Monday 17 September 2007

Fish Out Of Water

Little Fish was a fish in water this morning, swimming merrily at hydrotherapy. One very happy Little Fish. She is not going to be anywhere near as happy from now on though. The childcare arrangements I had ready for next week have just fallen through, meaning that she's now going to be ferried to us in hospital first thing in the morning (about an hour before she'd usually wake up) and be ferried home later (for her) at night to try to settle without me before repeating the process every day for ten days in a row. Marvellous.

Mog also enjoyed her swim. Just as well, since it'll be the last one she has for a couple of months now. She's going to be a fish out of water for a very long time - not just no actual water, no swimming, no bathing, no showering for six weeks, but also no bouncing, no standing, no being jiggled and tickled and instead being held rigid and immobile. Not looking forwards to that.

This morning I had an exciting envelope in the post. Cardboard backed, I thought a friend had sent me some photos. Instead, it was three death certificates for Goldy. Thanks, world.


Sunday 16 September 2007

Oh where and oh where did Tia go?

Sometimes, life hates me. I don't think I have done anything particularly awful - fair enough, I haven't necessarily done anything particularly wonderful either, but there comes a time when there is surely enough going on in life already. And then, wham!, more gets piled on. I can't remember who it was who said the right question was not "why me" but "why not me" when this all happens, but I'm pretty sure I could justify an exemption on the grounds of my plate already being dangerously overfull. Big problem? No not really, my internet connection collapsed on me and it's taken until tonight to get it back together again. Even now I'm not sure what worked to fix it; I turned on the computer to get Trina's email address since from the other side of the pond I'm sure I appeared to vanish without trace, and lo and behold instead of an email address my connection was back and I managed to have a conversation instead! Woohooo!

Plenty more elbow polishing going on at church and elsewhere. You know what? If I back away from you don't keep chasing me; I keep ending up being trapped in a corner. If I'm moving away from you then please think about what you're saying to me. Support is great - reminding me of how horribly my daughter must have suffered is less helpful.

Meanwhile Little Fish has been perfecting the art of using her powerchair. I say using rather than driving advisedly; I don't call it driving when you use the chair to power through the wall rather than the door, or to take the sliding door off the hinges. Fun times. Tantrums yesterday because I decided she WOULD learn to drive it so made her sit in it and left her to it. Tantrums today because I decided that despite the fact she was now loving to drive it, she would probably not be most welcome at creche as a toddler in a poorly controlled tank. The thought did entertain me, especially when coupled with visions of the little angels in creche who specialise in pulling out Little Fish's feeding tube in the interests of exploration...

Now I have to try to organise ourselves for a fortnight away. Mog has surgery on Friday, we'll be in hospital for ten days (2 different hospitals), then on to our children's hospice to recuperate. Little Fish is going to have to divide her time between hospital and my parents, who she has now taken to calling Gaggy and Daddy. Makes me smile anyway.

This week we have appointments Monday, Tuesday, Wednesday and Thursday before heading for hospital on Thursday afternoon. I'm not sure what my internet access is going to be like. Please forgive the less than scintillating post, I wanted to update people as quickly as possible.

Take care

Sunday 9 September 2007

Dusty Elbows

People, I have something to share with you all. Apparently, my elbows have been getting dusty. I have to admit, I am clearly a very poor housekeeper and body-maintainer, since I had absolutely no idea that elbows were capable of trapping so much dust. They didn't look all that dusty to me either, not before I left the house this morning. But they must have picked up a large pile of particularly sticky dust at some point between leaving the house and landing at church. Perhaps it was whilst steering Mog and Little Fish into the holly bush covered in nettles safely through the narrow bit of the footpath and into under the railings. Whenever it happened, the fact was that by the time we got to church my ams were apparently covered in dust, albeit not dust I could see for myself. It's the only possible explanation. Why else would half the members of the congregation come up and polish my arms? Not saying anything, but a deep searching sympathetic wry grin, and a quick elbow polish, then move on. It's an Anglican thing. We're too reserved to hug spontaneously (and quite right too!), a quick polish, remove all that dust, and job done, we can all go back to the important things in life like making sure the coffee is just the right shade of grey and that all the biscuits have just one small corner broken off (thus ensuring that all the children will stir the plate vigorously in the quest for the perfect, unbroken biscuit. This biscuit is a myth).

What is it about grief which makes my body public property? If people weren't polishing my elbows they were gently prodding the small of my back. Combine the poking and the polishing with the panicked small child wheeling herself around my knees and it was not a restful cup of coffee...

Good service though. I wouldn't like people to think I only go for the body maintenance, it's nice to have a bit of soul improvement too. The church here is gearing itself up for a big Alpha event. That's a US link but I can't get any of the closer to home ones to work.

First day of school for the little ones tomorrow. I must sleep.

Friday 7 September 2007

Bring on the rain

How do I answer? Someone asked me today how many children I have. I don't know what to say. Do I tell her about the two I have at home, do I go into long details about my missing third, what do I say? How do I answer? From now on, the world is divided into before and after, people who know, and people who don't. People who knew my daughter and people who didn't. No one I meet from now on will ever be able to get to know my daughter; she'll be a photo on the wall and a "oh that's sad" and that's all.

I'm walking down the road and it's a beautiful day and the birds are singing and the sky is blue, the flowers in the gardens are at their very best, bumblebees are buzzing merrily and children are playing games. How can this be? Where is the blasted heath, where is the storm and the wind and the rain and the floods? How are there so many people all around? Where is my desolation, my isolation, my separation? Woven in and anchored too firmly in living. I cut my hand on Thursday, when my child was still alive. And now it's nearly healed. How can it heal? How can my skin be mending, knitting together, how can this go on? Chances are there won't even be a scar, that this perfect miracle of regrowth will play its part in my life - and if so, how did it bypass my daughter?


Tuesday 4 September 2007

Power Child

In one tiny corner of this universe, life has stopped. But children don't have a pause button or an off switch, as far as they are concerned the world keeps turning and they keep going.

Little Fish has been lent a powerchair on trial to see if she can get to grips with it. She's a whizz in her manual but because she's so tiny the powers that be would like her to have a power chair to save her muscles - she is after all going to be pushing herself around for quite a long life. We hope.

So yesterday afternoon, the wheelchair therapist arrived bringing whizzy new purple tank (and forgetting cushions and charger but hey ho). Little Fish has tried this chair out before, at the hospital. Because she's never walked, the concepts involved in moving forwards and backwards aren't things she is particularly clued in with. She knows how to push herself in her manual wheelchair but that's not the same as walking and that's not the same as pushing the joystick. So, she has everything reversed. Very clear that she understands the concept "I wiggle this stick and something happens" but beyond that - she is consistent, but consistently wrong. She pulls the stick backwards when she wants to go forwards, forwards when she wants to go backwards, left for right and right for left. This makes for an interesting time. Small child wants a cuddle from Mummy, and finds herself backing into the bookcase instead. Small child wants to go to the kitchen and finds herself running over my laptop (I'm being charitable here and trying hard to believe it wasn't a deliberate attempt to stop Mummy from spending so much time online). Small child hits object and panics, locking her hand around the joystick and not managing to let go.

I'm having to think about so many different things. Different ways of directing her. "Stop" isn't helpful because it causes her to pull her hand back, sending her into reverse. Whilst this might be useful on the occasions when she's actually run over my feet in the forwards position it's far more likely I'm trying to stop her from running Mog over behind her. The therapist suggests "Let Go" as an alternative. OK this works. Except that now I can't use "Let's go" as a means of getting started. Well - I can, but when I do Little Fish gives me the cross eyed "oh mother make your mind up" look. Similarly "Come" doesn't work because the sign for "come" is a beckoning motion, so Little Fish tries that whilst holding the joystick, sending her once more whizzing backwards across the room. "Push" and "Pull" are handy and we'll be working on them, but they don't spring naturally to my lips when I want her to move forwards or backwards. I had never appreciated how complex driving a powerchair could be - and how much of our language can be so confusing.

Taking pity on my furniture and doorways I decided we should go outside. Being either thoughtless or stupid (or possibly both) I thought a quick trip to the shops might be a good expedition. Someone tell me why because I really can't remember what made me think it might be a good idea. I mean, I know we needed loo roll but I've got babywipes and boxes of tissues, it wasn't that urgent...

Picture this. I've mentioned the push-one-pull-one shuffle before. Now manoeuvring two girls in two manual wheelchairs with handles at different heights and cambered pavements is tricky enough. I'm now trying to push Mog with one hand whilst guiding Little Fish hand over hand with her joystick in the other, every little jiggle and joggle sends the chair flying in an entirely different direction. Fortunately Little Fish thinks this is hysterically funny. Especially when my hand slips off and she manages to run away, leaving me to abandon Mog and chase after her before she hits parked cars or falls off the kerb. Half tempted to let her hit the cars which are parked across the pavement but suspect this would not be a good way to maintain friendly neighbourhood relationships.

Eventually we make it past the cars and into the park. Fun times. Little Fish begins to get a bit confident now, and starts grabbing my hand then whizzing off in direction unknown, up the grassy banks, over the woodchips, over the paths, into the benches, scattering elderly grandmothers and small children alike, howling with laughter as she goes. Meanwhile Mog sits in her chair with its faulty brake and gently drifts into a downhill circle, grinning to watch me chase her little sister and alternating that grin with her "I can't believe you're doing that and you are nothing to do with me" look. As an alternative to making me scramble over grassy knolls, Little Fish decides to "brum" Mog. This involves coming up behind her, grabbing Mog's handlebars and pushing her backwards and forwards on the spot. In the powerchair however Little Fish is somewhat higher up, and so the handlebars of Mog's chair are now nicely positioned at "poke your eye out" level. Combine this with the fact that we still have not perfected the "STOP!!! er I mean LET GO!!! I mean wait for me ARGH" manoeuvre and it makes for a particularly interesting ride.

It is, naturally, whilst in the midst of all this that people decide it would be a good idea to try to gain my full attention to offer condolences. Don't get me wrong; it's lovely that you're concerned and I thank you. But perhaps when we're all three howling in laughter but at the same time concerned with prevention of imminent and seemingly inevitable injury, then just perhaps this is not the right moment. So if that was you and you didn't catch what I shouted as we sailed past, it was "don't be nice to me" - I can deal with anything but that right now.

It was a good afternoon. I'm not sure the loo-roll shop would agree with that assessment. But we didn't cause any criminal damage, not even any "going to take two shop assistants a very long time to clear up" type damage. Just some minor sending stacks of soft toilet tissue to the floor whilst still giggling uncontrollably type damage. Perhaps the "my condolences" and "if there's anything I can do to help" ladies could just pop round and clear that up for them?


Saturday 1 September 2007

The Long Goodnight.

Today I watched my daughter die. I held her hand, stroked her hair, told her that she was tired and needed to sleep and she should let us do the work and have the worry. I prayed over her with her other family and watched as she just drifted away.

I was with her from the previous morning and I was with her during the day when she appeared to be getting slightly better and I was with her in the evening when it became clear she was exhausted and couldn't do any more and I was with her when she finally went. I held her hand and could feel the exact moment when her body had had enough and stopped trying to heal. I slept for a couple of hours when she was temporarily stable ish (or at least when she was no longer responding but was not going to die for at least another couple of hours), and then I came back and stood by her head and stroked her hair and somehow sang to her and told her to sleep well.

My daughter is dead. Everything I do, say, think, feel, is interrupted by that. It makes no sense - my daughter is dead. How can there be a world that doesn't know her, how can she not be here? How can I still need to eat and drink and move when she doesn't and how can she not?

My daughter is dead.


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