Monday 28 February 2011

Angry

I was just listening to an old song by New Order, "If Jesus comes to take your hand, I won't let go, I won't let go". It made me so angry with this God character. Did Jesus come and take Kay's hand? Did I let go? If there is a damned god then I hate him for taking my Kay. So there better not be a god, for his own good!

Now I'm listening to "Boy's don't cry" and I'm trying to follow the instructions.

Sunday 27 February 2011

For those who want to know

The homeopathic tablets that I'm taking are called "Caffea Cruda", for anyone who wants to know. And I still think that they are helping me, certainly I have been able to fall asleep more easily the last nights. Last night I woke up around 2:30 and worried about sleeping again. I had a lot of muscle ache from a busy day working on building Nattie's model railway board so I took some paracetamol. My mind was still running and, as far as I can tell, continued to run for the rest of the night. But I did manage to get some rest.

I have a feeling that I might have rounded a corner as far as tiredness and sleep problems go. The combination of going to bed very early and the said tablets seems to be having a positive effect, in other words I'm certainly not getting more tired and I even have the idea that I'm starting to win back some ground. But I should not get ahead of myself, when I wake in the morning it's still with a head that spins from fatigue.

As the days get lighter and we're outdoors more often, the pain of Kay's absence is amplified. Kay was always outdoors, whenever the weather allowed, and I keep running into memories of her doing all sorts of things. 

Oh I miss her so much.

Under construction: Nattie's Model Railway Board

Work in progress: folded away but needing extra support

Wednesday 23 February 2011

Homeopathy Again

I got to work around 11:30 on Monday morning, eventually. I was as zonked as one might expect for the rest of the day, but yeh, I did what I needed to do. On Monday evening I was in bed at 10:30 and yesterday the whole family was in bed at 9:30. I fell sleep fairly rapidly and therein lies a tail.

Last week the homeopath gave me some tablets to help me fall asleep. I think that I've mentioned before that I pay as much notice to what the Homeopath gives me as I would do to something from a GP. In other words I just took the tablets, one per day for three days, the last on Friday, and that was it. However, on Saturday it occurred to me that I'd actually had less problems getting to sleep during the previous days. Then on Sunday morning I noticed that again I'd fallen asleep relatively easily on Saturday evening and I wondered about the effect of the homeopathic tablets. Equally, on Monday I wondered if Sunday night's crash had come about because the effect of the tablets had worn off. I discussed this with the Homeopath yesterday and she said that one often has to fiddle around to get the right dosage. So she gave me a different dosage yesterday and has ordered a form that I can take daily. And guess what, last night it was easier to get to sleep.

I'm definitely starting to think that there's something to this homeopathy business, at least in the way that this lady goes about it. It doesn't seem to be particularly "whacky" to me, at least as far as it's gone (and without thinking about theoretical dilution problems) and I do seem to have had some benefit from it. However, yesterday she introduced me to some kind of "tapping" exercises that are supposed to relieve various sorts of symptoms and I found that this pushed the credibility limits with me. I guess that it will take me a while before I'm ready to consider the more tangential treatments that homeopathy offers.

It will be interesting to see how easily I get to sleep tonight...

Monday 21 February 2011

Can't Sleep!!!

Oh man, this is turning out to be a terrible night, I just can't sleep. Im exhausted, I want nothing more than to drift away but for some reason I can't. I started to fall asleep around 11pm, but was disturbed a couple of times by nothing much. After the second disturbance I was awake and that was it. I tried to sleep until 12:15, then I took a sleep inducing tablet. This had no effect. Around 1am I started getting a headache and I was already uncomfortable, my body aching from tiredness. So I took. Couple of paracetamol, a trick that has often helped me to sleep in the past. But again, no effect.

At 2am I started getting desperate. Marion woke briefly and persuaded me to take half a proper sleeping tablet, which I have done. It's now 2:30 and so far no effect. I'm lying here wide awake, extremely tired and very worried. I have a full day at the office later, but I guess that there's now no chance of me being able to do it, I'll be lucky if I can save the afternoon.

My mind is so active, in overdrive, and my heart is beating in my chest like it used to when as a child I woke early on Christmas morning, like something exciting is about to happen. It's ridiculous but I do not seem to have any control over either thing. Try as I might I can't stop my mind jumping around like a kangaroo on speed. It's like a badly filmed pop concert where the picture constantly flicks from one angle to another without giving you any time to absorb the picture. I've been thinking about cycling, about work, about summer holiday, about Nattie's operation, about Lauren's schooling, about finding a new MTB route, about flights to Lefkas, about a friend's house that got hit by a large rock, about not having phoned my friends in the US for a while, etc, etc. I've also got a song constantly playing in my head, "Love changes everything", which I suppose I must have picked up from the radio this afternoon. Gee, it's real noisy in my head.

Now 2:50 and no sign of the tablet cutting in. My heart is still thumping hard, but not particularly fast. I'm wondering what the hell to do next. I'm managing to keep thoughts of Kay a arm's length but I don't know how long I'll be able to keep that up. Marion is fast asleep, her deep regular breathing making me very envious.

I suppose that I'll just have to try reading for a bit and see what happens. Wish me luck...

Sunday 20 February 2011

Other people's writings

I love reading, but sometimes reading doesn't love me. When things are really bad, I lose the ability to read and then I miss reading so much that I try hard to regain it. And so for a while now I have stuck with books that are easy to read, meaning that there's a story that's more gripping than the effort it costs to read. 

I also should say that normally I'm absolutely loath not to finish a book that I've started: experience states that pretty much every book has a redeeming feature, with the exception of "A Winter's Tale", which was so bad that I reckon it was written by a computer. But in recent times I have increasingly found myself abandoning books that require some kind of mental effort to read, an admission that leaves me feeling shamed. A poor state of affairs.

In the course of the last year I have burnt through all of the "Myron Bolitar" books by Harlan Coben, stories that are easy and fun to read, and cost little mental effort. Last week I read his book, "Gone for Good". On the one hand this novel fits the mould perfectly, but on the other it dealt with a character who had lost someone close to them. Although the book was easy to read, I found myself torn between the excitement of the story and the pain expressed by the lead character. At one point, while thinking about the partner he has lost, he says: "I felt hollow. My insides had been scooped out, and again I was struck with the realization that this pain would be permanent, that I could stall, that I could run around and investigate and dig for some inner truth, but in the end, it would change nothing. My grief would forever be by my side, my constant companion in lieu of ...".

Then again, another character talking about loss: "You can try to move past the pain. You can try to forget and get on with your life. But for [us] forgetting would be too obscene. We couldn't betray [our daughter] like that. The pain may be enormous but how could we go on if we abandoned [her]? She existed. She was real."

Although stated by fictional characters in a novel, feelings like these are impossible to cast as fiction. In fact the latter idea, the idea that moving on is forgetting, is something that hadn't occurred to me so far. But I instantly realized the truth of it. The process of dealing with grief feels like it requires one to forget. For example, I'm most "stable" when I'm busy with work and least stable when my mind has the 'space' to roam. Thus, in effect work is less painful because it involves the least risk of remembrance, ie forgetting is easier. 

Harlan Coben novels are a kind of mental chewing-gum for me. But that is not to dismiss them. I have to say that the finesse with which he described grief in this book was truly amazing, but repelling to me at the same time. 

I guess that what I'm trying to say is that nothing about the process of grieving is simple or easy, that even when one tries to find some kind of mental oblivion in a book or film, life's realities, even fictional realities, have a habit of slapping you in the face.

Thursday 17 February 2011

Mac Distraction

After my last blog post I was pretty much knocked out for two days. Monday and Tuesday last week. I think that these were to two worst days that I have had since Kay died. The memory that triggered it seemed to release a flood of grief in me that overwhelmed me for 48 hours. This is the first time that I've had an attack of intense grief that has lasted for more than a few hours and this caught me unawares. On Monday evening, 24 hours into the attack, I thought that the worst had passed and I fully expected to wake up on Tuesday restored back to whatever semblance of equilibrium that I'd previously had. 

But Tuesday turned out to be worse. At some point Marion decided that I needed to be outside - it was a sunny afternoon - and she put me in a garden chair, wrapped up in coats and blankets like an old man. This seemed to help turn the tide. Marion also arranged for me to see the homeopath that evening, who gave me something to improve my state of mind. However it came about, on Wednesday I was fit enough to return to work. But the effect on my agenda of losing two days of work was major and I have been playing catch-up ever since. So this is my first excuse for not having updated the blog in more than a week. 

My second excuse is rather more pathetic, but quite good: I finally gave in to various social and business pressures and bought myself a MacBook Pro last week. I got it on Thursday and since then have been spending my evenings trying to forget that Windows ever existed. I have to say that I think that it's a brilliant piece of equipment, probably the best laptop that I've ever had, though if Sony got their act together they could give the Mac a run for the money. But of course it's the software that makes the Mac so enjoyable to use. Anyway, I could bore you all evening with Mac vs Windows comparisons, which is not really the purpose of this column.

I think that it's now clear that grief is not linear process. I suspect that my way of dealing with it is to bottle it up for a while and then get overwhelmed by the accumulation. Marion seems to be more constant in her dealings with grief, more constantly upset or close to being upset. Marion tends to confront all things Kay, while I tend to avoid them. For example Marion is in and out of Kay's bedroom, while I've not been in there for weeks. Marion say nite-note to both girls every night, while I avoid thinking about the subject. I have no idea which approach is 'best', if there is such a thing, but it wouldn't surprise me if Marion's approach leads to her finding peace with the subject sooner than mine. Marion is confronting Kay's absence while I'm tending towards avoiding it and ultimately I don't think its something that can be avoided. So I suspect that there will be more moments that accumulated grief ends up laying me low.

Again I'd like to think everyone who contributes to this blog for their support. It has yet again been good to know that we're not alone with our fight to survive these most difficult of times. 

Monday 7 February 2011

Painful Memories (Not for the faint-hearted)

I've been felled by grevious outbreak of grief. It started yesterday evening when I was sitting in the car on the way home from friends. I was dozing on the passenger seat when I was hit by a flashback so vivid that it's almost impossibly painful to recount. I used to tease Kay, right up until she became sick, by picking her up with one of my arms under her knees and the other behind her neck. I'd then bring her knees up to her chest so that I held her tight in a ball. I'd then rock her from side to side and say "Ahhh, Baby Kay". Or I'd sing "Rock-a-bye Baby" and at the end, when the bough breaks, dump her on the sofa.

She thought this was either a big pain in the ass, (Baby Kay version) or big fun (dumping on the sofa version). Either way we would have a big laugh. It always struck me when I picked her up like this how beautifully light she was. Long limbs, long hair and light weight. The figure of an athlete. Her hair amazed me, thick, red, long, gorgeous. It was always a wonder to me that I could possibly have been a part of bringing this beautiful and spirited child into the world. She'd fight me when I did the Baby Kay version, yelling "Daaadddddeeee" in her typically modulated way. "Put me down". So different from Lauren or Nattie.

Ahhh, the pain. At home I went into complete meltdown and I've been there ever since. I had a terrible night, couldn't get to sleep. And when I did I had horrible dreams. I woke this morning feeling more tired and depressed than for a while. I'm hovering on the edge of tears, over the edge right now. The loss of Kay is weighing more heavily on my heart. I'm so tired and depressed that I've taken the day off work, unlike me. But I just don't feel like doing anything except trying to sleep a bit and lie here trying to find a place for these incredibly painful but important memories.

Oh man, this is so hard. I MISS MY KAY so, so, so, so much. Where is she? Why has she gone from me? Why did such a wonderful, beautiful, girl have to leave this world? Why has my heart been broken so badly?

I can't see the screen properly anymore through this veil of tears. And my heart hurts so much that it feels like it can't possibly continue to beat. I wish there was some way to forego this pain, I can't imagine how it's possible to keep going, living like this, there can really be nothing worse.

Thursday 3 February 2011

Looking for the positive

I think that its only fair that I try to balance my writing with some positive things. There are positive things albeit few and far between. Nattie's smile. Lauren's big-girl hugs. Laughing with friends. And there are positive thoughts.

The most positive thing that I can think of is the care and affection that we received from the hospital staff during Kay's illness. I consider myself very fortunate that I carry no anger or feelings of recrimination for what happened to Kay. I know that we received the best care that the staff knew how to give and for that I will always be grateful.

This is not to say that I accept that what happened was the only possible outcome. In fact I think that Kay's death was not inevitable. Certainly I believe that her nutrition was poorly managed and I also think that the hygiene rules and policy were far to liberal. When I think of how we struggled with her vomiting, sometimes having to have her nasogastric tube fitted 2, 3 or even 4 times in a day, at home, I'm still stunned that we were allowed to continue to nurse her at home under those conditions. I'm still amazed that I was ultimately responsible for causing a solution to her dietary problem to be found, which led to her nutrition becoming stable. I think that a significant component of her deterioration was due to months of poor nutrition and I also believe that this ultimately contributed to her death. Her poor body was simply emptied of the resources it needed to continue the fight.

But I also recognise that we were at the cutting edge of medical technology, a place where things are less than perfect and that, hopefully, the specialists can learn from what happened to Kay and ensure that the next child gets better nutrition, is not sent home so quickly, is not left at home without adequate medical supervision/advice, is subjected to stricter hygiene rules. If that child had been Kay, I think she would be alive now.

Equally, I would do things differently. I would have followed my instincts and insisted that she stay in hospital at the end of the BMT until her weight loss had been solved/stabilised. I would not have allowed (so many) visitors. I would have been quicker to take her back to hospital when she was vomiting so much. I would have made much more fuss about her nutrition, I knew all along that it was a subject of vital importance, I even discussed its importance with the specialists.

But still, I am at peace with all this for I know that everyone involved did their very best for us. I know that they pulled every trick out of the cupboard, they explored off-the-beaten track ideas for treatment, certainly during her time in intensive care. I know this because I know that they saw how dedicated we were to Kay, how much we love her, how we would have moved heaven & earth to save her and thus I know that this is what they tried to do for us.

There's not much else positive that I can think of. Life weighs heavily from minute to minute. We do laugh, we do smile, we do enjoy our children. But the tone of our lives has been altered. It's been blended with a heavy dose of grief that taints every moment. The minutes that bind the events in our lives together are not enjoyable.

Oh dear. I'm trying to be positive and look where I ended up. And even my positive thoughts are cast negatively. I so long for the days when I took happiness and a good night's sleep for granted. I wonder if they will ever come round again? Well, certainly not the "take for granted" bit, but it would be so nice to wake up one morning feeling refreshed after a good sleep and look forward to leading a generally happy day. The problem is that I cannot imagine ever being able to feel like that again. I imagine that every minute that remains of my life will be weighed down by sadness, by loss, by the ache of missing my KayKay.

Tuesday 1 February 2011

The seconds tick by

I've been extremely busy during the last weeks, a lot of work, a lot of pressure. The consequence, for better or worse, is that a lot of seconds have been filled with work thoughts and therefore not with Kay thoughts. I'm not sure whether that's a good or bad thing. If accused of losing myself in work I'd have a job defending myself. But it doesn't feel like losing myself in work because, well, I'd rather not be working so much.

I've been spending a lot of time with Nattie. I hope that I'm not overcompensating for losing Kay, but again, it doesn't feel like it. Actually it feels like something that I've spent the last ten years not doing enough of: bedtime reading, extra maths, mountain biking, building a model railway board together with Nat. When Kay was alive there was always time to do these things in the future and no need to do them now. Now that she's gone there doesn't seem to be enough time to do them now or ever. Nattie is growing up too quickly and Lauren is almost there already. It feels like the silences in our house are going to get longer way too quickly, silences that never should have been there in the place, at least not at this stage in our lives.

This is something that Marion & I feel greatly: too much quiet. Nattie was away overnight two weekends ago and we both felt lost in a house empty of children. Before, on the odd occasion that both Kay & Nat were away we never thought about the quiet. We had the comfort of knowing that they would be back soon. But the loss of Kay seems to have taken that comfort away. Every minute that Nattie and Lauren are away is a minute of our lives that it lost to emptiness.

I'd resolved to try and write something of a more upbeat message today. But somehow, as I write, I find my mind travelling down these somber paths. The pain of losing Kay is not less, the implications are just as great as they were on the 19th September. She's everywhere and nowhere at all. Her pictures surround us, Marion wishes her night-night, her bedroom is waiting for her, I kiss her photo twice a day. I don't know how we live with it, but to an extent it seems that we do. Oh, how much it wish things were different.