Thursday, 30 January 2014

do you mind?

This morning I went for a check up with the psychiatric people, to see how I'm getting on. The general answer is 'much better', because I have finally sorted out a working balance between medication; lots of practical help and support from family, friends and professionals; and a terrifying grip on routine that is most unlike us as a family*.

That's good. It's all good. However, we got to kicking around the fact that as things progress and become more complicated with Nenna, more weights are going to be stacked on the 'heavy' side of the scales.

I really want to find a way to maintain this tentative steady place I am in without actually lacing myself any further past the eyeballs with tranquillisers. In case, you know, there's an unforeseen apocalyptic event that means I can no longer get prescription medication. Or something. It just seems to make sense that although the squeeze on my available headspace can be counteracted with chemicals, if I can get my brain to feel unsqueezed all by itself, that would be a Good Thing.

On the basis of that, I'm going to give 'Mindfulness' a whirl and see if it helps. I've done quite a bit of meditation in the past and found it helpful; but I just can't manage that at the moment. I've found a couple of little podcasts that I am hoping I can focus on for a few minutes each day and we will see how it goes.

Good new that has happened today: Motobility are giving us a grant for a wheelchair friendly vehicle. This will make travel much easier for all of us - no hauling Nenna between the ground and the car seat repetitively and all that stuff. She can just whizz in in her wheelchair have her wheels locked down, then whizz out the other end. And there will be lots of room for the electric wheelchair, the walker and all her other bits and bobs. And maybe room for pants as well if we want to go on holiday. It looks as if we may end up with a minibus-sized vehicle and if we do, we will be selling our beloved camper. So if anyone is interested in a four berth Renault Trafic AS with a woodburner and a composting toilet, please do drop me an email before we pop it on eBay! I will miss it; but with off the road, it means we can go down to one car.

For today, that is all.

* Any comments about how organised you find us generally would be good. Really. And if you could cc them to my mother, that would be absolutely fab.

Monday, 27 January 2014

100 words for shit

I never really knew whether that whole thing about eskimos was apocryphal (don't spoil it all by telling me now) but it did point something important out to me early on: different spheres of life need their own language. In many ways, in my old life as a techie in the theatre, it was something I understood intrinsically (loads of thingamabobs need lots of words to describe them). But its only leaving that world has made me understand quite how sweary techies are. When there are a 10000 different types of arcane cock-up waiting for you at work every day, there are necessarily 10000 different words and phrases to describe them. But here's the rub. One word has crossed over into my new life as a carer. Shit. 

It only comes up because of that age-old social interaction, thus -

Them: How are you?
You: ...

Seems like a deceptively simple question, but before you answer it you need to grade the person who's asked. Are they:

a) being polite and don't *really* want to know = response 'fine thanks'
b) know you a bit better, but don't have time/inclination to hear = response 'shit'
c) know you well and are genuinely asking = response 'this may take some time'

And it led me to thinking, in category b) above that one word just isn't useful enough to describe all the things that go on in our life now. 

What is the word for: I'm too tired to move any more but I've got to? The S word covers that, but not specifically.
What about: Basically fine, but my whole head is occupied fretting about the many possible diagnostic futures, all of which will be - you guessed it - shit.
And here's a new one, and what brought me to this post in the first place: what do you call the feeling that goes with being in the position of 'decider' for someone who can't make an informed decision themselves, about something that's elective, will be painful and involve a general anasthetic but the person you're deciding for is completely fine about it because they trust you intrinsically?
Guilt doesn't nearly cover it. Pathos, not really. I bet the Germans have got a word for it.

Tell you what though. Shit doesn't come close.

Thursday, 23 January 2014

how much is enough?

Genetics just called.

There are a couple of other things they want to test for; Russell-Silver Syndrome and Smith-Lemil-Opitz Syndrome.

It seems like they are clutching at straws now. One can be done on stored blood, the other needs to be fresh; but they can take it when they knock her out in a couple of months time to change the PEG feeding tube to a button.

Apparently the talk about referring her to Guys is because they are particularly good at neuromuscular stuff.

At what point do we say 'no, this is enough'? At what point do we let it go and just accept that it is what it is?

I do appreciate that I may look back at all of this, all of my writing about it, and realise that I have been having a fully fledged breakdown about it, publicly and with imperfect sentence structure. I can't keep it inside me though.

The professionals, the hospice people, the nurses, the consultants, they keep saying 'some parents like to know, some don't want to know'. I can't imagine not wanting to know. I don't have that level of living in the now. But then, I think, IS it living in the now? Or is it putting their heads in the sand? 

I want to know how long we've got her for. I want to be able to see it coming. I want to know how it's going to play out. I want to know what I'm going to have to put her through, what I'm going to have to put myself through; and then just bloody well get on with it and somehow let all this anger and terror go and just live for the moment.

On a slightly lighter note, B left the wheelchair in the car-park at the hospital earlier this week. Just loaded her in the car then drove away. I've made a note, it's going in my sit-com and none of you can steal it.


Last night B and I both went to the Writers Anon meeting in Taunton. It's the first time for ages that we have gone to the group and although it's a slightly bizarre form of 'date night', it works for us.

We both read stuff out and got very constructive feedback; and heard some really good pieces from very talented writers. When I come back from the evening I usually have a lot of ideas bobbing round in my brain that I can get out on paper in the few days afterwards before my momentum runs out.

Which is what I should be doing now.

Tuesday, 21 January 2014

of stars and splints

Nenna woke me at quarter to one, needing turning and her night splints taking off*. I haven't been able to go back to sleep.

I've been lying in bed for a couple of hours with my mind wandering and thinking middle-of-the-night sort of thoughts - how I need to put straw down in the Barnevelders' pen to stop their feet getting muddy and fouling the eggs; wondering whether I can vent-sex day-old ducks; how much of a fuss we're going to have to make to get school kick started with tube-feeding training; how long it will take for the appointment to come through to change the PEG to a button; how to effectively mince a rabbit; that kind of thing.

And then I got to the point where I was lying with my eyes open looking out of the window at the stars that catch in the branches of the apple tree; and thinking that really, nothing ever changes. Everyone feels like this sometimes.

In my teens and early twenties I memorised a metric shed-load of Elizabethan poetry. Just because I could, really. And one of my favourite poets is Thomas Wyatt. He was supposed to have been in love with Ann Bolyen**. What's resonating with me at the moment is his sonnet 'The pillar perished is whereto I leant'. He is supposed to have written it after he witnessed the beheading of his friend Thomas Cromwell - another casualty of Henry VIII.

In these dark reaches of the night, I sometimes feel as if I have nothing and no-one at all to lean on and I have no idea where I am going.

I remind myself that I don't have to actually find a grand unified solution to it all; that B is here and is taking a lot of the strain; that I can just shut the door, pull the sofa close to the fire, take a breath and relax. In a way, sometimes, it's so much easier to be tied up inside your own head than to choose a task to start. The fear and the lethargy go hand in hand.

I keep going back to the best bit of advice I have ever been given***: Just get started. And then you'll feel better about it.

I keep telling myself that. And I keep telling myself that however lonely I feel, I am not alone; there is a support network there for us.

I am picking my way along tonight, trying to find my way out of this funk I have got myself in to. Just rambling, really. But it's brought me to John Donne:
No man is an island, entire of itself,
Every man is a piece of the continent, a part of the main.
If a clod be washed away by the sea, Europe is the less
As well as if a promontory were,
As well as if a manor of thy friend's or of thine own were:
Any man's death diminishes me, because I am involved in mankind,
And therefore never send to know for whom the bell tolls;
It tolls for thee. 
It's not about the destination, I don't think. It's about the journey and who you travel with. 

* I need to phone the physio in the morning and tell her that one of them is rubbing her ankle - not good.

** After she married, Wyatt was accused by Henry of having a post-marital affair with Ann and imprisoned in the tower. The general feeling is that if he really was guilty, Henry would have offed him as well. Whatever he actually did, though, he definitely thought he was in love with her. One of his most famous poems is 'Whoso list to hunt, I know where is an hind' about her throwing him over for Henry - not that she had much option, really. 

*** Mr Wade, 1989, Geography A-Level revision

Friday, 10 January 2014

in which I am Vivien Leigh

Rabbit mating appears to have been acheived. Repeat, rabbit mating has happened. And no jumper washing was required.

Mating success in rabbits is measured by whether the boy rabbit falls off the top of the girl rabbit on to his side and squeaks. Insert your own joke about ex-boyfriends here. Believe me, I did*. Henry gets a second go at perfecting his technique tomorrow, when Mrs Rabbit The Second gets popped in with him. This should mean that we have baby rabbits in a month, spaced a couple of days apart - they will be close enough in age to foster each others kits if that is necessary.

I am hoping that if I wean them at five weeks I will be able to get another litter in that will be ready to kill at the Downsizer Skillshare at the end of August**. It will be a tight-run thing, as the does really need a bit of a rest after weaning to get their condition back, but I am already planning on how to keep condition on them a bit better this time as they are feeding, so I will just have to play it by ear.

I have chosen to breed a cross between Californian and New Zealand White. Picture the Mad Killer Rabbit from Monty Python and The Holy Grail and you'll be on the right track - and therefore the babies grow quite quickly. I prefer the look of the Californians, with the black ears and noses; but the NZs seem to fill out more quickly. The cross is supposed to give you the best of both worlds - the long back of one breed and the broad frame of the other; but I haven't yet butchered any, so I am waiting to see what happens. My first litter should be ready to go in another couple of weeks.

Today's child-related trauma was a phone call with Frenchay talking about referring Nenna to either Guys or Great Ormond Street. I am so frantic that I can't begin to even process the information, so I'm not going to say any more about it. I've got a 'Beginners Chicken Keeping' course tomorrow morning, so I need to keep my game-face on until after lunch and I will think about it then. I realise that makes me Scarlett O'Hara and therefore Arvo is Rhett Butler.  Allegedly, Clarke Gable hated Vivien Leigh so much that he chewed raw onion before each of their kissing scenes.

I have no idea where I'm going with this, so best just leave it there.

* if you are one of my ex-boyfriends reading this, I didn't mean you.
** We are having a Rabbit-Themed Weekend at the end of August, exchanging practical skills like how to prepare them for food and tan the skins, if anyone reading this isn't a member of the forum and fancies coming along. All welcome. Bring your own tent and a cake.

Wednesday, 8 January 2014

things i would like to know

I was going to do a light-hearted post about 'things I would like to know'. But actually, it turns out that the main thing I'd like to know is why this is all so bloody hard.

We went to Bristol today to see the Respiratory Consultant, who has booked another sleep study and wants them moved biannually rather than annually.  He did a lot of explaining about night-time respiratory support - it is possible she will need it, if not now, in the future. This included a deeply upsetting conversation about how it's cruel to put children with a short predicted lifespan through the trauma of a tracheal breathing tube - six months in hospital - if they are not going to survive that long. This is not currently on the table for Nenna, they would be looking at CPAP or similar.  

We then got home to find two emails from the SENCO faffing about taking her swimming and riding. It seems like such a small thing to ask them to sort out in the scheme of the things we are having to deal with; and they are now in the fourth month of not doing it. 

So that's that, pretty much.

In other news, Leo has taken to praying in the bath. I have no idea where this has come from. My requests for divine intervention tend to be of the 'pray when my arse is on fire and try to remember to say thanks when fire is extinguished' type. He was in the middle of a long, involved monologue last night that I thought was directed at me and when I asked him to repeat himself he yelled 'I AM TALKING TO GOD, NOT TO YOU, MUMMY'. Which would have been fine, only his entire conversation with the Almighty was also conducted fortissimo. 

Tomorrow, I am going to put thirty duck eggs in the incubator and mate two rabbits. I may write about that. I may not. Last time I tried it, I ended up with rabbit spaff all over my jumper and it was all very unromantic.

Some of this I have cut-and-pasted from a facebook status update. I'm out of the habit of blogging and it all feels very clunky and not-quite-flowing. 

For today, that is all.

Sunday, 5 January 2014


Henry, the large buck rabbit, was banished outside again yesterday, after his presence triggered a cross-species non-consensual sex act between Bungo the lop-eared rabbit and Fred the long-haired guinea-pig. Fred was too traumatised to give verbal evidence, but his hair was really mussed up and he was slightly damp and shaken. Bungo can look as smug as he likes; I have found him a new home with a lady who has lots of guinea-pig free space and he's going this week, when I have time to take him over there.

Henry liked being inside and having the run of the house; but he left a trail of small rabbit currants behind him and picking them up got old really quickly. So he's back in his two-story outside cage where he can see who's coming and going through the gate.

In other news, I have wired the wii controller nunchucks to the mains to provide an escalating scale of electric shocks when the children don't give up their turns if the buzzer goes off. I reckon it's good parenting in the long run, because it's teaching them to share.

I have shoes and pizza planned for tomorrow. B's taken the Christmas decorations down and hoovered up the pine needles whilst supervising mini-Ninjas. I've fiddled around online and done electronic housekeeping.

Days until term starts: 1.5

Saturday, 4 January 2014

first post of a bold new era

Well, hello world. As is traditional.

Everything from this point backwards is imported.  Everything from this point forwards is new, shiny and what-not.