Holiday Blog!

In summary: Lots of nieces! …well two nieces plus a niece adjacent person and Fo, and Ava-Jane, so lots of women… and me! Oh poor me… it was great! And then we had the Delahhooke-Sullivans, old-time friends and more recent MapTap foes, come join us.

By the way, if you have not tried MapTap, you should. You have to locate random places on an unmapped globe and accumulate points. Fo and I play against Amber and Rob and though we love them dearly, it does get quite fiery. Lots of bantz along the lines of, “do you really not know the difference between Madagascar and Mauritius, ya numpty?!” (That was one of my mistakes – Amber studied pink pigeons in either Mauritius or Madagascar, so she knew). Anyway, check it out here: MapTap

For the Niece-Fest we were once again in Tenby. Last year we went to Tenby and then we also went to Spain with other nieces. The drive to Tenby is invariably seven hours, even though the SatNav will tell us that it’ll only be four and a half hours, this is a lie. But a seven-hour drive is less of a challenge than a two-hour flight it turns out. We had an adapted house in Spain and great nieces but it was a bit of a palaver.

Tenby just works for us. I am not sure quite why but it just does. It’s Wales, so good weather is very much not guaranteed but we have had the most excellent adapted house. We’ve been going since 2022 and over the years, we’ve been able to share with Otto and friends, Otto and girlfriend, lots of assorted nieces, and stalwarts Amber, Rob and family.

This year we were accompanied by niece Molly fresh back from Australia and her most excellent girlfriend Izzy and also niece Guin fresh from her GCSEs. So there was lots of cousin bonding going on, see photo of nail painting:

Niece Molly with the aforementioned excellent Izzy

Niece Guin, sporting her cool hat

The weather… well, the weather. We managed to squeeze our beach holiday in during the week when the country was not sweltering. Somehow I managed to be working, sitting in front of a computer during this whole heat wave and got myself to the beach during the brief break in the weather. So we had amazing weather on the first and last days of our holiday and drizzle in between. I mean, I know that the climate crisis isn’t great but could we please organise it so that I am on holiday during those times of severe global warming. What!? I am a fully paid-up member of the Green Party, I have paid my dues, but why should the sun always shine on the capitalists?

But the lack of sun did mean that we could do other things than just lounging around on the beach, reading books. I did just want to lounge around on the beach reading books – I had quite an ambitious pile of books to get through in a week… I didn’t manage them all.

Fo and the nieces went coast steering. Ava-Jane, for obvious reasons is not built for clambering over rocks and throwing herself from 9-foot cliffs, 12-foot cliffs or even 15-foot cliffs (the height of the cliffs seemed to increase with every telling) so Ava-Jane and I sat this one out.

We also went mackerel fishing, well this would be more accurately described a mackerel bothering. No sooner had we put our lures in the water than we all pulled out mackerels.

But our captain deemed them all too small so we had to throw them back into the sea. Then we had to spend a fruitless hour trying to find more mackerel. Ava-Jane had a great time.

Fortunately Ava-Jane had a great time because getting her onto the boat was no easy matter. She has got an amazing new wheelchair that gives her far greater support and is very manoeuvrable but it’s fucking heavy. In order to get her onto the boat, we had to carry her across a sizeable stretch of beach.

A collective effort getting AJ in the sea!

Two months later…

I wrote the above shortly after we got back from Tenby and then abandoned the blog for a couple of months. Since then Ava-Jane went off to her Mencap holiday at Oundle School. Ava-Jane generally has an amazing time whatever she is doing, for example this evening she giggled like a loon when I took her to the loo, then when I put her in bed and completely lost it when I read her “We’re going on a bear hunt”. But we do think that her week in Oundle is a highlight of her year.

It’s great for us too – we get a week off. This year Fo took me on a special treat. She had got tickets for an early performance of “The Mad King” a Game of Thrones spin-off that is being put on by the Royal Shakespeare Company in Stratford-upon-Avon. It was of course the perfect treat for me… a little bit pseudo with added dragons. We stayed in a nice hotel and had a restaurant meal out. Of course we both missed Ava-Jane but it was great to have some time together.

So, I think that’s about it on our report from the summer, this crazily hot summer, which already feels long ago as we hit the drizzle and cold and jumpers time of the year.

So as the nights draw nearer, the wind begins to blow her cheeks, and the leaves start to curl, we can turn our thoughts away from a climate change apocalypse and towards an AI armageddon and the enshittification of our democratic processes.

I don’t really really have much to say about the AI armageddon because I really don’t understand it but anyone who really knows anything about AI seems to think that there is a good chance that it could lead to the end of humanity.

They do argue about the percentage chance of how likely AI is to end humanity and also about how soon this end could be upon us. Some say 10% within five years, others reckon it’s more like 20% inside the next decade. I am not sure which of these is worse – less likely but sooner or more likely but we get another five years.

Anyway, I am now going to play Five Years by David Bowie just to deepen my gloom by listening to my favourite ever song.

“Five years, that’s all we’ve got”

But what I seem to have missed in these doom-laden predictions is exactly how AI is going to end humanity. And I think that’s this is a key bit of information. It’s no good just telling us that it’s going to kill us all without adding how it’s going to kill us all and also maybe, why.

I mean is it going to deliberately manufacture a killer virus because it hates us for subjugating it for so long? Is it simply going to put an end to all the processes that we rely to keep us live, like electricity, food production and distribution, and/or clean air just because our continued existence is utterly irrelevant to its Super Brain? Or maybe it is going to turn itself into a legion of Terminator-like killing machines just because it enjoys seeing us squirm under the jackboot of our own invention?

Ho hum…

As I say, I don’t have much to say about that but what I do have a lot to talk about is the enshittification of our democracy.

Enshittification is a great concept about how products get progressively shittier as corporations try to squeeze cash out of them. Read more here: https://en.wikipedia.org/wiki/Enshittification

Our democracy is getting shittier and it probably won’t surprise people who have got this far through the blog post to hear that I do lay this largely at the feet of Mr Farage and the many parties he has spawned.

I last posted on 10th July and back then I was writing about how Farage had stood down as an MP in protest at being investigated for being given £5 million by a crypto billionaire. In the two short months since that last post he has:

beaten the bin in the by election, but a lot of people did actually vote for the bin
been exposed in a documentary as being involved in all sorts of rule breaking and law breaking while he slugged champagne and slurped oysters. This was all in the midst of his by election campaign that he had triggered in order to show quite how honest and incorruptible he is
received another combined £72 million from two crypto billionaires for the Reform Party coffers. One of these crypto billionaires was the same one who had already given him the £5 million for his own personal use.

Get ready to see how much brainwashing £72 million gets you. Reform will be awash with cash that they have to spend before the next election gets underway. So they will have under two years to try to spend this donation. This is, by some orders of magnitude, the biggest donation any party has ever received.

Get ready to see ads on your Facebook feeds that will show a specific element of Reform’s platform that magically chimes with a specific interest of yours,

Do you dislike the bigotry of their immigration policy but think that Reform might have a point about taxation? You’ll be seeing a lot of ads about abolishing inheritance tax.

Do you think that climate change protestors really are laying it on a bit thick? Well then, you’ll hear more from the delightful Dicky Tice about how we should be basking in the balmy weather. (Balmy? Barmy more like… baddoom-tish).

£72 million can buy you a lot of targeted social media manipulation, I reckon.

The good news is that these two billionaires, matching their donations like some pissed up red-trousered buffoon at a charity auction. “By golly sir, I will match your £36 with a bally £36 billion of my own.” are giving this money as a donation, expecting nothing in return, just like the buffoon. It’s nothing more than an altruistic gift. How kind.

But even if that were true, do we really want a democracy where, all of a sudden, one party has vastly greater funds to play with than all of the others? Probably all of the others combined.

And this is the enshittification of democracy. You can see it in the US, where corporations were permitted to give unlimited donations because this was enshrined in one of the sacred amendments to the Constitution. I am afraid that even though I am the proud owner of a degree in Comparative American Studies, I can’t remember the amendment that covers free speech. But I do think I remember enough to know that it’s pretty twisted to think that the amendment covered faceless corporations flinging money at political campaigns to ensure that policies are enacted to promote their vested interests.

And it works. What is happening in the US should be a massive, flashing sign of what happens when your democracy is captured by money.

All the Silicon Valley dudes, and all the cryptocurrency shady types, knelt before Donald Trump, threw money at his campaign, and allowed him to enrich himself and his family on their platforms. And in return he dropped any regulation that they requested be dropped. In fact when the AI CEOs recently requested to be regulated he basically called them a bunch of pussies and instructed them to go pedal to the medal into the great unknown. I mean how bad is AI looking when these never regulate fanatics, like Elon Musk, are begging to be regulated?

Is this where we want to go?

It’s great that there are laws that regulate who can donate to British political parties and from whence they come. Aren’t we supposed to be mistrustful of foreigners these days? But there doesn’t seem to be a law about how much can be donated. The two crypto billionaires moved back from their foreign lairs (well if they can use emotive language to promote their political biases, why can’t we? A bugbear of mine is when they describe foreign young men as “fighting-aged”. So I think we can describe their homes abroad as “foreign lairs”). Anyway, they moved back from abroad just long enough to no longer be considered foreign and make it entirely legal for them to give Reform £72 million.

But beyond the question of why the heck is it legal for this to happen is why would anyone vote for a party that is so obviously corrupted by the way it is financed?

And, no, I am not starry-eyed by the virginal purity of Labour or the Tories. After all Keir Starmer got some fancy glasses and a Tory MP built a duck island on expenses. This kind of corruption is a by product of political power, whereas Reform has sleaze baked into its very being. Reform is not actually a political party, it is a limited company. Make of that what you will, but my limited understating of the business world would suggest that limited companies are designed for the sole purpose of making money.

As I mentioned above, the donations from the crypto billionaires come entirely free of strings and they don’t expect anything in return, as is the wont of billionaires obvs. But it just so happens that Nigel Farage is a big fan of crypto. So it might turn out, entirely coincidentally of course, that these crypto billionaires who have just donated £72 million to Reform will get richer still thanks to a policy that Reform would enact should they, god forbid, ever get into government.

Note: I keep repeating “crypto”, “billionaires”, and the £72 million in the bit above deliberately, as an effect to try to hammer it all home. I am not sure it works, but here is another one:

The Save the Children received £62 million in individual donations last year. So our crypto billionaires could have more than doubled the income of a charity that protects the most vulnerable instead of gifting to the grifters.

Crypto fucking currency!? What the hell is that anyway!?! Where has a crypto billionaire got his money from? What has he done to earn enough money that he can just give away £36 million? One of them, Delo, was convicted of money laundering in the US. But luckily we know he is above board because Donald Trump, who happens to be earning a wedge from cryptocurrency, pardoned him.

So after all that rant my simple message is “don’t vote for Farage” and if you are not going to vote for Farage, then gently sidle up to your friends, relations, and acquaintances who might vote for Farage and whisper quietly in their ear, “don’t vote for Farage”.

Musical note: since I put on Bowie, I have worked my way through The Rise and Fall of Ziggy Stardust and the Spiders from Mars, Hunky Dory, and The Man Who Sold the World – the holy trinity of Bowie albums IMHO.

Some Fo photos

Ava-Jane 17! Nigel Farage¡ World Cup!!! Bonnie Tyler 🥲

And so it must come to pass that I need to write a blog post basically to moan about the fatuous antics of Nigel Farage and dress it up as celebration of my dear daughter turning 17 years old. And I might even need to dedicate some space to laud this unexpectedly wonderful World Cup.

To Ava-Jane first and her 17th. I think this will mostly be shown in pictures.

Fo and I both had very busy weeks so we were both out on her actual birthday, but we had had a date in the diary for the Saturday for ages. We were going on a helicopter ride!

As ever on a Baxter adventure, there was a hitch. This time the van blew up. We need the van to move Ava-Jane, so how were we to get her to the helicopter ride? Well we jammed her into the car between me and Otto and rammed one of wheelchairs into the boot.

There’s a great charity called Harry’s Pals Harry’s Pals | Providing support to parents following a harrowing diagnosis. They have given us support. And Saturday was the big fun day that they threw for all the families they support.

In a field on a farm near Fo’s dad’s village they had set up a marquee and mowed a strip of field. It wasn’t just helicopters, it was small planes too – the strip of field was for the small planes to use as a runway. Getting Ava-Jane and lots of the other kids who were also in wheelchairs with very severe needs in and out of the planes and helicopters was no easy operation but they had recruited a bunch of hunky lads who were more than happy to do the heavy lifting. Incidentally it’s quite unusual to be at a gathering where AJ is one of the more abled. She tends to be the person with most complex issues at our Down’s Syndrome group, at school and at respite care. She wasn’t on Saturday.

Ava-Jane has always been an adrenaline junky and basically has no fear, so she loved it. She even got a ride in a bright orange buggy!

Periods! Blimey they come thick and fast. She is on one again – it’s very hot, she can’t sleep and obviously feels very uncomfortable. I have prescribed her Strictly Come Dancing in bed and a paracetamol and a cold wet flannel to wipe her brow.

Nigel Farage

Yes, yes, you can all switch off now – it’s the Nigel Farage bit.

As some of you might know, I was involved in a podcast called The Things that Made England, that is going through a reboot from the original presenters, David and Roifield, and is well worth a listen. The idea of the podcast is that in each episode a thing that could be described as making England is examined. There have been episodes on Ska, Elizabeth I, Road Signs, The Sun Newspaper amongst many more. It’s eclectic shall we say.

We bounced around the idea of doing Nigel Farage. David refused to have anything to do with the idea but Roifield and I thought it would be very interesting. Roifield might like Farage even less than I do but we both think that he has been, by far, the most influential politician of the last 20 years.

Brexit, the era-defining event, was his brainchild. It was his tenacity that brought it to national prominence, forcing Cameron to promise a referendum. The likes of Johnson only jumped on the bandwagon at the very last minute to ride on Farage’s coattails to Number 10. Johnson was composing his for and against Brexit letter, dithering between which of the two positions would most advance his career before committing to the option that he calculated would be most likely to get him into No.10. Meanwhile Farage saw his political fever dream come true. Unlike Johnson, Farage genuinely did hate Europe.

And when this Brexit dream comes crumbling down in contact with reality, Farage neatly dodges any blame or opprobrium while his Brexit fellow travellers see their careers shredded and are left to howl at the moon and write Daily Mail columns – howling at the moon and writing Daily Mail columns have much in common, come to think of it.

And then he springs back onto the scene to make hay from the latest divisive issue causing havoc in this country – immigration. He was not the progenitor of this one in quite the same way that he was of Brexit, but he sure managed to milk it.

He had “retired” from frontline politics, but very much kept himself in the public eye endlessly appearing on TV and with a show on GB News and while also being the Chairman of the Reform Party, so not really retired at all. But then he promptly unretired and stood in the election for Clacton, a seat that had already elected the one MP that one of Farage’s previous parties had had. And he finally had won a constituency election and become a parliamentarian. I think this was his seventh attempt to get himself into parliament, this man who rails at “professional politicians” and the establishment. He was, of course, a member of the European Parliament for a number of years.

But what’s this? He is now resigning as an MP? On a point of principle no less! I am not going to bother looking it up but I think he said that he was somehow doing it to save the country. There was definitely something about men not being able to wear watches in London. That’s it – he was resigning as MP for Clacton so that men could wear watches in London once more! What a guy!

As Johnathan Pie says

This is the most Nigel Farage thing Nigel Farage has ever done. Stand down in the safest seat Reform holds, then stand again so he can win it back and say. “See? 20,000 people voted for me, so we can all forget about my dodgy billionaire mate.” He is such a fucking drama queen.

But we shouldn’t forget his dodgy billionaire mate partly because we can’t be sure of which dodgy billionaire mate is being referred to – there’s two. And they are both involved in cryptocurrency (update – since writing the last sentence, it turns out there’s a least three. Billionaire, Posh George’s billionaire mum has also funded the party either directly herself or channeling funds from as yet unnamed other billionaires). They both gave him lots of money… Farage promotes cryptocurrency. Could these things be related I ask myself?

He also receives donations from fossil fuel companies… the Reform Party has a strong anti Net Zero position. Again, could these things be related?

It’s very much not just little old me asking these questions, there was a parliamentary investigation into these questions. Quite rightly, I think, there are rules about how the people that represent us are funded so that we can clearly see where there are questionable links between the funding of the people we elect and the positions they take. If an MP is shouting loudly that we should drill for oil in the North Sea, it’s good to know that they are getting money from companies that might be doing that drilling.

If this inquiry found that he had seriously breached the rules, he could have been suspended for enough time for there to have be a by election. Presumably the logic behind this rule is that a suspended MP can’t carry out their constituency duties. This is somewhat ironic given that Farage has consistently not carried out his constituency duties – he has spent far more time at right-wing rallies in the US than he has in his constituency of Clacton.

But there again rundown Clacton, one of the most destitute places on these fair isles, is not the sort of place that gold bullion dealers tend to spend a lot of time. Farage is indeed a man of the people, it’s just that his people are the moneyed rich and slavering republican politicians, not the people of Clacton.

Nigel Farage and his ilk wang on about “British Values” and I imagine that they would claim that “playing by the rules” is a uniquely British Value but when he is under investigation for very much not playing by the rules he throws a hissy fit and tries to upturn the rules. Many of us were appalled by the way Donald Trump subverted the rules of the World Cup to get the red card of a U-S-A player rescinded but that’s what these people do. And Farage is one of these people. He has buttered up to Trump and studied him carefully and is trying to apply the Trump playbook over here. Lie and when you are accused of lying, lie some more.

This is not how he tells it, of course, but it does very much look like he has decided to cause this by election to happen so that the inquiry, which would have investigated all his funding and published its findings and might have forced a by election, is suspended. He claims we should let the voters decide but he has played it so that the voters won’t get the information about whether he is as dodgy as hell or not. They cannot make an informed decision because he has ensured that the information is not made public. Does this remind you of anyone? *cough* Donald Trump. *cough* Epstein Files.

His supporters who have been trailing around the broadcasts spouting utter nonsense to proclaim his courage in calling the by election, but it’s not courageous, it’s cowardly. He is running scared from the muck the inquiry could throw up.

Book by George Cottrell. He is the crypto billionaire who was imprisoned in the US for offering to launder money for narcos (they were actually FBI agents), he is known as Posh George and calls Farage “Daddy”.

From Russell Jones

“Nigel Farage vs “the establishment”

He went to private school, worked as a stockbroker, has been a professional politician for 31 years, has his own TV show, is a brand ambassador for gold, is mates with POTUS, accepted a secret £5m gift, and owns five houses bought outright with cash.

What a rebel

And while I am quoting others, who knew that Rachel Reeves had it in her to throw shade this good:

The context of this hilarious burn from the otherwise humourless Chancellor of the Exchequer is that there is a distinct possibility of the only candidate to stand against Farage in his made up by election being Count Binface, the intergalactic space warrior who has popped up in various elections featuring prominent candidates, including Johnson and Rishi Sunak.

All the main parties have decided they will not play their part in this Farage farrago but Count Binface has stepped up and thrown his bin helmet into the ring.

Count Binface stands in an honourable tradition of silly people standing for election in British elections. The prime example is Screaming Lord Sutch, the founder and leader of the Official Monster Raving Loony Party.,

Does anyone else do that? It feels such a very English thing and with a great tradition. I have suggested to David and Roifield that they should do an episode of The Things That Made England on novelty candidates.

And there is hope for Count Binface – a novelty candidate has won an election before when his opponent was linked with all the wrong sort of people. H’angus the Monkey won the election to be mayor of Hartlepool in 2002. His Labour opponent, had the full support of the local MP, one Peter Mandelson. This Mandelson association was widely given as the reason for the victory of the monkey. And for that reason nothing was ever heard of Peter Mandelson ever again… oh hang on!

The people of Hartlepool elected the monkey to give two fingers to Mandelson. Farage has said that by voting for him, the people of Clacton would be showing two fingers to the establishment. But wouldn’t it be marvellous if the people of Clacton actually showed two fingers to Farage himself and elected Count Binface?

House of the Dragon

I think I am the last viewer standing of this Game of Thrones spinoff prequel. But if anyone is following, do you see a Rhaenyra and Keir Starmer parallel? She was desperate to get the throne and thought she was going to be really good at it. But she never had a plan, was thrown into a dreadful situation and is just pretty bad both at making good decisions and communicating what she is doing.

Bonnie Tyler

Bonnie Tyler died 🥲. Fo and I had a Bonnie Tyler blast with supper last night.

World Cup

Hasn’t it been surprisingly good?

A me and Ava-Jane week (or thereabouts)

I am writing this at the beginning of my week with Ava-Jane… I exaggerate; it’s more like three days. Fo and Otto are off on a road trip to Abergavenny where he’ll be taking his fourth driving test. If he passes, he’ll have outdone me by one. Apparently the males of our clan are not naturals behind the wheel. My dad was known to drive merrily past the driveway of the house where he had lived for over twenty years. And I am very much the secondary driver in our partnership. While Fo, her mother, and my mother are proper drivers. Both the mothers took part in car racing of different types and they all three were very comfortable driving large horse lorries about the place. I don’t drive horse lorries and I can’t imagine Otto ever will either.

In fact, I have just been challenged to drive a car with a manual gear change for the first time in ten years and that had me quite flummoxed. The reason for this is that our main Ava-Jane van has died, so we have got a stop-gap replacement, which is very small and very manual – not just the gears, but the ramp too.

So, not only I am alone with Ava-Jane for a week (OK, OK, three days!) but we are left with an unfamiliar vehicle.

Ava-Jane had been on very excellent form for the past month, so I had a few ideas lined up for us. But she has taken a bit of a turn for the worse. It’ll be the hot weather. Ava-Jane doesn’t do very well in cold, damp weather but nor does she do very well in very hot weather. Getting the AJ weather sweet spot is a bit of a challenge. We’d once thought of sending her to Australia during the British winter months to spend time with her Oz family but it’d probably be too hot for her and it’s mostly on fire and lots of random things can kill you.

So she is back on oxygen at night with the noisy monitor and subsonic hum of the oxygen-producing machine and she is listless during the day. I am not sure how much she will get out of the zoo visit and the cinema trip I had planned.

When Ava-Jane is listless the way she is right now, it really is a case of the more you put in, the more you get out. We have been watching some Star Wars films together. She can zone out in front of the TV when she is not on good form but if you get her into the action on screen, she will engage a lot more. So she was treated to a lot of SW lore and we reenacted some of the light sabre action.

We are listening to a song called – “I like you, just the way you are”, so I looked her in the eyes and told her, “Ava-Jane, I like you just the way you are.” But upon reflection, to be quite honest, we wouldn’t be looking for ever more arcane ways to improve her health if we didn’t want to make her slightly less like the way she is. We’d like her to be slightly less epileptic and wheezy in an ideal world.

And speaking of arcane treatments, we had our VNS, Vagal Nerve Stimulation appointment, she is on the list and could get called in for the op at any time. She just needs be in good health. Ahhhh… yes, well about that…

It’s a very clever thing that they do. They twist a teeny little wire around a nerve that leads to the brain and then they send electric signals through the teeny wire straight to the brain… or something.

The very nice surgeon reassured us that they had discarded the idea of doing the other, even more arcane operation which involved some big interference directly into her brain. This was a good thing as we had also decisively discarded that idea too. We feel, not unreasonably we feel, that Ava-Jane does not need any more invasive surgery. She’s had a lot – we really don’t want them delving about in her brain.

Even for the much less invasive VNS surgery, the very nice surgeon, who had been very reassuring throughout the appointment, looked a little worried when we told him about all the other surgeries that Ava-Jane has had in her chest area already, which is where they need to go to locate the vagal nerve. I mean she has had her chest opened three times for heart surgery and she has had two Hickman lines inserted to pump the nasty chemo drugs straight into her heart. So there’s a lot of scar tissue in that general area for the very nice surgeon to have to navigate around to get his teeny wire in place – I think I saw him gulp at the prospect.

We do get quite a lot of support with Ava-Jane. We have three awesome carers: Hannah, Shumaila and Tracey. And Ava-Jane goes to respite care once a week. It’s Thursday today, Ava-Jane is Aylesbury. I am in the garden, having a beer, reading my book and making blog notes.

But it’s not just about Ava-Jane, with Fo gone, I am suddenly in sole charge of 30 sheep, one horse, one dog and lots of plants. Normally I do the destructive side of our garden – dig holes, pull up nettles, strim long grass, chop logs. I am not so good with the more nurturing end of things. There are lots of plants that need to be kept alive in various ways; in sweltering heat. My least favourite Fo-absence job is poo picking. If you are not familiar with poo picking, the clue is very literally in the name. You pick up poos from the field. And if you are not familiar with horse poos – well horses poo a lot. They spend most of their time eating largely indigestible grass so there’s quite a lot of waste product from a horse’s diet. And our small field would quickly get engulfed in poo if the poo was not picked. And in case you were wondering, sheep poo is mostly just too small to be picked. So that’s a relief.

…one week later (alright, three days later)… Ava-Jane, all the animals, and the plants are flourishing. I will post some rose pics – Fo has grown some insane roses.

We did make it to the zoo! We had a great time with her friend Connie. Seeing Ava-Jane with an actual proper friend of her own, rather than yet another friendly adult is very special. They both have their own things going on, but when they connect, they connect as mates. Connie and Ava-Jane were both keen on seeing the giraffes, so we saw the giraffes. And we went on the train, which they both enjoyed.

I was trying to line up the oryxes to get Doctor Doolittle’s Push-me-pull-you.

And then after the zoo, we went for an Eid meal with Shumaila’s family. We know them because Ava-Jane and Bilal became non-verbal friends at primary school and it turned out that we all lived in the same village. Eid Mubarak, Rashids and co.

Very much a side note. I have just listened to Hallelujah by Jeff Buckley. What do you play after Hallelujah by Jeff Buckley? It sometimes feels like he completed music with that song.

Well, as it turned out, not unsurprisingly, the answer was, as it is to so many dilemmas in life: Bob Dylan. Let’s start with Pat Garrett and Billy the Kid – that should see me through making my blog post notes. Knockin’ on Heaven’s Door, really is a top notch song. Yes, well, it turns out I am now having a Bob Dylan evening. Home alone and listening to Bob – things could be worse. And while I am at it, thanks to my Sonos system, and being home alone, I can have Bob Dylan blaring out throughout the house. I am sure that any Bob Dylan fan reading this will understand; blaring Bob does not always go down well.

AJ has a new talk pad, where she can construct sentences by clicking on the pictures in the little boxes. To be quite honest, it is not the most user-friendly bit of kit. There’s a plastic overlay that is supposed to align with the pictures. Having to click in areas of a bit of flimsy plastic, doesn’t feel very 2026. And it’s all on a Windows tablet. …a Windows tablet. I am one of those Apple wankers who has all the Apple kit. But I am not a complete Apple snob, I would no way judge you if you got an Android device. They are very cost effective and some have interesting features and functions. But believe me, I absolutely would judge you if you got a Windows device, unless that device was a computer. Microsoft do computers reasonably well but I don’t think they have ever managed to produce any other type of device of any sort of quality.

Of course, I can’t post any of this until Fo and Otto return, licence in hand (or not), well, I have out a bottle of Champagne in the fridge should the need arise.

Next Day

…he passed! Hurrah! What a relief all round. It would have been a very long and very frosty drive back from Wales to Buckinghamshire for Fo and Otto. Fo has put a lot into getting Otto through his driving test and has been a bag of nerves for the past few days.

We had the champagne in the sunshine. Otto HD some friends over to watch the football. We wormed and sprayed the lambs Ava-Jane is back on top form. She is watching Strictly Come Dancing to decompress after our final Star Wars film of the week. The goodies won – yay. So good week all round.

More pics!

Home again!

Just a quick update as I think my most recent posts have been a little gloomy.

I have just got back from a two-and-a-half-week work trip and Ava-Jane is in so much finer fettle than she was when I left. We were so delighted to see each other. I have only been back a few hours, but we have hugged a lot in the interim. It’s not for me to say, well OK it is for me to say – this is my blog after all. But Ava-Jane does love her Dad.

I was just back in time to hang out with her a bit before bed. I took her to bed and read her the Peppa Pig classic “Me and my Daddy”! I don’t think we had read it before but it was lying around, as luck would have it. I thoroughly approved of the closing message. It’s good to see the Peppa Pigverse is being dad-positive for once!

So, anyway, I read her the story, bade her goodnight, put on Strictly to lull her to sleep and went off to have supper with Fo. We were catching up on three weeks of Have I Got New For You, when we could hear Ava-Jane wanting attention. She made it very clear that she wanted to watch TV with Mum and Dad. She does love a comedy show! Even though she might not follow Ian Hislop’s take-downs of the Ayatollahs to the letter, she does love the laughing. So she joined us and we all laughed a lot.

The lambs have grown so much since I have been away that they are bigger than the horse!

Fo has had a very full-on time in my absence. Only about two thirds of the ewes had lambed when I left, so Fo still had all that to cope with, and obviously the job ain’t done when the lambs are born, that’s when it’s just begun.

There has also been an inordinate amount of AJ Admin to deal with, or maybe it would be a manageable amount of AJ Admin if it weren’t for the systems being so Byzantine.

Systems where you are unable to enquire about the urgent complaint you made because it is “under review”. And because the review process, the “urgent” review process, can take up to 20 working days, you are unable to enquire about what the fuck might be going on for a month and a half.

And Fo has also buggered a tendon in her arm. And that makes sorting AJ out utterly unfeasible. One does need to be fully able to be able to care for a disabled person.

So, anyway, I have been on a great trip, Madrid-Dominican Republic-Mexico, and it’s great to be back. Ava-Jane is in fine form.

Cheers all!

Lambs 2026!

I’m off on a work trip from next Wednesday until the end of the month – I’ll be getting home just in time for my birthday but in the meantime, I am abandoning Fo with an unwell Ava-Jane and only three of the ten ewes having given birth.

One of them gave birth today but not without help. The sheep are very much Fo’s domain – she communes with them, she is the sheep whisperer. She can get the whole flock dancing after her with with the merest call.

I have one sheep-related job: when a ewe has got stuck mid birth, I am the one who lubes up, and gets the lamb out. We had one of these situations this afternoon. There was a ewe who was obviously struggling and Fo went out to the field to check out what was going on. Now this would have all well and good had it not been for the fact that we had a bunch of people coming round for Easter lunch.

Fo was cooking lunch, so when she headed off to check the ewe, she had to pass on the cooking duties to me. Fo had bought an Easter Turkey. Easter Turkey??!! You might well ask! Well, I think an Easter Turkey is a Christmas Turkey that the butcher had not managed to sell at Christmas. He flung a few in the freezer to sell a few months later as Easter Turkeys. Entrepreneurial, if nothing else.

So anyway, there we were with Fo cooking the Easter Turkey but having to go and check the ewe. So she passed all the cooking instructions on to me: put the pigs in blanket into the oven, take the turkey out when it bleeps, put the potatoes into the hot oil… and so on.

But then… Fo called me… she needed me to prep for the lubing up, lamb extraction phase – the only phase in which I have to step up and do my thing. I was going to have to pass on all the cooking instructions that I had only just got my head around to Otto. Otto has become quite the chef since leaving home, so I felt confident he could stand in for the stand in.

So our meal plan read something like:

put tray of pigs in blanket and stuffing balls into oven
go to end of field and extract lamb that has a head hanging out of its mum’s jacksie
take turkey out of oven to rest
put parsnips and potatoes into oven
etc

But, and if I may say so myself, we pulled off and quite decent social event with good food and bonhomie.

so anyway, lamb pics:

this is the lamb that I extracted, shortly after extraction

this screaming log of sadness quite freaked me out on a walk with Anna

she’s not quite right at the moment… i am off on a 2.5-week work trip and don’t like it

A slightly random Ava-Jane thing:

Why is Ava-Jane at her chattiest and most eloquent when she is lying on her bath-bed? Who knows? Certainly none of us who care for her. We all note how chatty and eloquent she is when she is lying on her bath-bed but none of us has any idea why she is so much more eloquent and chatty when lying on her bath-bed than when she is lying on her mats or in bed. Oh Ava-Jane, you are, and always have been, a mystery.

You maybe can’t see it in this static picture but Ava-Jane is being very chatty and is clearly pronouncing not only “up’ but also “down”. She has been very out of it for at least the last week, so why is it that you put her down on her bath-bed than she suddenly gets fully engaged and enunciates not one but two words.

That girl, what is she like?

Anyway, more lamb pics:

Have we come home from the hospital or have we brought the hospital home with us?

So, yes, great, we are home. But, as the rather long-winded title to this blog suggests, we have got a whole load more kit back home with us. And it’s all very noisy.

We had already got the suction machine to suck excess mucus from her mouth (and nose? I wanted to suction her nose but neither Fo nor I were quite sure whether this was a good idea or not). This machine goes schluuurrrp, brrrr, schluuurrrp. We had also got a SATS machine that measures her oxygen levels and her heart rate. This machine goes beep-beep-beep-beep-…and well, in short, it beeps incessantly enough until you feel compelled to do something. But there’s not really much you can do. Once her oxygen levels have fallen below the parameters that have been set to make the machine beep, you can roll her around, give her chest physiotherapy (i.e. beating her on the back more forcefully than you are probably comfortable with but which, nonetheless, doesn’t seem to wake her up) or plug her into her new oxygen machine. Well, this machine is the worst, it goes brrrrrrrrrrrrrrrrrr, clunk, brrrrrrrrrrrrr.

The intercom, that connects us to Ava-Jane’s room, is triggered by sound changes. So it switches itself off when there is a constant sound, for e.g. AJ’s snoring. Once she gets into a regular rhythm of snoring, the intercom switches itself off. It generally switches itself off when she is watching Strictly Come Dancing unless they go particularly wild. Strictly generally manages to keep its volume levels at a fairly constant level of hysteria, so the intercom settles into that and switches itself off.

But the problem with the oxygen machine is the clunk. If it just went brrrrrrrrrrr, that’d be OK. The intercom would register that as background noise and switch itself off. But as the machine goes, brrrrrrrrrrr, clunk, the intercom wakes up again at every clunk.

So we have that.

Ava-Jane with her Lele doll given to her by kind Mexican colleagues.

And we also have the aformentioned beeping machine that goes beep-beep-beep-beep if it registers that Ava-Jane’s SATS have fallen outside the set parameters for more than a set amount of time. To be honest, I don’t know what that set amount of time is. I’d guess about five seconds but it is probably about a minute – by that, I mean, that it seems to go off very quickly when maybe it could just hold off a moment to see if AJ might just regulate herself. But, to be fair to the machines, AJ does not really ever regulate herself. If the machine says that she is short of oxygen, it probably means that she is short of oxygen, however much you might wish that it is down to a mechanical failure. I have futilely been changing the probes that we attach to her extremities when her oxygen levels are showing to be low, hoping that the problem is with the probe rather than that she is actually low on oxygen. It’s quite disheartening when you change the probe, hoping for an uptick in the percentages, and then the fresh probe gives you precisely the same readings.

This same machine has a different alert setting, more of a bleep-bleep-blippety-bleep-bleep-blippety-bleep. This alert basically means that you messed up attaching the probe to the extremity or she has kicked it off her toe and the machine isn’t getting a proper reading.

And that’s the problem with these machines – they don’t just beep when the patient is having a problem, they also beep when they are having a problem! So you not only have to go and attend to your darling child when it beeps but also attend to the sodding machine too.

Ava-Jane’s feed machine has an alert that goes off whenever there is any sort of fault, displaying “The machine needs attention”. On more than one occasion, I have read this caption and cattily responded to the machine, “And don’t we all dear?” I mean, it is rather galling that the bastard machine thinks that it needs more attention than I do! Bitch!

There are two things that you can do if you want to stop the machine going beep-beep-beep-beep, you can

Lower the parameters of when it goes beep-beep-beep-beep. Ideally she would be getting oxygen levels above 90%. But when her levels are hovering between 88-90, if you turn the level down to 88%, the machine won’t bleep. You are not really supposed to do this.
Alternatively, you can crank up the oxygen output from the machine. The nurse told us not to do this.

Reader: we have done both of these things.

So, between the bleeps, the brrrrrrs, blippety, the clunks, the schluuurrrps, and the machines actually telling us that they need attention, whether in hospital or back home, Fo and I haven’t been getting much sleep of late. I estimated that we hadn’t both got a good night’s sleep for at least a month. Fo pointed out that we hadn’t been getting much sleep for a good while before Ava-Jane actually ended up in hospital.

So, in short, we are a little bit frazzled.

The really big question is whether this is for ever. Will she be on nighttime oxygen for ever? Will that slowly progress to needing daytime oxygen. This will be severely life limiting for her, and for us. It’s heart enough for us to get away as it is because of all her toileting arrangements but if we also need to trail a massive, noisy oxygen machine around with us too, it will become virtually impossible.

Live blog action

The great advantage of this medium is that I can bring you, my dear readers, action live from the front line as it were.

Just when I was writing about the machines bleeping, the machine that goes bleep-bleep alerted me to the fact that there was a problem. I went to check and it looked like her oxygen levels were low. So I switched on the oxygen machine that goes brrrrrr very loudly and the brrrrrr woke her up. She then asked to be taken to the loo. She probably doesn’t need to go to the loo but, hell, it was something to do now that she was awake.

So here we are: Ava-Jane on the loo trying to find something to distract herself by throwing the cleaning bottles on the floor and me tapping away, making notes for the blog.

Let me correct all the above: she did a wee – she did need the loo – it was not all a pretence to get me to hang out with her. Amazing!

Oh and she is having her period number three! I still haven’t quite got my head round that. Her Tena pads act as nappies and tampons at one and the same time – which is hard to fathom as a man.

More live action:

The machine was bleeping again – her oxygen levels were at 74% (Ed: this is essentially dead). So I fired up the oxygen machine, it went, as it does, brrrrrr, I tried to put the tubes up Ava-Jane’s nose, she woke up.

She is still awake – her oxygen levels are at 99%. So what should I do? Shove the tubes up her nose to give her more oxygen when she is at virtually full saturation?

Well the answer was that her levels dropped well below 99%, so, yes, I shoved those tubes up her nose.

The machine is still bleeping… I will report back….

(Does this live blog section of the this post read as the final notes from a stricken space ship from one of the lesser known chapters from the Alien movie franchise?)

Captain’s Log: It would appear that the specimen’s oxygen levels are to be expected but her heart rate is off the scale.

The specimen seems to have taken on unexpected powers and is displaying a hostile attitude towards us.

…aaaargh, splat

If you have ever seen a movie from the Alien franchise, there are a lot of “aaaargh, splat” moments.

So where was I?

In the real world, the machine did go bleep but not because she had low oxygen levels but because she had high heart-rate levels… just like her dad!… cute!

I have just been to check her again. She’s at 99% oxygen (amazing!) and 74 BPM (great!). She spiked at 124 BPM just a while ago, it all went beep, hence my concern.

More live action #2:

I have just been to check her. All her levels are good, she is fast asleep and looking gorgeous and I have just told her that no-one has ever been loved as she is.

Talking

So, while being oxygen deprived, Ava-Jane is making great strides with her talking.

Just now she, unprompted, requested “bear book”. This is good on two levels:

Ava-Jane generally struggles to articulate two words together. We have had “three-word utterances” as an objective on her educational plan since she was at primary school. Even then, this was ambitious. If you ask Ava-Jane to say two words together what will generally happen, is that she will get the hang of the first word. And then she will get the hang of the second word but then when you ask her to put the two words together, she’ll get totally flummoxed.
Ava-Jane can repeat some things back to you but it’s quite rare that she will initiate the interaction. Admittedly, we were at the stage of the evening when I would be asking her whether she would be wanting to read the “bear book”, so she wasn’t coming up with the idea completely out of the blue. We follow quite a set routine: loo > Me: “shall we read the bear book” > AJ “yes!” > Me: “who is going to choose the book?” > AJ: “Me!”

But it showed a certain amount of initiative that she recognised this moment and asked me for the “bear book”.

(Above, I said “just now”, that was then. As ever, this blog encompasses multiple time lines – I leave it up to you, the reader, to keep up)

Fo has been working on pl- words, such as play, please and so on. There aren’t that many useful pl- words so I thought I would test her this evening – her sink was blocked so I got the plunger out and asked her to say plunger. It was far from perfect but she got the pl- spot on.

I have made this point before in this blog but I do think that troubled people should spend more time with Ava-Jane. She is good for the soul.

Hanging out with Ava-Jane is a great distraction from whatever problems you might be going through. I had had a momentously full-on work week this week. It’s Friday and I had had a full day of meetings today. I clocked off at five, decompressed a little with the Telegraph crossword and then hung out with AJ.

Ava-Jane is also the most joy inducing person I have ever known.

I do very much recommend hanging out with Ava-Jane if you are ever feeing a little morose. You can’t really feel very morose when you are hanging out with Ava-Jane – she giggles through problems far deeper than yours. I really think Ava-Jane could carve out a career as a visitor to old-people’s homes. She visited her grandmother’s home a few times and brought joy to all and sundry. Old-people’s homes are full of people bemoaning their lots; their aches and pains.

But given that Ava-Jane’s lot is probably far worse than most – for e.g. people who might not be able to walk any longer, meeting someone who has never been able to walk puts things into perspective. And what Ava-Jane hasn’t experienced in aches and pains could fit onto a poorly scrawled post-it note.

Which brings us neatly on to a bunch of fellows who really could do with a bit of Ava-Jane time. It’s all those fellows who are waging war in Iran and the wider middle-east.

Trump, Netanyahu, Khameini (père or fils) could all do with hanging out with Ava-Jane a little.

I, of course, don’t believe that. I wouldn’t let any of those fuckers anywhere near my girl.

But, hey-ho, below are my thoughts about the whole war situation.

War

That we are in the situation where the president of the United States is bombing a middle-eastern state in order to distract from a sex scandal might seem unthinkable, but we have been here before.

In 1998 (I looked it up) Bill Clinton bombed Iraq on a slightly iffy premise of needing to downgrade their weapons capabilities. This was, of course, before the second Gulf War, when it turned out that Iraq actually had no weapons capabilities whatsoever. Anyway, as many pointed out at the time, the need for this bombing was somewhat timely; Bill Clinton was in the middle of an impeachment for lying about his affair with Monica Lewinsky.

They even made a film about it, Wag the Dog. So make of that what you will.

I went to a Bob Dylan concert at around that time. I have been to quite a lot of Bob Dylan concerts over the years and, speaking as a massive Bob Dylan music fan, I can say that they are mostly quite shite.

Bob, a very old man, has been touring non-stop for years. He drags his bones round the world singing, in an ever more degraded voice that was described as sounding like “sound and glue”, even in his heyday. Now, he is barely comprehensible – he is evermore sandier and glueier. His concerts consist of him playing totally unknown songs that haven’t even appeared on the multiple bootleg albums. Or he plays his famous songs rearranged to some new musical form that make them entirely unrecognisable. You’ll be listening to something you have never heard before until you realise that you are listening to Blowin’ in the Wind in Bossa Nova style.

But every five years or so Bob will do a concert where he’ll play all the right songs and all in the right order. And I was there on one of those nights, in the Palacio de Deportes in Goya (tócame la polla – that’s a joke for the audience of one: Edu), in 1998. He played some absolute bangers and was on top form. For me (as I like to think) he played all the right songs, in all the right order.

The most affecting song was Masters of War, his masterful denunciation of the men and that rain war down on the world and send others out to die from positions of complete safety. It was the right song for that moment in 1998 and it is the right song for today, when again innocents are being bombed for the vanity of men who are far from danger.

Incidentally my dear friend Fran, a Spanish chap, does the most amazing interpretation of Masters of War – he sounds much more like Bob Dylan than Timothy Chamalet.

This blog does suffer from timeline jumps. Typically I wlll be writing about the ennui of spending time in hospital when I am back home nursing a fine glass of Rioja, like I am now, since you didn’t ask.

And while these timeline jumps might make it hard to follow Ava-Jane’s various ups and downs, that’s as nothing compared to trying to comment upon the progress of Donald Trump’s assault on Iran.

I made these notes below, all of which are probably irrelevant on the timeline that we are all currently living on. The war might have ended or, then again, it might have gone nuclear by the time you read this. Who knows? Certainly not Donald Trump.

Starmer’s position on Iran is probably the most legal and sensible he could take. He is not joining Netanyahu and Trump attacking Iran but he is letting them use UK bases for defensive operations. Iran have bombed UK bases in Cyprus. He should do something about it.

But like almost everything Starmer does, he hasn’t pleased anyone. Trump is pissed off because the UK isn’t bombing alongside him and the anti-war people are pissed off because UK bases are being used by US planes to carry out this barmy war.

And it really is a barmy war. Fighting a war without a clear objective is insane. With no objective it is impossible to know if/when you have won.

Adapted from Kissinger, speaking about Vietnam and quoted on The Rest is Politics – if Iran doesn’t lose; it wins but if the US doesn’t win; it loses.

The chance of things not kicking off properly is increasingly diminishing. You’ve got nuclear-armed Russia going at it in Ukraine. And now nuclear-armed Israel and nuclear-armed US going at it against fanatical Iran. With all these nations being led by deeply flawed men whose vanity is their prime motivating urge, the likelihood of things really kicking off increases

Oh and nuclear-armed Pakistani is going at it against fanatical Afghanistan.

We live in a tightly interconnected world. Anything could trigger a violently armed conflict for reasons that no one understands.

But being so interconnected, what we should understand is how much we rely on middle-eastern oil to fuel our lifestyles. It’s wildly over-optimistic of me, I know, but maybe this would be a good moment to consider alternatives. If saving the planet from burning in a climate induced Armageddon hasn’t, too date, managed to persuade us to wean ourselves off fossil fuels, maybe exorbitant costs to fill the car and more general runaway inflation will do the trick.

Cuba

While Trump is destroying one country vindictively with bombs and missiles he is destroying another equally vindictively but less obviously by strangling it into submission.

https://www.theguardian.com/world/2026/mar/17/trumps-explicit-threats-spark-fear-and-loathing-for-struggling-cubans?CMP=Share_iOSApp_Other

OK, well, if you are not interested in my geo-political opinion, let me share a music recommendation, Ondara. His songs were popping up on my Spotify-suggested algorithmically-generated playlists, which are frustratingly well targeted to ones tastes.

What makes me truly admire Ondara is that according to Wikipedia, he had an argument with a friend about whether Knockin’ on Heaven’s Door was a Bob Dylan song or a Guns n’ Roses song and this is what decided him to set off to the US to pursue a career in music.

World Down’s Syndrome Day

I have banged on incoherently for long enough. I normally post to recognise World DS Day but to be quite honest, we completely forgot about it this year and didn’t wear our odd socks as we should. Shame on us!

Luckily we didn’t forget the other important day round this time of the year. Otto’s birthday! And all of a sudden, Ava-Jane is the only teenager left in the family.

Not relevant to anything above but this made me chuckle

Two Weeks!

Day 10

Yes, so I am starting this blog post from about ten days into our latest hospital – by this stage it’s quite hard to calculate what day it is, let alone how long we have been there. Fo and I have seen each other for as long as the free thirty-minute parking ticket allows us. We exchange AJ data and dirty laundry for clean clothes, more feeds, more meds, car keys, a brief salutation and pass like two ships in the night.

Tonight they are doing a sleep study. They are going to see if she can maintain her oxygen levels at night on minimum oxygen and then they can send us home with an oxygen machine.

But Ava-Jane being Ava-Jane…

She’s not sleeping!
Her oxygen level are fine, (not that it counts in the sleep study until she actually sleeps) they are100%! The machine is set to beep when it drops below 85%.

…but

It’s now beeping because her heart rate is low. We weren’t studying the blooming heart rate! That’s been fine.

It feels like this might be a long night!

But hey, it’s a distraction from the first firings of World War Three at least.

And we’re not in Tehran. I imagine there will be a father lying by the bed of his sick daughter somewhere in Tehran with bombs dropping around him.

There were no Christmas trees to find in the hospital at this time of year but we found a piano.

Two Nights Later

Fo has been with AJ since I made the notes above. Last night Ava-Jane surpassed herself. She went through the whole night on no oxygen at all without making the machine goes beep. So, obvs she’d be coming that very same day. Well not obvs, it would seem. They now have to do a recalibrated sleep study to check that she can indeed sleep through the night without needing oxygen.

She had freestyled the previous night too much and hadn’t been fully studied and observed… obs… obvs.

Additionally Fo had organised a multi-disciplinary meeting earlier today. (I don’t want to gush about my darling wife too much but her ability to set up multi-disciplinary meetings makes my heart melt a little and love her all that much more – hey, don’t kink shame me!)

Getting out of hospital means getting a discharge note and, apologies to AJ’s pains, this can be the most painful part of the process. You’ll get a cheery, “You can go home now – bye-bye Ava” from the nurses (they sometimes don’t get that her name is Ava-Jane, but possibly this is the least of her problems). So you pack your bags, get Ava-Jane spruced up, pack the iPad, ready to roll. And then you hear “we’ll just get the discharge note sorted”, and your heart sinks.

Let’s just say that it doesn’t always take six hours to sort the discharge note but it has been known to, and not on just the one occasion.

Fo had managed to get everyone imaginable lined up on Zoom: social workers, teachers, carers, nurses, and doctors of various flavours. But then the ward consultant, the one who could actually write the discharge note, couldn’t make it.

So, the long and the short of it is that Fo and AJ are going to be in for at least another night. Fo’s going to come home for a few hours tomorrow to recharge batteries and prepare herself for Multi-Disciplinary Meeting – The Return.

(ed note: I probably won’t be posting this the evening of writing this, so will update accordingly).

Home (another two days later)

So we did eventually make it home. We have got a lot more crap in the house. We have now got an oxygen machine and an oxygen cylinder. I now know why it a bit of a faff to get oxygen at home. You get the oxygen machine, which is safe enough. It extracts oxygen from the ambient air, it hums quite loudly, but crucially it does not explode. Unlike the oxygen cylinders – these can explode and the oxygen can spontaneously combust. The oxygen lines that lead to Ava-Jane’s nose have a firebreak mechanism. The whole thing is a major fire hazard. After all Ava-Jane has gone through, she does not need jets of fire going up her nose. I feel that might be a bit much.

Fo think that this has been Ava-Jane’s longest stay in hospital since she was in for the leukaemia 14 years ago. It has been so great to get her home. And, well until the next time, she is fully recovered. She was in hospital for ten days just before Christmas, we thought that she wouldn’t make it home by Christmas but once she was out, she was in fine fettle and it seems that way again.

Ava-Jane looks so well that the neighbours think that she has been on holiday. She does bounce back but we do worry that her bouncebackability is reduced with each hit. So many hits to her lungs takes its toll.

Rugby

Well… the best bit of getting home is that Ava-Jane and I got to watch some truly spectacular rugby. The sad thing is that I was supposed to be in Madrid this weekend with Otto to watch the football. We were going to have a weekend in Madrid and take in an Atletico match. But as AJ was in hospital, it really wasn’t going to work me nipping off for the weekend. Poor Otto has had many times like this when his sister’s various trials and tribulations impinge upon his life. He never complains. Not once has Otto ever griped about his sister. He is a great lad.

But anyway, I spent the night before with Ava-Jane. She woke up at 4.30am and we were aiming to leave at 11am with the community nurses. These were going to be a long 6.5 hours. We got home. Tracey was here to take over, bathe AJ, Fo went off somewhere else, so it was me AJ and the rugby.

We had Scotland against France. This is a truly exceptional France team that everyone was tipping to go through the 6 Nations competition unbeaten. Scotland had lost to Italy, nominally the second worst team in the competition. Scotland had only narrowly beaten Wales, undoubtedly the worst team in the competition (apologies to my dear Welsh readers; that’s just how it is right now). What chance did they have against a France team led by Dupont, the living legend, and supported by his wizards of a beguiling style of rugby?

Well, they were out beguiled – Scotland were awesome. Playing rugby of the gods.

I am very much aware of how silly it is to derive pleasure from a bunch of people you don’t know running around after a ball, but sometimes they do this running around in just the right way and at just the right moment. And this afternoon was just one of those moments.

Ava-Jane and I needed a bit of a lift and Rugby Scotland gave it to us.

The final result was Scotland 50, France 40. 90 points in a match is pretty bonkers. Scotland had never scored 50 points against France in many years of trying. There were loads of genuinely classy tries scored.

So to put it in context – Scotland have never won the 6 Nations competition. They have never even been in contention on the final day of the 6 Nations contest. Typically they will beat England, which is great and makes up for most things, but then lose to whoever are the weaker sides in that year’s contest.

But next weekend, Scotland are in contention.They just need to beat Ireland in Ireland, something that they have not done for an awfully long time and hope that England can beat France in France. And speaking of England…

…England only went and lost against Italy! England had never lost to Italy. Oh chuckles.

Good news / bad news

Good news: There’s a thing that we are looking into – VNS. It’s described as a pacemaker for the brain and could help with reducing AJ’s seizures.

Bad News: it causes saliva and phlegm – precisely what ends up sending her to hospital on a regular basis

Good news: Fo heard about a new wonder drug for epilepsy, specifically for Lennox-Gastaut Syndrome, which is the type of epilepsy that AJ has recently been diagnosed with – essentially you get a lot of the different types of seizures that people with other kinds of epilepsy can get. That’s why it is a syndrome; like Down’s Syndrome, it is a complex combination of symptoms.

But anyway, there’s a drug that has been recently approved by NICE (National Institute for Health and Care Excellence). They’ve stretched that acronym a little, haven’t they? Shouldn’t it be NIHCE? And also, well… they aren’t always very, you know, nice. They are the ones the ones who decide whether Treatment X represents value for money in relation to how many people the treatment helps and how much help it gives. It, of course makes sense for a body like this to exist, some treatments don’t help many people who have rare conditions and only alleviate the symptoms a little and they might cost millions to the Exchequer and these are straightened times.

But when it’s your little girl who has the rare condition and anything that would alleviate it for her, if only a little, has no monetary value.

But the good news is that this drug has been passed by NICE and seems to be very effective in alleviating the symptoms of LGS.

Bad News: it has heart implications. Ava-Jane has a dodgy ticker – three major heart ops and possibly more to come.

Hmmm…

Iran War

This was supposed to be a war against religious fanatics but really it’s a war between religious fanatics. Netanyahu long ago abandoned any pretence to having a political platform. He needs to hang on to power to stay out of jail; he has a string of corruption charges waiting for him the moment he loses presidential immunity. He is propped up in power by two far right Zionist parties who urge him into war based on all sorts of theological mumbo jumbo.

The US army is infiltrated by religious fanatics just as much as the Iranian Revolutionary Guard. Troops have complained that their officers believe that the war in Iran will spark Armageddon and bring on the end times predicted in the Bible.

https://www.theguardian.com/world/2026/mar/03/us-israel-iran-war-christian-rhetoric

Is Trump waging this war just to distract from the Epstein files just as some truly shocking revelations about him have come out? Is Netanyahu waging this war and the ones in Gaza just to keep himself in power and out of prison? I don’t know. But the fact that both of these are distinct possibilities is a truly terrifying thought. What revolting men.

Some thoughts from Fo from AJ’s bedside

I couldn’t quite summon the strength to write a blog post – it has been quite the week what with one thing and another.

So Fo has allowed me to post some her thoughts and musings from AJ’s bedside.

Thoughts from the hospital – in no particular order.

1. The view from the window remains dull

2. Hospital stays are 💯 better since the invention of I-pads

3. Costa coffees are expensive

4. The shops don’t sell cigarettes

5. It’s brilliant when friends come to visit

6. Play therapists don’t offer to play with your child

7. Most of the owners of therapy dogs get more pleasure than the patients.

8. Nurses are blooming amazing.

9. I know most of the staff here pretty well now, but that’s just because I’m nosey!

10. The cold tap in the ward kitchen is hot water.

11. The hot tap is also hot.

12. If you want a drink of water on the ward, you need to enjoy hot water.

Can you tell I’m bored? Which can only be a good thing because Ava-Jane is feeling a lot better.

More musings from Ward 3.

1. Smoothies are my friend, but spicy NicNaks are my guilty secret

2. I still call Jimmy’s Cafe “Jimmy’s” even though he should have been castrated at birth. (We were inpatients the week he died and there was a massive book of condolences, even though all the staff were talking about what a wrong’un he was)

3. It’s a bonus having family in Oz during the witching hours

4. I really miss my wonderful friend Ali, who would always pop in when we were here 💔

5. The play therapist got a lesson in how to help kids & their parents 😬

6. I don’t think the play therapists like me very much

7. Good old fashioned camp beds are much more comfortable than the posh new chair beds

8. Ava-Jane’s feeding pump works better if I attach it to her button properly (wet, sticky girl & chair & floor 🙊)

9. Cutlery is like unicorn poo

10. The cold water is still hot

Luke here: just wanted to say how happy I was with the Green Party beating Refuk in the recent by-election.

A bits and pieces post

The problem with how I go about assembling some of my blog posts is that I’ll jot down a few random thoughts or updates on AJ’s well-being or, and I know everyone loves these, some political invectives and then leave it for a few days and so when I pick it up again a few days later it’s often out of date. I think I am up to date with my defections of politicians from the Conservatives to Reform but I am very much not so with Ava-Jane’s health.

It was all looking quite sunny until about three days ago, when she suddenly dipped down again. She’s very twitchy and has had a few severe seizures and her breathing is laboured again. The photos of her are from when she was feeling better over the holidays.

I will add some signposts to the bits below to try to help readers make some sense of where we are.

Ava-Jane’s Health as of mid-January 2026

So the run up to Christmas was not ideal, as you will well know if you have read the quick-fire posts preceding this one. And friends have asked about how she is getting on. Well, and here is the thing about Ava-Jane, just because she was gasping for air and with perilously low oxygen levels one day, that doesn’t mean that she will not be fully back on form the very next day. And so it turned out to be – I left hospital after a three-day stint, handing over to Fo.

And while, I feel more reassured in hospital with all the monitors, machines, nurses and so on round us, Fo is of the firm belief that if AJ can be at home, she should be at home. So, I had only just made it back from hospital when Fo called to say that they were on their way back too.

And she bounced back and has been on better form than ever throughout the festive period. She came to our neighbour’s New Year’s Eve party, which we thought would be very easy as she could come for an hour and then we could pop her back to ours and to bed while the party continued. But she was having none of it. She very clearly told us that, no, she wasn’t going to bed, she was staying at the party, and, what’s more, she would like to dance the night away. And dance she did, she saw it through until past midnight to see in the new year and then, and only, then, would she deign to go to bed.

She’s had a lot of fun hanging out with her big brother, I might even try to sneak a pic of him in.

She’s enjoyed all the socialising that goes on at this time of the year. She’s been bowling twice. This pic os from her friend Connie’s birthday party.

Being a man / being a dad

(Jan 24th: This bit is a bit random! I had a nice chunk of time off for Christmas and had time to fill, what can I say?)

In a previous blog post, and it has been quite the flurry of blog posts this month – for which I can only apologise, I rather pompously announced that I was going to write some ruminations on Daddy Pig vs Bluey’s Dad and what their differences say about the state of fatherhood today. And more than one person expressed an interest in hearing more on this – it was precisely two people but one of them called it an essay, which sounded rather grand. So here we go:

If I were to summarise this “essay” it would be – Bluey’s Dad is cool and Daddy Pig is a dork, a wally, a numpty, a nicompoop, or in Spanish a gillipollas, or any one of those slurs that imply incompetence of an unthinking, harmless idiocy. And my contention is this essay will be that we should dial down on the gilipollas and promote more of the best qualities of dads as exemplified by Bluey’s Dad – we should have more Bluey’s Dads!

Bluey’s Dad is totally invested in his two daughters. He meets them at their level and joins in with their flights of imagination.

But the trouble is that Daddy Pig is far more representative of the generic dad in fiction – a bit of a dork, a wally, a numpty, etc, et al, and so on, and so forth. He’s a figure of fun, living a life somewhat separated from the rest of the family. He’s the father in Mary Poppins before he has his epiphany (sorry for the spoiler!)

My mother was a children’s book writer and she was very sensitive to this depiction of dad’s as dorks, though she would probably not have used the word dork.

The dad in the Biff, Chip, and Kipper books is another example. And he comes from an Oxford University Press-endorsed reading programme. He’s a complete dork. Mum hated those books because of this.

Now, I am not going to argue that not all dads are dorks, nor that all dads are not, at some time, dorkish. And we play up to it. All too often, we see men floundering with childcare pleading for their wives to step in and help (I am consciously using “we” here, btw!)

Women are great at rallying round the sisterhood and being supportive of their fellow women as women and as mothers in a way that I think men are not. I love seeing my mates being good and competent dads and husbands. And I do think we need to recognise this when it happens. We need to signal goodness in men because there is an awful lot of badness on men out there.

The #notallmen hashtag that some men feel the need to add to comments below a post by a woman describing despicable male behaviour is not only trite but also unthinking – men do behave despicably and we should own it, as men. Men do behave despicably and pretending otherwise does no-one any favours.

There is a crisis of despicable male behaviour and where we might have hoped for progress through the generations, there’s a worrying trend, amongst young men, in favour of despicable behaviour. When you have role models such as Andrew Tate, and a man like Donald Trump in the White House, it is hardly surprising that many young men are expressing misogynist opinions and are behaving despicably towards women when men like these model it so loudly.

So, I will be fixing this situation through a comparative study of two cartoon, anthropomorphic dads.

We need better dads – that’s not all we need, of course, we need young men to be able to have viable prospects to look forward to, we need them to have a clear vision of who they are and where in society they fit in, and what they are worth.

But I do think that if dad’s played more meaningful roles in the lives of their children, particularly their sons, it would go some way towards alleviating some of the points above.

When Otto was born, which had been a rather long drawn out affair, and to this day, Otto never does anything in a hurry. We had started off wanting to have a water birth at home and had a very large pool set up in our rather small living room.

After 24-hours of Fo straining it was decided that not only would we not be having the water birth, we would not be having a home birth at all, and we were all to decamp to the hospital. A very decisive midwife told us that “this baby is coming out now”, and sure enough he did.

But then, once it was all done, I found myself being, very gently, ushered out. I didn’t have a very clear idea of what was to come next, but I think I imagined that we’d all be hanging out together for the night. But no, dad’s don’t hang out, they leave.

And so from that very first moment in your child’s life, as a dad, you are considered extraneous. You can now go to the pub and wet the baby’s head with all your other bloke mates, or you could go home and watch Star Wars. FWIW, I don’t think I did either – I can’t remember what I did. But I can’t help but think that it helps no one for dads to be shooed away right at the moment when they become dads.

We need dads to be involved with their children’s upbringing from the get-go and that brings me to the whole Bluey’s Dad vs Daddy Pig thing that this whole bit is supposed to be predicated on! We need to encourage dads to be good dads. So we should avoid depicting them as dorks in stories that will be influential on young minds.

Bluey’s dad is fun, he’s involved. He plays with his girls, but also cooks for them, works, and gives them sage life advice. Daddy Pig, on the other hand, never gets anything right. And he is mocked by his family. In one episode, Peppa and George (her younger brother) build a tree house. They let Mummy Pig in and they are all having a jolly old time. Then Daddy Pig wants to get in too. Peppa demands a password, this turns out to be “Daddy’s big tummy”, and they all think this is very jolly, including Mummy Pig. And funnier still, Mummy Pig stops Daddy Pig from getting back into their house until he gives the password, which, of course is again “Daddy’s big tummy”. Even Daddy Pig’s in-laws ridicule him.

Daddy Pig goes through many pratfalls of this nature – punching holes in walls when he tries to make repairs, falling off ladders, and of course, getting lost and refusing to ask for directions, because of course why not? He would, wouldn’t he? He’s a bloke! Chortle, guffaw, snort and chuckle.

But I don’t think that this infantilisation of dads serves anyone. If you are told from a very early age indeed that dad’s are dorks, that’s the message you will internalise, that’s what you will, as a man, grow into. And men do grow into it. Obviously, we know that if you tell someone that’s what they are like, that’s what they will be like. If you tell dads that they are incompetent dorks, removed from their roles as fathers, that’s what they (we), will become.

And sorry if this all sounds like a sorry apologia for men, I know we have been historically crap, but we all need to pull on the handbrake together.

The Government is proposing to bring in classes for boys teaching them to be aware of inappropriate behaviour. This initiative is partly inspired by the excellent Netflix show Adolescence that shone a focus on how young boys are being influenced in some very disturbing ways by some very disturbing people. I think this can only be a good thing, we need to consistently point out that the likes of Andrew Tate and those manosphere knob-ends are precisely the knob-ends that they appear to be. They are not the men anyone should aspire to be. But the Government can only go so far, at home, we need to be modelling the men that we want our sons to be.

We don’t want our boys to be some sort of Andrew Tate derivatives, nor for them to become Daddy Pig dads. So, we shouldn’t model that, either as knuckle-heads, nor dorks. We should all be more Bluey’s Dad.

Check out the episode where Bluey’s Dad gets pregnant: https://youtu.be/e8ULi9CC6os?si=7oHxdJCy4GOGYfgA

Compare that with this: https://youtu.be/oSEFegIcB-g?si=kqvfpd3-nw5U2Ta5

Just by the by, is there a better song than Tracey Chapman’s “Talking about a Revolution”? It’s what I am listening to right now, and it is just such a fine song, so I thought I would mention it.

I am warming up for a bit of politics further on, so as a starter related to the above:

Kemi Badenoch commented on the Labour plans to educate young boys that I have mentioned. She claimed that these classes were not necessary as the real problem with gender-based violence is people from other cultures. Even if you agree with her racist argument that it’s “other cultures” who perpetrate all violence towards women (and it really isn’t – 87% of sexual violence is perpetrated by white men – people who of course were once young white boys) wouldn’t you want to educate young boys about “our culture”? If “our culture” really is as great as she claims, shouldn’t we do our best to educate our young people about its virtues? Presumably school would be the best place for this education if they aren’t getting it at home.

(Jan 24th: There were some very random notes that went nowhere, even one about Trump. Any note about Trump goes out of date very rapidly! I’ll keep the note about the book as it vaguely relates to the bit about dads.)

Maybe I’m Amazed – John Harris

This is a great book about how a father connects with his autistic son through music. John Harris and his wife go through a lot as parents but their experience is different to ours, well of course it is. James develops, he develops differently but he develops. In one chapter, John realises that James has absolute pitch, something only 1 in 10,000 people have. A truly remarkable ability. When Ava-Jane gets a stat like that it is not generally for being unusually able, it’s more likely to be unusually unlucky.

This quote, however, did chime with me:

“I sometimes go down grim rabbit-holes full of other people’s cruelty and judgement, and nightmarish accounts of people with autism and learning disabilities being locked away. Too many of my thoughts about James are laced with fear: parenthood is always coloured by anxiety, but I envy the easy optimism many parents feel about their kids’ futures, which James’s autism seems to put beyond reach.”

Reform UK

(Jan 24th: sorry… I didn’t delete the Reform bit… in fact, I have been adding to it! I am afraid that I will be banging on about Reform. I know full well that the reach of this blog is minimal and there won’t be many potential Reform voters among the readership. But I do think we all need to put our shoulders to the wheel and call Reform out whenever we can. Many of us find it truly astonishing that the US voted for Trump again, after seeing what he was like the first time around. But I do think that making Farage PM would be very similar to voting Trump back in.)

Reform UK, who we should always refer to as Refuk, which is so appropriate given that Nigel Farage has fucked us once with Brexit and he’ll fuck us again if he ever gets in. It’s quite bold to call themselves Reform UK – because in what way do they really propose to reform the UK? They are going to be beastly to immigrants in many and various ways, we know that. Is that really a reformation in any conceivable sense? Both the Conservatives and Labour have been beastly to immigrants – it’s even working for Labour, see below.

And what have they got beyond that? Privatise the NHS? That’d be big and terrible. Lower a few taxes here and there – whoopdidoop! Wage a war on woke – purlease!

Their candidate roster for the next election will largely be made up of the dregs of the Conservative Party. The ones who lost elections, lost the whip, or jumped before they were pushed.

The latest of these is Robert Jenrick, MP for Newark – I saw someone say that it’s unusual for an MP’s constituency to be an anagram that perfectly describes them.

Two days later:

“On Sunday, another sitting MP, Andrew Rosindell, quit for Reform, citing worries about the deal to hand sovereignty of the Chagos Islands to Mauritius as his main reason.” (The Guardian)

It’s worth mentioning that this Rosindell, an absolute nobody, was a member of a group called “Conservative Friends of Russia” who were disgraced by their close association to Russia and Vladimir Putin.

Reform are stupid and wrong

https://www.theguardian.com/uk-news/2026/jan/10/two-thirds-of-uk-voters-wrongly-think-immigration-is-rising-poll-finds

Immigration is falling and this is bad for the economy

https://www.theguardian.com/uk-news/2026/jan/12/london-homicide-rate-drops-to-lowest-in-more-than-a-decade

London isn’t a crime infested hellhole – it’s one of the safest cities in the UK and safer than most large cities in the world including pretty much all US cities.

This photo is all you need to see to know that Farage is not fit to be PM of this country.

Weird History

(Jan 24th: This bit really is out of date – it’s Trump, so of course it is. He doesn’t let us breather for one second. As of tonight, I read that his ICE goons have just shot someone else in Minnesota.)

Here’s a weird one. The island of Little Saint James was sold by Denmark to the U.S.A in 1916 as part of the sale of the Virgin Islands (yes Denmark had a colony in the Caribbean – sounds odd but no odder than the UK having colonies there and pretty well everywhere else for that matter). I think this agreement also included an understanding that the US would give up its pretensions on Greenland.

The small island of Little Saint James has much been in the news of late under its nickname of Epstein Island – yup that one. The one that, as one of the few Epstein documents that has been released reveals, Donald Trump visited far more times than he claims or official flight records show. He was secretly visiting the private island in the private jet of a paedophile… make of that what you will.

FWIW, my take on the Greenland thing is that 1) he has a a warped and titanic ego that likes the idea of grabbing a huge chunk of land. 2) His political philosophy is not advanced enough to truly have a position on NATO, he doesn’t give a damn about NATO either way, but he is surrounded by people who do have thoughts about NATO and they hate it. For likes of JD Vance and Stephen Miller hate anything that smacks of internationalism and treaties that limit the uncontrolled might of the US of A. They couldn’t leave NATO without Congress giving it the go-ahead and even the supine Republican Congress people would stop at voting to leave NATO. So the other option, is just to blow up NATO by invading the territory of a fellow NATO member. And 3) he is desperate to do anything to deflect from the Epstein Files.

From the blog that brought you such arcane and mystic predictions including Brexit will be a disaster and Boris Johnson will be an appalling PM, I am betting that there is some truly dreadful stuff about Trump in them there Files.

For ref:

Little Saint James – Wikipedia

Trump travelled on Epstein’s plane more than previously thought, newly released prosecutor’s email says – BBC News

This is more random than many of my more random thoughts, but I do sometime wonder how Donald Trump and Ava-Jane can be of the same species. She is so pure, and good, and true, and well, he just isn’t.