected to feel cheerful. And this leads me to conclude that we (or maybe just me) have a quite limited capability to emotionally respond to our circumstances. I’d always thought that our feelings would run proportional to our circumstances so it’s a big surprise to discover that that is not the case. Also, it kind of leads me to feel that I’m short changing Kay, that the fear of losing her is actually not greater than other extreme fears that I’ve had in the past, whilst the circumstances are far worse than anything I’ve ever encountered. But I guess that that’s compensated by the frequency of the panic and stress attacks.

There’re other consequences too. We have been talking quite a bit to the mother of a child who’s in the IC for a serious but not life threatening problem. I have often seen the mother, for whom I have a lot of respect, with tears in her eyes struggling not to breakdown during the last days. I’ve felt quite a few times like pointing out to her that she has no reason to be in tears, her kid is going to be out of here and fine. But of course, while her circumstances are better than ours, she’s at the lower extremity of her emotional response, which puts her into the same bracket as us emotionally whilst being in an entirely different league circumstantially. A damn good reason not to chastise her.

Anyway, Kay’s room is now full of “white people” (Kay's words) who have come to do the procedure on her lungs. I need to pay attention. And I need to be prepared for another round of massive stress and potential panic attacks.