We’ve only just begun

If the title of this post brings to mind the airy optimism of the Carpenter’s song about the rosy beginning of a romance, think again. It’s about Brexit! In fact it would be more analogous to Karen Carpenter’s first diet that would lead inexorably to her eventual tragic death from anorexia.

If you are fed up with Brexit, and I imagine many of us are, we should bear in mind that this really has only just begun. Because, unless we simply revoke Article 50, every other outcome means we have years of negotiations ahead of us. And judging by the three years of negotiations that we have already been through, it ain’t going to be pretty and it will be divisive in an already divided nation.

Like most people, I find it almost impossible to keep up. I am writing this bit as I wait for my bus on the morning of Thursday 28th March (and this bit on my way home!). I have already listened to two podcasts about Brexit that are already out of date as they speculate about which alternative Parliament would vote for (Spoiler alert: they voted against them all!) Yesterday we had what should have been momentous occasions, Theresa May announced that she would resign once her deal got through and parliament “took back control” by voting against any of the potential alternatives to May’s deal. (Note from the evening: I have now listened to two more podcasts that are also out of date by the time they come out.)

So we had the spectre of a Prime Minister promising to fall on her sword if she is successful in doing literally the one thing she has attempted to do in her time in office. Presumably this also means that if she fails to do that one thing, she will stay on. This is mad – you succeed – you leave, you fail – you stay. This is, remember, after not once, but twice being on the receiving end of record-breaking defeats, the likes of which would have meant a Prime Ministerial resignation at any other time. Once again we can see how this whole process has been driven primarily by the need to manage the Tory party. For the last thirty years every single Conservative Party leader, both prime ministers and leaders of the opposition have been brought down, in part, by this obsession about Europe that had little to do with the EU itself and much to do with jockeying for power within the party.

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The cynicism of the likes of Boris Johnson was plain to see. He has consistently said that May’s deal was an appalling deal and voted against it twice. But now that there’s a chance that the one thing he does care about, his becoming Prime Minister, might come about if the deal goes through, suddenly he is going to vote for it.

Time for a Boris Johnson anecdote me thinks. As I am sure I have mentioned before, name-dropper that I am, the Johnsons are old family friends of ours. We all lived happily in the same district of Brussels when my father and Boris’ worked for what was then know as the EEC or the Common Market. These were the heady days when we first joined the project that was so obviously bringing peace and prosperity to its member states. I was a kid then and not aware of the implications of all of this but it was fun to share a playground with other kids of multifarious nationalities. Though I would have to be honest and admit that playground fights at the European School did divide along national lines. For some reason, us English-speakers (our class was made up of British and Irish kids and we fought side-by-side) always seemed to be pitted against the Danes and the Italians. In the case of the Danes, this was a bad idea as they tended to be rather big. I remember being thumped by a large fellow who was probably related to the berserker who held the bridge at Stamford Bridge against the army of Harold Godwinson. Anyway I digress, back to Boris, or Alexander as we knew him then, this was before he had adopted the sobriquet that allows him to be one of those politicians who are known only by their first name. The Baxters and the Johnsons went on holiday to some Belgian holiday camp, I can’t remember the details as I must have been about five at the time. What I do clearly remember is my treatment at the hands of Boris. He is five years older than me, making him about ten. We were on a seesaw together and being much bigger than me, he could hold his side down and keep me up high. I probably thought this was quite fun for a bit but then he kept me there and kept me there until he suddenly released his end and I came crashing down. I smashed my face against the seesaw bar and got a bloody nose and probably some dented pride. He thought this was hilarious. He was a bully then, just like he is a bully now.

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As Polly Toynbee wrote in her recent column, Theresa May will be remembered as the worst Prime Minister of our lifetime… until the next one. We will be led by one of two plucked from a truly dreadful rogue’s gallery by Conservative politicians and then the final selection will be made by the members of the Conservative Party. The membership numbers, which they keep secret because it is so embarrassingly low, is believed to be somewhere below 150,000. So we will be going from the Referendum, which many people like to boast was the biggest act of democracy in British history, to having a Prime Minister chosen by what can only be described as a cabal. I saw some wit on Twitter describing the unseemly scramble for the leadership of the Tories as being like Game of Thrones but everybody is Joffrey (he is the very blonde, sadistically evil one who stands out for his nastiness in a show full of nasty characters.)

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Enough about the Tories, what about our sovereign Parliament? For many, the Brexit vote was about wresting our freedom from the undemocratic clasp of the European Union and handing it back to what we like to style as the Mother of Parliaments. It is, of course, worth bearing in mind that half of this great seat of democracy is the unelected House of Lords. This chamber includes Bishops, making the United Kingdom, the only country in the world, other than Iran where the priesthood have official political power. Sitting alongside these defenders of the faith, you will find hereditary peers, because y’know, they were born that way. Speaking of which, the whole system works in the name of a Monarch. I am sure many of us think that the Queen is a lovely lady, who does a fine job, but she is hardly an example of democracy in action, is she?

So last night, Parliament, having voted twice against May’s deal, managed to engineer a series of votes to propose alternatives to this deal. The government was set against this series of votes going ahead, but Parliament heroically asserted its rights, its sovereignty, hurrah! And then proceeded to vote against each and every one of these alternatives. Oops!

And here we come to the problem of the referendum itself. Let’s remind ourselves of the exact wording of the question:

Should the United Kingdom remain a member of the European Union or leave the European Union?

Some people still claim that this was a simple and clear question with a simple and clear outcome. But, Norway is not a member of the European Union and Gabon is also not a member of the European Union. Everyone is very keen on respecting the result of the referendum and obeying the will of the people but did that result mean we should not be a member of the European Union in the way that Norway is not a member of the European Union or in the way that Gabon is not a member of the European Union? (I chose Gabon randomly because it has a vaguely funny name and sounds a long way away, I could have gone for Turkmenistan or Niue.)

And that’s the problem of trying to slot a bit of direct democracy into a system of representative democracy. It’s the old square peg into a round hole conundrum – it doesn’t really work.

We have a system of representative democracy, in which we elect what we assume to be sensible people to do things more or less along the lines that we approve of, a bit more right-wing for some, a bit for left-wing for others. If they don’t act along these lines or don’t do what they promised they would do or at least without a good reason for not having done whatever it was, we can choose to chuck them out the next time and get a whole lot more in, who we hope will be more sensible. A referendum is an act of direct democracy where the people answer a question directly. Referendums are baked into some political systems, notably Switzerland, but not ours. Because they are one-offs and people might vote for all sorts of reasons on that one day, that aren’t really about the question being asked, they generally have a requirement that there needs to be a large majority to change the status quo. So you would have to win 60/40 for example to enact the change proposed by a referendum.

And before anyone points this out, I am aware that both main political parties fought the last election promising to respect the result of the referendum, but as the result of the referendum was unclear, see above, then what were they respecting? In fact, both their manifestos promised to respect different interpretations of the result of the referendum.

The difference between representative democracy and direct democracy is as old as democracy itself. Athens had a system where all the eligible voters, i.e. men (obvs!) and not slaves (even more obvs!) could turn up at the market place, the Agora, and vote on whatever was being debated that day, I am sure I am simplifying this. Whereas Rome had a system of representative democracy where the people voted for senators to take decision as they saw fit.

Direct democracy did lead to some fairly silly outcomes, like the Athenians sacking a general, Alcibiades, right in the middle of a war. Incidentally, Boris would have recognised a fellow of equally fluctuating loyalty in Alcibiades. Having been sacked by the Athenians he then joined up with their enemies, the Spartans. Then, when the Spartans also decided they could do without his services, he went off to serve the enemies of all Greeks, the Persians.

And the representative democracy of Rome led to deep corruption and eventually to an Emperor taking the whole thing over and leaving the Senate as little more that a quaint relic of the past. The Emperor basically appealed directly to the people and told them he knew what they wanted far better than the corrupted, self-serving senators ever could. If you want to imagine what that would have sounded like, picture Theresa May’ speech from the other day but in Latin, and not on the telly… and sounding actually convincing. Or maybe Hitler in 1933 when he decided that having won the election, there was no need for any more elections.

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So what to do? I think I pretty much dodged my own question to myself in my last blog, so how about this:

  • There’s already so much division and this country needs some healing.
  • The longer this all goes on, the worse it will get.
  • We can only really start healing ourselves “after” Brexit
  • So we might as well start the healing process as soon as possible.
  • Pretty much any outcome will piss a large swathe of people off.
  • Only one outcome will actually bring an end to the whole process, revoking Article 50. (No Deal will not bring an end to anything – we are going to have to negotiate trade deals on a case-by-case basis with every nation on the earth, so far I think we have successfully negotiated deals with, amongst others, the Faroe Islands and, I think, Niue, and this time I am not using it as an example of a faraway place, it really is one of the few places on earth that we will have a trade deal with as of, well… today if it all really goes tits up.
  • So let’s revoke. Alright, alright, of course I know that will mean a shitstorm. But No Deal would be a  shitstorm of a different nature but a shitstorm nonetheless. Every other outcome would be more of a shifting of the shit tectonic plates – less immediately devastating than a shitstorm but more consequential in the long term. Maybe the shit tectonic plate of this Sceptered Isle will reattach itself back onto Gondwana.
  • What we need to heal ourselves is a common enemy. There is no better way to unify a nation than to turn their ire away from themselves and onto a perceived other. And as luck would have it, we have just such an enemy at hand – climate change!
  • Brexiteers love to evoke the Blitz spirit, confident that the plucky Brits will pick themselves up from a good hiding from the Hun and survive happily on meagre rations of turnips and rabbits.
  • But with climate change we can have all that blessed suffering and more, with the added advantage of not actually having voted for it!
  • So let’s try and coalesce around a common cause, to fight a threat that will genuinely blight the existence that we know and hold dear in a way that the European Union never did. If you were worried that your passport wasn’t blue anymore, how much more emblematic would it be to see the White Cliffs of Dover crumble into the sea. (…maybe, what with being cliffs and all, they would be the last thing to crumble into the sea. I was being poetic!)

So there you have it. Revoke Article 50. Get over it. Come together to fight climate change. Create jobs that are both meaningful and well remunerated, carrying out essential work, like insulating buildings to make them more energy efficient. Create local jobs that mean transport distances can be shortened as more produce is produced and made available locally. Evoke the kind of “Dig for Victory” spirit of the war, where people were encouraged to grow their own food in all sorts of innovative ways. And there are some brilliant innovations on food production that deserve to be rolled out. A Green economy would create all sorts of jobs that could avoid the kind of race to the bottom of employment conditions that the gig economy does not. Again, if that whole “backs against the wall, Dunkirk” spirit is what turns you on, we can call up all sorts of war-footing metaphors to stir the spirit in this existential battle against the forces of darkness, like literally against the forces of darkness as the planet burns!

So c’mon folks, who’s with me? Over the top we go…. aaaargh.

Enough of that! What of the family? As it happens, we have a teenager in the house, as Otto turned 13 on Saturday. We do get a lot of Ava-Jane on this blog, well it is kind of supposed to be about her, but I am sure that she, more than anyone, would want me to salute Otto on this milestone and make sure he got his deserved recognition in a blog about her. She is his greatest fan, and he does have quite a lot of fans. And he is her greatest fan and she has lots of fans too. Being the sibling of a person like Ava-Jane is a strange mix of a massive privilege in life and a weighty burden. Otto is very appreciative of the privilege and carries the burden lightly. AJ is truly fortunate to have him as a brother as he is so attentive of her. Today, Fo had to change the dressing on AJ’s feeding tube and this gave AJ a nosebleed. Otto was demanding that Fo call an ambulance, and he has a point, you can’t be too careful with Ava-Jane. I also owe Otto a debt of gratitude. When he was tiny and Fo was really not well (you can read about it in some of my early blog posts) and I had quite a lot on my plate, he was the easiest, coolest baby imaginable. You put him to bed and he would slumber all the way through until the next morning ready for a feed. So cheers Otto, happy birthday. (I added a picture of him and AJ from years ago to spare his teenage blushes. And got his approval before posting the above. I am not sure where the cut off should be when you should ask them before you post stuff about them is, but I reckon somewhere around 13 would be about right – they should own their own social media.)

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Cheers!

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Watching the rugby with Godfather Stan. I have seen Scotland not lose at Twickenham as often as Dad has.

Well everyone else is banging on about Brexit, so why can’t I?

The good news, dear readers, is that AJ is on pretty good form. The bad news, is that precisely because she is on pretty good form, I can allow myself to write about something else. By popular acclaim – well reader Quirk2014 *wave Rowena* was surprised that I had not mentioned Brexit for a while – I will indeed write about everyone’s favourite topic… Brexit it is!

Obviously the most coherent thing to say at this point is not only…

WTF??????

but also…

FFS!!!!

Or to put it another way – uuh? The reputation of our country is being dragged through the mire. We haven’t got an ounce of political energy left for anything else. We are all horribly angry. And for what? I like to think of myself as an imaginative person, but even in my most fanciful whimsies, I cannot possibly summon up a vision of the benefits of Brexit that would justify the crap we have been through and the crap that still awaits us.

Let’s weigh it up… on one side you might have a gleaming, shiny free-trade agreement with the Philippines, say, but, but, but, on the other hand, in order to get to this, we will have sacrificed centuries of parliamentary tradition. You literally cannot keep up with the pace at which a once-proud nation is ripping up its cherished historical precedents. I popped out for a fag in the middle of writing this paragraph and I have just read that Brexit has been delayed. I haven’t read any of the analysis of what the implications of this is but I believe that we now need each and every one of the 27 other nations of the European Union to now say “Oh dear, poor UK, you can’t get your shit together at all, can you? Would you like a little more time?” And maybe, just maybe, some of those nations, might just add a little “but, what about…?” so for example, Spain might say, “Of course, you may have a little more time to sort your shit out, but what about Gibraltar, that’s ours, right?” or France might say, “…those are our fish, non, mes cheries?” Because that has always been one of our massive failings during this whole process, we have really spent very little time thinking about what the people on the other side thought.

Any Brit, could very easily summon up a negative stereotype of any European nationality. The pouting Frenchman, the lazy Spaniard, the severe German, but do we ever stop to think what their stereotype is of us? I have spent quite a lot of time walking amongst these alien Euros and I can tell you that they think of us as haughty and, worse still, as perfidious. We also have positive attributes that we assign to national stereotypes, so the stylish Frenchman, the fun-loving Spaniard and the disciplined German. They thought of us as sensible, but we don’t look so sensible now, do we? We have done the equivalent of the French suddenly becoming frumpy, the Spaniards dour and the Germans hopeless.

I jotted down some thoughts on my commute home, I am not sure they all necessarily fit together coherently, so I will give them to you in sections with headers.

What have we done to ourselves?

At the end of one of our poker nights, we unwisely decided to discuss Brexit. There is never a good time to discuss Brexit but 2am after one, or maybe even two drinks, had been taken, is definitely not a good time for it. We are a bunch of middle-aged, white men from the same small village in Buckinghamshire, so hardly a cross-section of society, but even here we had all the different points of view represented and passionately held. No-dealers at one end and call-the-whole-thing-offers at the other and everything else in between.

I had a real set-to with one of my favourite people. I was making the point that no-one really knew what they were voting for. He is from the north and understood this to mean that I was implying that the leave voters from his part of the world were thick. I am a bit posh and probably a little pompous but this is not what I was trying to say. The point is that no-one, not even the leaders of the Leave campaigns knew what they were voting for. Many of them fully expected the UK to remain part of the common market or, at the very least, the customs union, and indeed they advocated these situations, see Leavers – Single Market is what we love. Northern Ireland was not mentioned by anyone, not even the sodding DUP. And, as no country had ever left the EU before so there was no precedent on which to base the process.

A Better Brexit

Could it have been done well? Yes, probably. What we shouldn’t have done is to trigger Article 50 so early, without any clear idea of what we wanted out of the process. That is a failing of our political leadership. Both main parties overwhelmingly voted for the process to start, so both May and Corbyn share a lot of the responsibility for it having been done so badly.

Project Fear?

When anyone points out any of the downsides of Brexit, like when the chairman of a Japanese car company says Brexit will negatively affect their investments, they get shouted down by Brexiteers for spreading Project Fear!! But then when cancelling Brexit or just having a second referendum is proposed, these same Brexiteers start ranting about how there will be civil unrest and blood on the streets, which sounds quite fearsome to me!

Cliff-edge brinksmanship

Bluff Tories had always said that the way to negotiate with the EU was to take them to the edge and then they would fold under the mighty negotiating skills of the likes of David Davies, the Brexit Bulldog or Raab, the one with too many As in his name but not enough in his geography exams (he was the one who was surprised that we lived on an island see: Raab – UK an Island??!!), or whoever was next in line to step up to the plate only to promptly resign for not being able to support the deal they themselves had negotiated. But the EU did not fold and the only body this Boy’s Own Misadventure, this derring-don’t… just don’t, of a negotiation tactic has worked on is the Conservative Party itself.

No one has any real idea of what happens next but quite a few of the pundits I follow would not be surprised that Theresa May will not drag the corpse of her horrendous deal out from its well-deserved grave where it has already been laid to rest for a second time and demand they vote for it. And all the assorted ghouls of the ERG and the DUP, members of The Undead like the  treaty itself, who have not only voted against it twice already, will shamble through the lobby alongside the Prime Minister that they have consistently bad-mouthed and attempted to oust. It will be like in 897 when Pope Formosus, who had been in his grave for nine months, was dug up and put on trial in the Synodus Horrenda. Gruesome as that might have been, they did at least condemn him for the crimes he had committed in life (though I think they were trumped up charges).

I am sure that at the last these Brexiteer zealots, will know that this is their last chance of glory and if they do not grab it now, horror of horrors, we might not leave the European Union after all and their raison d’etre will have vanished in a puff of smoke. Was that French? Oh, la, la! So it will have been Gauloises smoke.

What would I do, you ask?

(Writing a blog, really is the ultimate example of the inner monologue). Well, as the farmer in Norfolk told us when we asked him the way to Peterborough, “If I wa gonna Peterborough, I would’na start from ‘ere.” So, I wouldn’t have spent years insulting the EU, years excavating  a special relationship for this Septic Isle, where we didn’t participate in the euro or Schengen and then call a referendum too simplistic to resolve such a complex question. I certainly wouldn’t have voted leave, triggered article 50 and then, I hope I would not have behaved like a massive dick during the ensuing negotiations. (Sorry, I felt I needed to say that.)

But given where we are today… I… well… I would just call it all off obvs! The Venn Diagram of “Things that Luke Baxter and Theresa May Have in Common” would have a very small overlap area, I admit, so I can’t really put myself in her place but oh, boy, if I were, I would be so tempted to just say, “Oh fuck the lot of you, I did my best, I have no idea what anyone wants, I have no idea what I want, so I am going to call the whole thing off.” And she could.

So failing that, the only way out of this sensibly, that I can see, is a second referendum. The first referendum has somehow been elevated as the greatest democratic act known to history, though there might be some quibbles from women pre-1918, poor blokes pre-19th century, or, indeed anyone at most times in history, in most places. But somehow this referendum, cooked up by a posh Etonian chancer as a bit of a wheeze has become the sacred text, the immovable doctrine by which we shall forever live. We have been solemnly told that more voting would be entirely undemocratic, we have had our fill of democracy and we shall not we allowed anymore.  “You can have too much of a good thing, don’t you know!”

So if we can get to a second referendum, we would have to match the Brexiteers bollocks with bollocks of our own, along the lines of:

That which was wrought by the people in the sacred referendum can be undone but by the people through (another)  sacred referendum (ahem).

Well done if you have made it this far. I will end on an Ava-Jane note. It is absolutely bloody marvellous having her back home and on good form. It might not last long as she is probably only having fewer seizures because of the steroids and they are really not a long-term solution. But with AJ, really, ever since, on Day 2, when she was diagnosed with a severe heart condition, it has always been the case that you need to grab the good times as you don’t know how long they will last. And AJ really does grab the good times and is back to her most hilarious self.

I was back from work in time to get her to bed. So we went through the full ritual of her pretending to brush her teeth and then chucking her toothbrush on the floor, choosing a book, i.e. taking out every book and then saying “No”, putting it back and moving on. Then we read the book and supped some milk in bed (she supped the milk, I hasten to add!). Finally, we have the fun of making it very clear to Dad that she just wants to kiss Mum and not him, well not him, until she deigns to. After much pleading, she did eventually give me a kiss. She has a cold, cold heart that one and she treats me mean.

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Hospital Existence

Hospital existence is quite weird, really. For me it’s a bit like the experience of a long-haul flight. You are trapped inside a confined space with a load of strangers with absolutely nothing to do and without the attraction of an exotic destination. So, like a long-haul flight, but where you go backwards and forwards without being allowed off the plane. I am someone with a very low boredom threshold so, as with a long-haul flight, I need to arm myself with a variety of entertainment, a load of podcasts, some selected to fall asleep to, a couple of books, a full Netflix series plus, at least two films, in case the series proves to be a duffer. I am in the middle of Nightflyers, a sci-fi based on a book by George RR Martin. I am not sure about it, it’s certainly no Game of Thrones.

And then you are back to sharing a room with a bunch of people, which is not, as I approach my 50th, something I particularly enjoy. I had quite enough of dormitory life as a kid and was only too pleased to leave it behind me. It has been a while now that I have only slept with someone that I was, well… sleeping with. In fact the last person I regularly shared a room with was Mum, when she took me off on jaunts when I lived in Spain. We shared to save money so we could afford to stay in the Parador hotels. So it is quite odd to be flung back into a situation where you are suddenly sharing sleeping quarters with a random slice of life.

We have a very noisy African family in the bay next to us. The kid sits on his phone as various aunts visit, each with a bit of advice for him in a variety of languages, that he seems to ignore. The dad has made a rare visit and is currently getting a very severe talking to in French from the mum… I wouldn’t want to be in his shoes… she sounds very severe.

One of the bays has got its curtains drawn, against the regulations, and it sounds like they are having a teen sleepover. I can’t hear what they are saying but it sounds like whispered gossip.

And obviously all the kids are unwell, in one form or another, so there’s lots of crying, coughing and general sounds of unhappiness.

My discomfort at sharing is not just all about me, it is also partly in sympathy for my roommates. I have been told by the aforementioned people who I have slept with that I snore. And from various re-enactments I have heard, apparently I snore very loudly.

I once took a sleeper train from Madrid to the Pyrenees. The train had come from Seville and I boarded in the dead of night and the other people in my compartment were already asleep. So I settled myself down to go to sleep. Then, a few hours later, I was woken up by one of my fellows, who shouted out, in English “Stop bloody snoring!” He was very nice, we had a coffee together at the station when we changed trains and we headed to different parts of France.

Luckily for my new-found, randomly selected roommates, I don’t sleep much

Ironically living in a hospital is supremely unhealthy and also expensive. Unless you manage to plan ahead, you are living out of vending machines.

Woah, she is giving him crap. Something about “…with my girlfriends, in front of me. I don’t need a man like that…” it’s past eleven o’clock, this might be very British of me but I would say that maybe this is not the time or the place to be giving him a roasting however much he deserves it. She’s has just given a loud hand clap to emphasise each time he has done “it”. Time for headphones and Spotify.

Fo and I have done this before. It does feel harder this time without Mum around. She  would often spend nights with AJ when she was in for the extended period with leukaemia. And she would always make sure we had a stocked fridge and, more importantly, she had a stock of wine that she was happy to share on those nights that I was back home.

Fo and I see each other fleetingly as we pass car keys to each other and give a quick briefing on how things have gone, then rush on to not miss the half hour of free parking… I got a ticket the other day.

So my day today was to waken to AJ getting her obs done – temperature, pulse etc. (this happens frequently… through the night and day). We then had a cuddle in bed and both slumbered some more. When she did wake up properly she was in good form and we grabbed some pens and paper from one of the play specialists and coloured a parrot. Then Fo came and I went home, had a bacon sandwich and slept for an hour in my own bed. After that I mucked out the hovel to get it ready for the ewes to lamb. It might seem strange but shovelling shit was just what I needed, it was cold and rainy but it just felt healthy to be outside. Then I went to see Otto’s school drama performance. I really wanted to make sure I went as I had missed it last year and it’s important that he feels he is getting our attention at times like these. He is very stoical and has never grumbled once about anything related to Ava-Jane ever but he needs his parents too.

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Then I had to plug my car in for a bit to charge it to make sure that it wouldn’t conk out on Fo on the way back. We are down to just my electric car at the moment as Fo’s one that takes AJ’s wheelchair is dying.

The above was written late last night, as you might be able to tell by the disjointed sentences but we are now back home. Yeah!

They have let us out. Many years ago now, I wrote about how the nurses on the children’s cancer ward assessed Fo to see if she was competent enough to administer chemo drugs straight into Ava-Jane’s heart and decided that she was. It was a very fine-tuned process, that required Fo to administer the drugs to the beat of AJ’s heart. So now that all we have to deal with is shoving some nutritive shakes and milks up her nose, apparently even I am qualified!

Ava-Jane has been in hospital since Monday and has had a course of steroids that should bring her seizures under control and early signs look promising. She also had a feeding tube inserted to get liquids into her as she had been losing weight after not eating and drinking a lot. She’s now back home and kitted up.

As Fo’s car is out of action, we had to pack all of AJ’s latest accoutrements into my Nissan Leaf. For a small person, Ava-Jane has always tended to take up quite a lot of space. As someone who who needs multiple large chairs for assorted needs and ramps to accommodate all these chairs, AJ is fortunate to live in quite a big barn.

We have now added lots of big boxes containing tubes, syringes and various concoctions to the household clutter. There is also a big pump to get these concotions straight into her stomach. See pic below for Fo and AJ debating exactly how the whole nasal feeding system works.nCZhSRAFSv2WF84gWEkIBw

People have said that our lives do seem to be particularly bonkers and they might have a point. No sooner have we got home than we are going to have lambing upon us. Dear readers, wish us well. It could all go horribly wrong.

The key thing that we will need to remember is to not confuse lamb colostrum and AJ’s nutri-milk – they look very similar and fulfil a similar role, so maybe it might not be such a bad idea after all.

…I will be leaving it there. Time to get into my own bed, with Fo (quietly, she is asleep), at home. As someone mentioned, one does have too much time to spare in hospital and as proof of this, I leave you these two memes I made as I wandered the corridors aimlessly late at night. Apologies to Facebook people who will have already sen them.

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Ahh, the sweet repose of a hospital bunk

Been here before and that’s for sure. So we are back in hospital and it does seem like quite a while since I had to make up a bed next to Ava-Jane and snuggle into a nylon pillow surrounded by so very many machines that go beep. Then of course there are the wails and snores from our fellow guests but I can’t complain as AJ had a good wail when she had the tube put up her nose and as for snoring, well… these poor sods don’t know what they are in for once I nod off.

Hopefully it will be but a short stay. AJ is in for a course of steroids which should bring down her seizures for a while. I don’t think they are a long-term fix but should stabilise things. She had them before when she had the initial brain damage and they stopped the inflammation in her brain so hopefully they will help again. As she hasn’t been eating much and hardly drinking anything, they are also going to make sure she gets some liquids and nutrients inside her.

It might sound weird but there is something special about hanging in a hospital with Ava-Jane as there is very little to do other than just hang. When she was having her wail, I thought a bit of distraction might help so we went off on a late-night explore. The Stoke Mandeville has fantastic, long, flat corridors and with no one around, you can really get up some good speeds. We did one circuit and then once we got back to the ward, AJ demanded “more, more” so we did the circuit again.

As you can see from the pic taken this weekend, when she on good form she is as smiley as ever. AJ, Otto and I went to see the Lego Movie 2. As someone just weeks away from his teenagedom, Otto was fully prepared to be mightily unimpressed by what is, after all, a kids’ movie, and obviously he is not a kid. He had loved the first one but that had been many moons ago, back in the depths of history (2014) and much had changed in the intervening years. We all loved it, Otto most of all.

Well, night folks and pray for the poor benighted souls who have to share their sleeping quarters with me! Luckily for them, I probably won’t get much actual sleep.

A very quick update

I realise that I sounded pretty downcast about AJ in my last post and worried quite a few people. Well as you see in the photos in this post, she is full of life.

We went to the neurologist last week and the basic diagnosis is that she is unlikely to grow out of the epilepsy but the kind of seizures she has are not damaging her brain. The neurologist still thinks that it will be a question of getting the right balance of meds and the seizures could reduce to one or two a day. She also did confirm that if someone is under the weather, healthwise, this could make them more prone to seizures. Our friend Tash who came to stay with Aislin, her daughter, who has epilepsy, confirmed this. This would tally with the pattern that we are seeing with her seizures being worse in winter. AJ gets every cold and sniffle on the go during winter.

But AJ has made a massive turn for the better over the last week. (Ha! She just had seizure as I typed that! She has one type where she screeches, and she now gets them in her sleep). Last Saturday we filmed her for hours and she spend a lot of the time really pretty out of it and twitching. But then, quite suddenly, she is back to her old self, giggling like a loon, still having the odd seizure but recuperating more quickly. She’s also eating much more and, risking “too much information”, going to the loo happily.

I wanted to share this update after the last bleak post. So here are some pics, mostly taken by Tash.

AJ on a pony and in her power chair, hair flowing, teeth gritted.

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Proud face – check me in my pink hat and solo driving. 

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The little squidger is not very well…

…she’s not very well at all!

Her seizures are getting worse and worse and she is just not the ray of sunshine she usually is and it’s heartbreaking.

Through all the ups and downs over the years – barring a couple of months when her brain damage really took hold – AJ has always been able to raise a smile in adversity. Whether it was coming beaming out of an induced coma post a heart op or welcoming the nurses with open arms to pump her full of nasty chemo concoctions, she has always been able to take everything in her stride… given that she can’t actually stride, that’s a slightly unfortunate turn of phrase, I admit.

As readers of this blog will know – she has got the ability to pull the saddest of sad faces but this is generally employed out of empathy for someone else’s sadness – a baby crying, Otto having a tantrum, or bloody Bing Bunny whingeing about his lot in life on the TV. But not this time, this time she is sad for herself.

She has even got a new facial expression, where she does not just look sad she looks disgusted and pained. She spends quite a lot of time really quite out of it and from some of the reading Fo has been doing, being out of it for extended periods of time is not a good thing at all.

We have been trying to film her seizures as we have managed to convince the neurologist that things are getting bad and she really needs to revise the treatment she is on. As I said in my previous post, she is on a cocktail of meds, which might be playing havoc with her – she is not eating much, losing weight and struggling to go to the loo. We have got an emergency appointment, but these are short and typically AJ will not have a seizure, so the neurologist does not have much to go on to make a diagnosis. Hopefully the films will give her something to work with.

It’s also quite important to track the evolution of her condition and I was thinking, “if only we had some sort of record of AJ’s health written down somewhere…” Doh! This blog should be just such a thing. So I spooled back through posts from this sort of time last year to see what I had written. In between Brexit rants and lamentations for Mum dying, I did manage to write a bit about AJ and she was having very severe seizures. In fact she had had a three-day brain tracker just before Mum’s funeral. But she didn’t have a single seizure during those three days. They were quite severe back then but not nearly as frequent as they are now. I don’t think they left as dazed as she is at the moment. Her teacher Caroline is really worried as AJ is not participating as much in class and she had been making real improvements.

(Got some Dylan on as I tap away – Desire, great album. Incidentally if any Dylan heads are reading this – Maria? There’s a very good BBC World podcast about the Ruben “Hurricane” Carter case, which is worth a listen.)

We do have to read some pretty dreadful things. Epilepsy is a massively complex and varied thing, with all sorts of variants. AJ has not been given an actual diagnosis so we don’t really know what we are dealing with. One of the ones that sounds along the lines of what she has, Rasmussen Syndrome (yup that’s right, another syndrome, that’s just what we need!), sounds appalling. There isn’t a cure for it but one way of stopping it getting worse is a lobotomy. Lobotomy is one of those words, which when you read it in the context of something that your daughter might have to undergo, you can only ever read as !!!LOBOTOMY!!!

I remember the day that Fo called me when AJ was poorly and first went into hospital for what transpired to be leukaemia. She told me that it might be something to do with her spleen or it might be leukaemia. Again, I heard that as !!!LEUKAEMIA!!! …it was leukaemia.

It’s never a good idea to diagnose by Google! I was going to put a “but” in there but actually it really is never a good idea to diagnose by Google. We will see what the neurologist has to say and try to get to the bottom of what is going on and see if there is a treatment that could get things under control.

So after a long day she is just going to bed now with a story from Otto – I can hear them reading Peter Rabbit with some embellishments from Otto. I think he is giving Peter his Gangsta voice, which is better than James Corden I suppose. He is a great little boy, or not so little – 13 next up. But it is very hard on him seeing his adored little sister go through so much pain and turmoil. The three of us went shopping – we aren’t getting out much but sad though it sounds, a trip to Morrison’s with Otto and AJ is a great laugh though very inefficient in both time and resources. We managed to spend about two hours in one supermarket and spend the weekly food budget basically on snacks! The freezer will provide…

Fo is away for the night for a well deserved 12-hour escape. AJ, Otto and I had a pizza, popcorn and ice-cream meal in front of Doctor Who. Perfect! You have got to grab those little moments of joy and that’s a pretty joyful combination.

This weekend has been a lot about bed. Pics of AJ awaking and AJ just now, fast asleep. Then one with Fo and Otto, all cuddled, Fo looking as delighted as ever to have her picture snapped!

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