Saturday should have been Kay's 1st second birthday, the first anniversary of her bone marrow transplant. I have been dreading these days, dark times at the height of spring. I was worried about Marion, was worried about how I could support Marion when I was struggling so much myself. I worried about descending into a period of intense grief, of being reminded of so much that we have lost.
But instead we decided to go away for the weekend. Friends have been encouraging us to spend the weekend with them at the campsite where they have a static caravan. This campsite is on the water and is a centre of watersport activities. We hired a caravan near them and took our Laser 2000 sailboat to take advantage of the caravan's situation.
We have had an excellent weekend. The weather was super, the location excellent and the company extremely enjoyable. Although I have had to do a lot of work during the weekend there has still been enough time for relaxation and fun. Sailing with my girls has reminded me of the joys that life still holds. Both Lauren and Nattie were very keen to get on the water and enjoyed crewing the boat. The Laser is a very "tippy" boat and the main job of the crew is to keep it balanced. Lauren is great crew and coached Nattie into the role as well. I was able to concentrate on the helm and mainsail, and together we did well. Today the wind picked up and for a while we were fairly whizzing across the water.
On the water the shadow of Kay fades away somewhat. She didn't like sailing a wet boat. She'd spend the whole time looking over the side of the boat, watching for sharks - literally! We once sailed around the island of Bendor near Bandol, in light winds and on glass clear water. Kay did nothing but sit there looking pensive and asking whether there were sharks in the water. While Kay was many things, she was not a natural small boat sailor, while both Lauren and Nattie are. Marion is like Kay and kept her feet dry for the weekend. But then she has the "advantage" of nearly having drowned while we were sailing the Laser, caught out by rising strong winds in Bandol bay, and has since declined to participate, unsurprisingly.
I need to do things like this more often. The last days sailing has generated some strong, good thoughts and at the end of the day, when trying to sleep, I have been able to think of other things than the challenges of work and the emptiness that Kay has left behind. I'm looking forward to going to bed in a minute and closing my eyes and putting myself back in the boat with Lauren & Nattie, skimming across the water - memories to be treasured.
Monday 25 April 2011
Thursday 21 April 2011
Mickey
It was one year ago yesterday that the Great Mickey Rescue took place. Now Mickey is all we have left. Mickey sleeps in our bed and is our constant companion, even when we travel.
These are very hard, grievous days. The weather, which is the same as it was during the BMT weeks, reminds me of all the hope that we had this time last year. It's hard to resent such beautiful weather, but every time I step outside I'm overwhelmed with the memory of the hope that we had a year ago.
It's natural in such weather to feel one's heart lift with the renewal that spring brings. And when I'm not thinking my heart does lift for a few seconds at a time. Then the worthlessness of all that forlorn hope crashes in and my enjoyment of the weather, of life, vanishes again.
We're having a hard time right now. Tears everyday. My heart weighs as much as a neutron star. The only positive thing that I can think of is that during her life I told Kay often that I love her, I cuddled her frequently. During her sickness, if not before, she could have had no doubt that she was infinitely loved.
But infinite though our love maybe, it feels like it wasn't enough, never will be enough. Our love wasn't enough to save her life, no matter how hard we tried.
Oh my Kay.
These are very hard, grievous days. The weather, which is the same as it was during the BMT weeks, reminds me of all the hope that we had this time last year. It's hard to resent such beautiful weather, but every time I step outside I'm overwhelmed with the memory of the hope that we had a year ago.
It's natural in such weather to feel one's heart lift with the renewal that spring brings. And when I'm not thinking my heart does lift for a few seconds at a time. Then the worthlessness of all that forlorn hope crashes in and my enjoyment of the weather, of life, vanishes again.
We're having a hard time right now. Tears everyday. My heart weighs as much as a neutron star. The only positive thing that I can think of is that during her life I told Kay often that I love her, I cuddled her frequently. During her sickness, if not before, she could have had no doubt that she was infinitely loved.
But infinite though our love maybe, it feels like it wasn't enough, never will be enough. Our love wasn't enough to save her life, no matter how hard we tried.
Oh my Kay.
Saturday 16 April 2011
Foolish
I've been foolish with my life during the last ten years. I'm slowly starting to regret some of the decisions that I made during that period, decisions that now seem foolish, decisions that do not show the diligence due to my/our circumstances. Back then I was lucky, failed to realize it and failed to act accordingly.
For example, after Natasha was born Marion wanted another child. But I had brought three child into the world, two with Marion, and I felt that enough was enough. To me our family felt complete. Dragging around four children seemed rather excessive. Also I have to admit that the circumstances were not good, of course. Kay was facing two years of chemotherapy, which taxed us, Marion mostly, to the limit on occasion. Also it took quite a while for the relationship stress to die down that a child with an acute sickness poses on a couple. And by the time it had died down we were all that much older.
But as I look at things now, not having another child was a big mistake. I never for a single minute thought that we would lose Kay. If you knew Kay, you would recognize what I mean: she was such a solid character, a fixed part of the world, of my world. She was THERE, a positive force in the world. Of course, I knew that leukemia can mean death. But that was for other people, not for Kay, our fighter, our winner. So having another child seemed excessive. Equally, we live in a crowded world and all this "green" thinking led me to feel that three children was my fair quota in this life and that was it. "An heir and a spare", so they say and as far as Marion & I went, this is what we had.
But now the "Heir and Spare" idea seems completely facile. We have lost Kay and there's a gaping hole left in our family. Just having Natasha left over from the Howe/van Gaal gene pool seems to be recklessly dangerous, we seem to be way too close to having nothing left at all. Should anything happen to Natasha... the consequences would be inconceivable. Judging by Marion's current state of mind, she would not survive losing Natasha.
This is what I mean by having been foolish, having acted without due diligence. I should have taken into consideration that a child with cancer can die. I should have thought about what would happen should that be the case. I should have understood that for us one child is not enough, that we're going to spend the rest of our lives feeling the horrific gap that Kay has left behind and that in the meantime we've become too old to do anything about it.
This is another aspect of this situation that is sliding into my consciousness like The Subtle Knife, the fact that we have passed into a phase of life where our options are narrowing, where the world is no longer our oyster. I should have realized all those years ago that Marion & I were both on our second chance to build a family and that it was late in the day. I should have realized that we didn't have the time to take the long term view, to see how it went with Kay. If we had lost Kay 10 years ago, the option to do something about it would have been open.
I've started to feel old as this realization sinks in. And foolish for not having thought of it before, for not having had another child to hug and cuddle and love when Nattie is not here.
But I can already anticipate your comments on this subject. And I'm sure that some of you will offer very relevant remarks. But there's another side to this story that is equally, if not more, foolish.
Throughout my life I have always been striving for something, particularly during the last ten years. I have always felt that I had something, a lot in fact, to prove and I have spent most of my life trying to prove it. Every time I accomplished something I spent no time gaining any enjoyment or satisfaction from that thing, I was already moving on to the next thing, the next challenge, the next stage of proof. As a result I have been hurrying through life, without taking in the surroundings, without enjoying the moment, without living in the now.
I even had the biggest indication of success ten years ago when I sold my previous business. But again I didn't truly appreciate that accomplishment for what it was or spend any time doing anything more than accepting it for what it appeared to be. I didn't stop to consider whether it was sufficient, whether I really needed to carry on pushing myself to achieve yet something else. I just moved on to the next challenge that I felt it necessary to pitch myself at.
This has turned out to be a gross kind of foolishness. So many important and precious moments of my life have passed by that can never be recovered, not even by rearguard action. Those moments of Kay's life that I missed are gone forever and there's no more Kay around to me to try and make up for it. Those evenings when I didn't read to her can no longer be recovered, nor the time when I didn't play with her, didn't splash in the pool wit her, didn't hold her, give her a nite nite kiss. The chance to steep my memory in everything about Kay has gone. Those memories that I retain from the last ten years seem so thin, such poor things to represent the life of such a rich child, a beautiful daughter, a precious unique creature that was here and gone in such a short time.
I have been such an idiot. I failed to grok how fortunate I was, how rich was my world, how beautiful my family, my children. I failed to live in the NOW with them, to steep myself in the value of the moment, to wonder at the wonders, the perfect children that my life had produced.
Now I feel like an idiot, a complete fool. I'm not one to live in the past, but I find myself increasingly regretting much of what I have done, at least these last ten years. While I have been striving to prove myself, that proof has been all around me and I have not realized it. The proof was my children, our lives, love.
For example, after Natasha was born Marion wanted another child. But I had brought three child into the world, two with Marion, and I felt that enough was enough. To me our family felt complete. Dragging around four children seemed rather excessive. Also I have to admit that the circumstances were not good, of course. Kay was facing two years of chemotherapy, which taxed us, Marion mostly, to the limit on occasion. Also it took quite a while for the relationship stress to die down that a child with an acute sickness poses on a couple. And by the time it had died down we were all that much older.
But as I look at things now, not having another child was a big mistake. I never for a single minute thought that we would lose Kay. If you knew Kay, you would recognize what I mean: she was such a solid character, a fixed part of the world, of my world. She was THERE, a positive force in the world. Of course, I knew that leukemia can mean death. But that was for other people, not for Kay, our fighter, our winner. So having another child seemed excessive. Equally, we live in a crowded world and all this "green" thinking led me to feel that three children was my fair quota in this life and that was it. "An heir and a spare", so they say and as far as Marion & I went, this is what we had.
But now the "Heir and Spare" idea seems completely facile. We have lost Kay and there's a gaping hole left in our family. Just having Natasha left over from the Howe/van Gaal gene pool seems to be recklessly dangerous, we seem to be way too close to having nothing left at all. Should anything happen to Natasha... the consequences would be inconceivable. Judging by Marion's current state of mind, she would not survive losing Natasha.
This is what I mean by having been foolish, having acted without due diligence. I should have taken into consideration that a child with cancer can die. I should have thought about what would happen should that be the case. I should have understood that for us one child is not enough, that we're going to spend the rest of our lives feeling the horrific gap that Kay has left behind and that in the meantime we've become too old to do anything about it.
This is another aspect of this situation that is sliding into my consciousness like The Subtle Knife, the fact that we have passed into a phase of life where our options are narrowing, where the world is no longer our oyster. I should have realized all those years ago that Marion & I were both on our second chance to build a family and that it was late in the day. I should have realized that we didn't have the time to take the long term view, to see how it went with Kay. If we had lost Kay 10 years ago, the option to do something about it would have been open.
I've started to feel old as this realization sinks in. And foolish for not having thought of it before, for not having had another child to hug and cuddle and love when Nattie is not here.
But I can already anticipate your comments on this subject. And I'm sure that some of you will offer very relevant remarks. But there's another side to this story that is equally, if not more, foolish.
Throughout my life I have always been striving for something, particularly during the last ten years. I have always felt that I had something, a lot in fact, to prove and I have spent most of my life trying to prove it. Every time I accomplished something I spent no time gaining any enjoyment or satisfaction from that thing, I was already moving on to the next thing, the next challenge, the next stage of proof. As a result I have been hurrying through life, without taking in the surroundings, without enjoying the moment, without living in the now.
I even had the biggest indication of success ten years ago when I sold my previous business. But again I didn't truly appreciate that accomplishment for what it was or spend any time doing anything more than accepting it for what it appeared to be. I didn't stop to consider whether it was sufficient, whether I really needed to carry on pushing myself to achieve yet something else. I just moved on to the next challenge that I felt it necessary to pitch myself at.
This has turned out to be a gross kind of foolishness. So many important and precious moments of my life have passed by that can never be recovered, not even by rearguard action. Those moments of Kay's life that I missed are gone forever and there's no more Kay around to me to try and make up for it. Those evenings when I didn't read to her can no longer be recovered, nor the time when I didn't play with her, didn't splash in the pool wit her, didn't hold her, give her a nite nite kiss. The chance to steep my memory in everything about Kay has gone. Those memories that I retain from the last ten years seem so thin, such poor things to represent the life of such a rich child, a beautiful daughter, a precious unique creature that was here and gone in such a short time.
I have been such an idiot. I failed to grok how fortunate I was, how rich was my world, how beautiful my family, my children. I failed to live in the NOW with them, to steep myself in the value of the moment, to wonder at the wonders, the perfect children that my life had produced.
Now I feel like an idiot, a complete fool. I'm not one to live in the past, but I find myself increasingly regretting much of what I have done, at least these last ten years. While I have been striving to prove myself, that proof has been all around me and I have not realized it. The proof was my children, our lives, love.
Wednesday 13 April 2011
Back on the Tablets?
Sunday night was hell. I eventually went to bed around 3am after having dosed in front of the tv and still it took a while to sleep. In the morning I felt so rough that I chose to cycle to the office again to wake my self up. This also helped with reducing the amount of tension that I was feeling. But on Monday evening I took the easy option and swallowed a sleeping tablet an hour before going to bed with the result that I had a good night's sleep.
The result of this was that yesterday I could feel just how deeply tired the last week or so has made me. I really need a good few nights of quality sleep. Yesterday evening I took some advice offered here and stopped drinking green tea n the evening - I normally drink a cup before or at bedtime. I'd always thought that green tea was innocent stuff, didn't realise that it's full of cafeine. But again I wasn't prepared to face another nocturnal battle with myself, so I took a tablet again and had another good night.
So, what to do? I know these tablets build up side effects that the last time were difficult to push through when I wanted to stop taking them. Also they become less effective with constant use. I think that what I'm going to do is taken another one tonight and then leave it through the weekend, ie thursday, Friday and Saturday nights. See if having FHA en the edge of the problem I can sleep without aid.h
The result of this was that yesterday I could feel just how deeply tired the last week or so has made me. I really need a good few nights of quality sleep. Yesterday evening I took some advice offered here and stopped drinking green tea n the evening - I normally drink a cup before or at bedtime. I'd always thought that green tea was innocent stuff, didn't realise that it's full of cafeine. But again I wasn't prepared to face another nocturnal battle with myself, so I took a tablet again and had another good night.
So, what to do? I know these tablets build up side effects that the last time were difficult to push through when I wanted to stop taking them. Also they become less effective with constant use. I think that what I'm going to do is taken another one tonight and then leave it through the weekend, ie thursday, Friday and Saturday nights. See if having FHA en the edge of the problem I can sleep without aid.h
Monday 11 April 2011
Same again
Same problem again, being prevented from sleeping by my heart pounding in my chest. After yesterday's sleeping tablet failure the conclusion is that adrenaline is more powerful than sleep medication. So now I'm trying a different tactic: no tablets, just retired to the lounge, put the TV on and am waiting, hoping for sleep to arrive.
The really annoying thing is that I can't put my finger on the source of the problem. It's not like I'm lying in bed explicitly worrying about stuff. It's more like I've got a stress infection that is triggered by going to bed. I was just dozing a bit when a dog barked outside. My heart jumped at the sound, bounced off the wall of my chest. In fact it reacts to every little unexpected stimulus as an reason to skip a beat. How crazy is that?
This is truly awful and rather scary. I wonder what the hell is going on?
The really annoying thing is that I can't put my finger on the source of the problem. It's not like I'm lying in bed explicitly worrying about stuff. It's more like I've got a stress infection that is triggered by going to bed. I was just dozing a bit when a dog barked outside. My heart jumped at the sound, bounced off the wall of my chest. In fact it reacts to every little unexpected stimulus as an reason to skip a beat. How crazy is that?
This is truly awful and rather scary. I wonder what the hell is going on?
Sunday 10 April 2011
Slippery Slope
Thanks to a tablet, I slept like a log last night. I took the tablet at 10pm while still downstairs and it knocked me out in about 10 minutes. I woke briefly around 11pm and managed to stagger into bed and the next thing I knew it was 7am. Lovely, it's been a while since I had such a restful night.
However, I do not want to take these tablets on a regular basis as they have some pretty nasty side effects with continued use. So this evening I was in bed at 10.30, with some melatonin. You can guess from the time that this blog entry was posted, what happened. I couldn't get to sleep properly. I slithered around on the edge of sleep for a while. I guess that I almost made it but alas fell into a nightmare instead, one that is probably worth mentioning: it seemed that my sister-in-law was pregnant (Yes, Isa!) but caught some kind of bug that meant that she needed a blood transfusion. My brother was on the phone with me as he discovered this and he got very upset and I couldn't understand why until he said that if she had a blood transfusion she would lose the baby.
I 'woke' up at that point, heart pounding and full of stress. It was 12:15am, ie past my midnight threshold, so I thought "to hell with it" and took another full sleeping tablet. It's now 1:30am and this time the damned thing has seemingly had no effect. I lay in bed for an hour waiting for it to cut in but have now given up.
I have to admit that I'm getting very scared by my inability to sleep. Or rather, the thing that scares me is lying in bed in the dark with my heart thumping in my chest, full of stress and unable to relax. What this kind of stress is doing to my body I dread to think. I cycled to work a couple of times last week to try and combat the effects. The strange thing is that I don't seem to suffer from it during the day, only when I'm trying to sleep or when I wake up in the middle of the night. In fact, I've had a relatively quiet day today, just working on Nattie's railway board, cleaning up the garage and enjoying the fine weather. It's only at night the that demons come out to play.
I have to find a solution to this problem as soon as possible. I'm afraid of the consequences for my health and also it makes work that much more difficult, just the extra mental effort it takes to push through a working day after a bad night is hard enough, never mind the mental fog and disorientation that results.
Well, I'll drink a cup of green tea and sit here and hope for sleep. The pounding in my chest has eased somewhat - the effect of writing for the blog? - so maybe I'll get off soon.
However, I do not want to take these tablets on a regular basis as they have some pretty nasty side effects with continued use. So this evening I was in bed at 10.30, with some melatonin. You can guess from the time that this blog entry was posted, what happened. I couldn't get to sleep properly. I slithered around on the edge of sleep for a while. I guess that I almost made it but alas fell into a nightmare instead, one that is probably worth mentioning: it seemed that my sister-in-law was pregnant (Yes, Isa!) but caught some kind of bug that meant that she needed a blood transfusion. My brother was on the phone with me as he discovered this and he got very upset and I couldn't understand why until he said that if she had a blood transfusion she would lose the baby.
I 'woke' up at that point, heart pounding and full of stress. It was 12:15am, ie past my midnight threshold, so I thought "to hell with it" and took another full sleeping tablet. It's now 1:30am and this time the damned thing has seemingly had no effect. I lay in bed for an hour waiting for it to cut in but have now given up.
I have to admit that I'm getting very scared by my inability to sleep. Or rather, the thing that scares me is lying in bed in the dark with my heart thumping in my chest, full of stress and unable to relax. What this kind of stress is doing to my body I dread to think. I cycled to work a couple of times last week to try and combat the effects. The strange thing is that I don't seem to suffer from it during the day, only when I'm trying to sleep or when I wake up in the middle of the night. In fact, I've had a relatively quiet day today, just working on Nattie's railway board, cleaning up the garage and enjoying the fine weather. It's only at night the that demons come out to play.
I have to find a solution to this problem as soon as possible. I'm afraid of the consequences for my health and also it makes work that much more difficult, just the extra mental effort it takes to push through a working day after a bad night is hard enough, never mind the mental fog and disorientation that results.
Well, I'll drink a cup of green tea and sit here and hope for sleep. The pounding in my chest has eased somewhat - the effect of writing for the blog? - so maybe I'll get off soon.
Friday 8 April 2011
Kay is Everywhere
Ah, this is a hard time of the year. Everything new, turning green, full of optimism. And so were we this time last year. But no more. Everywhere I turn at the moment there are memories of Kay, too many to recount. Mostly passing snippets, flashes of memory. The pain of her loss is amplified by the season, by a passing of time that one cannot ignore.
I guess that it's not helped by the fact that, yet again, I'm not sleeping very well. Getting to sleep has been difficult for a while. But this week I have been waking up after a few hours of sleep and have not been able to get to sleep again. I've tried everything I can think of to relax, not nothing seems to work. And the problem is that the harder I work to try and relax, to try and find a way to fall asleep, the harder it seems to be.
Last night took the biscuit: we went out with a group of friends for the evening and ended up getting home at 2am. I seemingly fell asleep pretty quickly but woke up at 3:30am and couldn't get back to sleep (I say "seemingly" because I my mind didn't switch off, I just eventually noticed that 90 mins had passed quickly). I started to get desperate because I had another extremely busy day facing me. At 5am I decided to take half a sleeping tablet, knowing that I would then lose the first half of the morning at least. But this seemed a better alternative than simply continuing to hope for sleep or trying to take on the day after 90mins of rest. Eventually, when the tablet cut in, I got an extra hour or two of rest and crawled out of bed around 9am. I felt absolutely terrible, but it was a beautiful day so I chose to cycle to the office. The exercise and fresh air blew the cobwebs out of my system and I managed to put in a useful 3/4 day. But if I thought it would do any good, I'd starting preying for a normal night's rest.
The homeopath tells me that my problem is that I'm thinking too much, that my mind is way too active. My initial reaction was that thinking is what life is about, not thinking = vegetable. But she recommended a book called "The Power of Now". To be honest I have reached a point where I'm prepared to grasp at straws to try and find and way to relax, to sleep, to find some peace, so I bought a copy of this book (the Kindle is so very cool) and I have started reading it. I have read about 20% so far, but it does seem to be a remarkable text. The "problem description" matches almost exactly with what I'm experiencing. However the solution that is proposed - switching off one's "thinking" by concentrating on the now - is as understandable to me as colour to a blind man. I'll have to carry on reading the book to see if there's further enlightenment, so far my attempts to put the principles into practice have failed miserably.
Tonight I think I'm going to take the easy option and take a whole sleeping tablet. I really need to get at least one good night's sleep after such an insomnious week.
Friday 1 April 2011
Halcyon Days
We're entering into a difficult period right now as it was a year ago that we went into hospital, full of hope, to start Kay's bone marrow transplant. I remember that when we entered her hospital room for the first time, there were no leaves on the trees in the park opposite and during the six weeks that she was there, the trees went from bare to full bloom. We watched birds build nests and raise chicks with my binoculars and everything went so well that we were sure that, yet again, Kay was going to come out of a major procedure a complete winner, our winner.
I dare not go back and read my blog from that period – in fact a dare not go back and read my blog at all – because even though we knew that the BMT was a life threatening procedure, we had no idea what was coming our way. Relatively speaking the BMT days were halcyon days.
Today, the pain that we feel from the loss of Kay knows no bounds. I'm just getting along with what I have to do, but I'm fortunate in that what I have to do is also something I find interesting and challenging. Alas, Marion is less able to deflect herself from her grief and is struggling to find some kind, any kind, of equilibrium. It will be a very long time before either of us will be able to think about being more than incidentally happy again, I suspect.
Oh how much I wish it were otherwise. How much I wish I could give Kay a cuddle right now.
I wonder if there's some parallel dimension, some alternate reality where there's a Rob sitting cuddling a Kay, remembering the trees and the birds and the BMT, remembering Kay singing her Justin Bieber song, survivors of the fight against leukemia? If so, I wish with all my heart I were him, he doesn't have a clue just how fortunate he is.
I dare not go back and read my blog from that period – in fact a dare not go back and read my blog at all – because even though we knew that the BMT was a life threatening procedure, we had no idea what was coming our way. Relatively speaking the BMT days were halcyon days.
Today, the pain that we feel from the loss of Kay knows no bounds. I'm just getting along with what I have to do, but I'm fortunate in that what I have to do is also something I find interesting and challenging. Alas, Marion is less able to deflect herself from her grief and is struggling to find some kind, any kind, of equilibrium. It will be a very long time before either of us will be able to think about being more than incidentally happy again, I suspect.
Oh how much I wish it were otherwise. How much I wish I could give Kay a cuddle right now.
I wonder if there's some parallel dimension, some alternate reality where there's a Rob sitting cuddling a Kay, remembering the trees and the birds and the BMT, remembering Kay singing her Justin Bieber song, survivors of the fight against leukemia? If so, I wish with all my heart I were him, he doesn't have a clue just how fortunate he is.
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