#johnsonout

Sorry, I couldn’t help myself and I hope it’s clear from the title that this particular post on this blog about dear Ava-Jane isn’t really going to be much about Ava-Jane but will be focussed on another of the perennial topics of the blog, namely the profound awfulness of the shambling mess who, amazingly, is apparently the Prime Minister of the United Kingdom of Great Britain and Northern Ireland… and why he shouldn’t be.

She is rather gorgeous, my girl.

Though, I should really start with AJ because she is doing very well indeed.She had her extremely cumbersome body brace removed just before New Year and seems to have launched herself into 2022 with gusto. She really is in better shape than she has been in years as she is effectively seizure free and, now that her hip has been sorted, she is in a lot less pain than she has been for a while.

The combo of the Harvey leg-warmers, the psychedelic cardie that Otto found in a charity shop add up to what her uncle Matt would call a “strong look”.
Also a strong look – the MC Hammer trousers from auntie Mary!

She is still a little raw, we think, and can complain a bit when she rolls onto her side. She has also got two fine new scars, running down the side of each leg, to join all the others that she has dotted around her body. I can hear her now and she is having a grand time with her iPad. Feeling better all round obviously has other positive knock-ons as you can be that much more attentive when you aren’t having epileptic seizures and in deep pain. I always read her a story when I put her to bed and she can be quite passive but recently she has really got into reading along with me. We were reading Mr Bump together the other day and she very clearly enunciated “apple tree”: two words, three syllables… that’s a lot more than she generally does.

When I type this kind of thing, I do keep having to remind myself that I am not a superstitious person and, of course, I am not dicing with fate by saying how well she is. (Oh, speaking of which – just then she started having a major wail. Fo was in the bath and she wanted Fo. Sometimes, I can only do the practical things to try to cheer her up when she isn’t happy: loo, ketone levels, vent tummy or maybe a bit of distraction: story, Peppa Pig, Rainbow Collections {lovely album by a friend} but sometimes she just wants Fo and I won’t do. Update: poor Fo had to get out of the bath and Otto is downstairs and cheering her up).

Anyway, enough of all that, piffle-paffle, whiff-whaff, what a hot mess old Boris has got himself into, eh, poor chap?

Just a quick run through the situation for anyone lucky enough to have missed it all: it turns out that throughout the lockdowns there were various social events at No.10 Downing Street that arguably broke the rules that were being made in No.10 Downing Street. There has been a steady drip-feed of stories about these events with them getting ever closer to Johnson himself and he has denied everything – they weren’t parties, they were work; he didn’t know about them; he didn’t attend them. He has made variations of these denials to journalists and, crucially, in Parliament (capital P! Hint: Prime Ministers shouldn’t lie in Parliament) People have resigned and Johnson has set up an independent inquiry into what happened. So, yes, that’s an independent inquiry into whether there was a party in his house and whether that was against the rules that he had made.

The latest story has been harder to deny as there is an email as evidence, coming from his aide, inviting people to an event and to bring their own booze. Initially, he went for the sidestep when asked whether he was at this party that was in his own garden by saying that this was a matter for the inquiry. But today, Jan 12th he stood up in Parliament and apologised for being at this party in his own garden but… wait for it… he didn’t know it was a party!

So 40 people turn up in your garden at 6pm, 40 people bringing their own booze as instructed, there are trestle tables laden with crisps and sausage rolls in your garden, you spend, by your own admission, 25 minutes there. And the best you can come up with… in Parliament… is that you didn’t know it was a party. Doubtless it was a “do”, as in “we are having a drink’s do” or a “cheese and wine do”, the sort of non-specific posh “do” where everyone knows what the form is.

Having lied so much, so often and over so many years – you’d think he’d be better at it, wouldn’t you? And you’d think that he’d have learned to be more careful – he must know by now that he makes at least half the people he has anything to do with detest him (look at me, you could say). So if there were 100 people invited and 40 people there, that’s 50 people who might leak the story and 20 of them could have photos.

And it’s all such f***ing nonsense, Johnson’s premiership was always going to end in farce, in my opinion, and that he looks to be doomed over parties that might or might not exist like some sort of Schrödinger’s cat of social events, feels somehow entirely predictable. It’s all so tawdry and irrelevant and frivolous when frivolity is what we least need right now.

Having this frivolous man in charge at this moment in time is certainly not frivolous whatsoever, it’s almost tragic really. Just when this country is going through a massive constitutional and economical upheaval that we have opted for, which Johnson was a major architect of, we are also in the middle of an unprecedented public health emergency, which Johnson was entirely blameless for but which he managed spectacularly badly – we have this man in charge and parties are going to be the thing that brings him down. But there again… fondling his lover’s bum brought Matt Hancock down… and a questionable, self-administered eye test did for Dominic Cummings… so I suppose there are precedents – that’s just who they are.

Newsflash update: I wrote the above the day before yesterday, slightly disturbed by the aforementioned wailing from AJ, and since then two more parties have been reported and most shockingly, for some, these parties happened the night before the funeral of Prince Philip, which the Queen had to attend socially distanced because of the rules at the time. The images of her sat alone, mourning the death of the man who had been by her side for decades while our democratically elected representatives and their subordinates revelled into the night is almost enough to turn me into a monarchist.

But all this frivolity is a distraction not just for us but presumably for him too. He is a lazy man with few convictions beyond advancing his own career. He got himself elected on the promise of “getting Brexit done” and little else. And he really hasn’t got Brexit done – his oven ready deal was a turkey that he has spent the last two years trying to unpick.

And while we are exercised by Westminster underlings being dispatched to the local Co-Op to fetch a suitcase of wine, there is what might be described as Big Shit (capital B, capital S) going down, for e.g.

  • A report on the corrupt practices of the government’s fast-track system for handing out covid-related contracts during the pandemic. Turns out, giving your mates loads of cash to supply stuff they know nothing about is not the best way to go about things – who knew?
  • The crime and policing bill that’s going through. This will seriously reduce the right to protest… you might need to look up for details!
  • Cost of living crisis. Everything is getting more expensive and lots of people are getting poorer. This is not good!!
  • Oh, and I know I do bang on about this but… THE PLANET IS FUCKING BURNING!!!

The above are the things that we should be grilling the government about – “are they corrupt?” “are they illiberal?” “are they managing the economy?” “are they doing all they possibly can to STOP THE PLANET FUCKING BURNING???” But instead they are being asked “when is a party not a party?” “Can it not be a party if there are sausage rolls?” “If someone is playing music from a laptop can they really be described as a “DJ”?” (OK that last one was mine… but can they?)

We have been stuck in the Conservative Party’s psycho-drama for years now. Johnson backed Brexit because he thought it would make him PM, he torpedoed Theresa May’s Brexit deal because he thought it would make him PM. And now that he is PM, he has no idea what to do and is going to be brought down by the Party for partying. It really all so pathetic.

And now that the chief joker seems to be staggering on his last legs, the vultures are circling and we are going to be convulsed by yet another round of Tories jostling for power. This means that we are going to be governed, not by people who are doing what is best for the country but what is best for them. Johnson will, presumably, try to hang on for as long as possible, and god knows what he might do to try to hang on. Meanwhile the likes of Rishi Sunak, the Chancellor of the Exchequer, and Liz Truss, the Foreign Secretary, will be running the economy or managing Britain’s place in the world based on how well this will play out with their electorate. So he might decide to slash taxes and government spending and she will go hard on Brexit. Because remember, the electorate in this case, is not the likes of you and me, it is firstly the current Conservative MPs and, most importantly, the membership of the Conservative party. This membership is small and spectacularly unrepresentative of the wider country, i.e. it is old, white and far to the right of even the people who voted Conservative. So someone like Truss, who was a Remainer has now turned herself into a hard Brexiteer because that she thinks she needs to be to get herself into No.10.

On Lefty Twitter and in the kind of political podcasts I listen to, there is a lot of discussion about whether it might not be better to have Johnson limp on, universally reviled as he is, until the next election in order to make it more likely that the Conservatives lose the next election. Now, I am up for that as much as the next person but for what it’s worth, I really think that the priority is for Johnson to leave as soon as possible because I do think he is a particularly cankerous presence at the heart of the British state right now.

Having the likes of Johnson or Trump, people who are so clearly at the top for no other reason than their own self-aggrandisement and who will say anything in order to get there, in charge of a country for any length of time can cause long-term harm – vis: the US is still in thrall to Trump even though he provoked an insurrection.

So, yes, I would prefer to have a self-serving numpty like Truss or Sunak in charge than this mendacious haystack devoid of any scruple. Hopefully it won’t be for long.

#johnsonout

Wow, what a pretentious diatribe – apologies for ranting. I had better wrap things up with a couple of cute pics of AJ Fo took. Her school was closed so she had to do home-schooling – it looks like she was doing the teaching.

Team AJ!

Ava-Jane has well and truly got her team together, or more accurately Fo has. She has got four fantastic women looking after her through the day and having a great time, well, as great a time that one can have when trussed up in a great big brace. She reminds me of a bed-bound countess of pre-Revolutionary France, entertaining guests in her boudoir.

Each of them offers something different to AJ: Dani gives her mad hairstyles and they giggle like loons, Hannah, an ex-nurse, has been a rock for a while now and is completely on top of everything, Leah has just started but totally gets Ava-Jane and Miriam has been with us full time, living in her motorhome by the old barn, and is an angelic presence and a massive help to Fo as she is bonkers about horses. So between them, they have made this whole ordeal really quite a special time for AJ and, by extension, us.

We are missing Courtney but with the Omicron flying about, we have had to take care and try to limit a little the numbers coming and going.

With Hannah and Miriam
With Dani, Miriam and Hannah
With Hannah and Leah – The Pink Ladies

So, on some levels, Ava-Jane is living her best life as she likes nothing more than loads of attention and that’s precisely what she is getting. She seems to be recuperating very well and appears to be already in less pain than she had been before the op. Her sleep patterns are somewhat off kilter, partly because she is having so much fun during the day that she is knackered in the evenings and falls asleep early… and then wakes up early, full of grins and far too jolly for the sort of time that even the kiddie’s TV channels haven’t cranked into gear yet so she has to watch a shopping channel or 24-hour rolling news, which isn’t exactly the Tellytubbies. But even reports from Scottish villages cut off from the electric grid and the world in general due to extensive storm damage is more entertaining and better company than her sleep-deprived parents, scowling at her at 3 a.m. with the heating off as part of our economy drive so that we might as well be in one of those Scottish villages. Fo and I work an unofficial rota system – me one night, she the next, in theory, I should be more amenable to this than I would ordinarily be as The Ashes is being played in Australia, so I could, in theory, have lovely cuddles and cricket but, well, the cricket certainly isn’t lovely so far, more on that below. And anyway cuddles aren’t so lovely either with AJ in her brace – we’ll have to catch up over Christmas.

We did have one scare, because of course we did. Well in fact it was two scares in one. Ava-Jane’s feeding tube somehow got a bit stuck and there’s a worry that it can get embedded, which is not a good thing, so she had to go in to hospital to meet the legendary gastric nurse, Alison, who we hadn’t seen before but had heard good things about. Fortunately, Fo managed to wangle it so the appointment with Alison, which was in Oxford, coincided with her first, post-op check-up, also in Oxford.

Appointment with Alison is fine and she sorts the feeding tube out in no time at all. But when Fo and AJ turn up to the hip people they don’t know what they are doing there as the appointment isn’t in their schedules for another two weeks and people express bemusement as to why anyone would think that a check-up was needed so soon after the operation… Fo has at least two letters that quite clearly show that they had been requested to attend. Well, as she’s there, they decide they had might as well give her a quick x-ray and, oh dear, it looks like the hip has shifted. They ask Fo if she has been moved brusquely, she says she thinks not but phones me to ask me if she has been moved brusquely and I also think not. But obviously the moment someone asks you a question like this, you immediately think about all those times you might have moved her too, well, brusquely, have I been brusque, how do you gauge brusqueness? Anyway they take another x-ray and it turns out that the first one was at a weird angle and everything is fine! Everything’s fine!! Hurrah!!

AJ getting some outdoor time to reset her circadian rhythms…

Off for an appointment

The pictures below are Miriam’s. She is a wonderful photographer and took these pics of all the various views and beasties round the farm.

So, on to the other two obsessions of this blog: Boris Johnson and Cricket.

Boris Johnson: you’d think he’d be better at lying given all the practice he has had.

Cricket: aaaaaaaargh

Let’s leave it at that and keep all fingers crossed, prayers sent and good vibes invoked that Ava-Jane continues to go well, OK, and while we are at it, let’s do same for the cricket and hope that by the time I awake, England have taken a few wickets.

Never easy

Why can’t anything ever go right for Ava-Jane?

[the above was going to be the title for this post but I have changed it as the evening has proceeded]

I mean maybe we should be inured to things not going right by now but it feels like every time she gets fixed, something else goes wrong. She had a heart operation that was supposed to last 20 years but it has gone wrong every five years to date. She had chemotherapy to fix her leukaemia but the chemo gave her brain damage that paralysed half her body and led on to epilepsy years later. She had a gastro tube inserted, a “minor op”, and got full-blown sepsis. So obviously now she has had a hip operation and needed an epidural and she has lost the movement in her lower body!

I mean, come on!?!

Why is it that Ava-Jane has never, ever, not once, swerved that proverbial bullet! Well, to be fair, she did get lucky on the Ketogenic diet working its magic on her epilepsy but really that is about it when it comes to good news stories. I called this blog misliterature when I started it over ten years ago and, bloody hell, that was prescient, wasn’t it? Who knew how much mis there was to follow?

Actually, thinking about it, have I brought this all upon our heads? Have I somehow, through some mystical force of the blogosphere, made the misery in misliterature become a self-fulfilling prophecy?? Aaargh…

Well, no, of course not! I am not a big believer in higher forces controlling our lives in any way whatsoever, I just think that Ava-Jane has had incredibly bad luck and as someone with Down’s Syndrome, she will have general weaknesses that must accentuate this bad luck. For example, the chances having a heart defect at birth for people with DS are far higher than the average in the general population – so that’s the DS, but AJ got the most full-on version and also the version that needed regular tweaking – that’s the bad luck!

Just after writing the above, Fo called me to say that AJ wiggled her toes, which is extremely good news. It should mean that she will recover the movement and feelings that she had. Being the pessimist that I am, I was already mentally dealing with AJ being properly paralysed from the hips down.

Fo got the call that they could go up to the ward from the recovery area. But, in keeping with the theme of this blog post, they got this news just as the medical staff were on handover – that mysterious liminal time, when all the professionals suddenly disappear and the only people on call are the work placement people. They are generally a lovely lot, keen to help, but not necessarily who you need when things are going truly tits up. The upshot is that you can’t transfer to the ward while they are mid handover, delaying the whole thing further.

I would like to think that I give lots of shout outs to Fo for being marvellous. But just in case I don’t…

“Shout out to Fo for being marvellous!!’

Add citation: me

This morning, we all got up early and ran around getting everything together for Fo and AJ to go to hospital and I waved them off at 6.30 am and Fo has been on the go ever since. We had been told that the operation could take between four and six hours, so of course it took seven and a half hours. Unfortunately we are all too familiar with “that wait”, we have had to give Ava-Jane the pre-op cuddle all the while convincing ourselves that, of course, this is not “goodbye… goodbye”, once too often. It’s wearing and it has been wearing for me, here, in the comfort of our own home, but Fo has been in the hospital. Being in hospital is never much of a lark but the Covid hospital experience is truly dreadful and where Fo would have ordinarily found some fellow people going through the same kind of s**t and bonded with them, that can’t really happen any so the whole experience is a lot more lonely.

Ah yes, so, some more cheerful fodder: we have done the hair cutting challenge. I should probably list all the super peeps who have donated to Ava-Jane Gets The Chop but I shan’t. You know who you are and thanks very much and anyway, there’s a list on the webpage:

https://www.justgiving.com/fundraising/Ava-Jane-Chop

Seriously though, thanks so, so much to everyone that chipped in, it is amazing how generous people can be. We absolutely smashed our target of £550 which is the cost of making one wig and I think we should have raised enough for two wigs. So that should mean two kids who can get this help. The main pic on the blog shows AJ holding up her chopped locks in a plastic bag. The bag is still on my desk and I must get it off to the good people of The Little Princess Trust so they can start weaving.

Andrea came to cut AJ’s hair – not always an easy task!
Haircut coming together
There is nothing AJ likes more than looking at herself in the mirror!
Me laughing at her.
She laughing at me.
Ava-Jane would love to be more of a help.
Serendipitously, just when Fo and Ava-Jane were going to be in hospital for a few days, a very large box of Xmas booze that I had accidentally ordered arrived. I won’t touch it of course… Pictured here with disapproving labradors for scale.

If you have scrolled past all those cute pictures of Ava-Jane and you have made it this far, the likes of Philippa and Rowena, you must be here for the Boris Johnson shit-posting.

I don’t know how anybody else feels about the whole situation here in the UK but to me it gives the sensation of things unravelling fast. I listen to podcasts as I walk the dogs and hear something that make me think and I make a note to put this thought in a blog post some time. But things move quickly, and before I can even articulate how appalling it was, the way the Johnson government has tried to change the rules to protect one of their mates who had been totally corrupt, they themselves have confessed to being utterly appalling and promptly stabbed this dear friend of theirs in the back.

To be fair, these things work both ways and no sooner had I noted a headline about how Bolsonaro had thanked Johnson for not critiquing the burning of the Amazon than they had signed a pact to stop deforestation. Hurrah! Yeah, yeah, yeah, yeah, how much you should trust a pact not to burn down the Amazon between a massive pact breaker and a keen burner of the Amazon is very much moot but, for our own sanity, we probably need to kindle that small flicker of hope… even while the likes of Bolsonaro are kindling massive conflagrations of the rainforest.

Again, in the interest of fairness, we can probably say that Cop26 was not a complete disaster. But to me that image of Johnson asleep in a talk, maskless next to National Treasure (capital N and capital T) David Attenborough speaks volumes about the man. He’s asleep on the job and shows no respect for others, I mean FFS, it’s David Attenborough! Imagine killing David Attenborough…

Awkward moment Boris Johnson confronted over being maskless next to  Attenborough - Mirror Online

Of course in the great scheme of things it probably doesn’t much matter whether he is wearing a mask or even awake on any given occasion. Likewise, the fact that he took a private plane back to London after giving his speech is not a good look but it will not have affected the heating of the planet one jot.

These things matter little, the actions of one man either on Covid, though of course he was careless about that before and it nearly killed him, or the climate crisis is irrelevant. It would surely have some sort of symbolic force, as the Prime Minister, for him to wear a mask or to try to reduce his carbon footprint and take the train. But what matters a good deal more are his policies and, of course, he can make a good speech about the importance of climate mitigation, his wife probably wrote it for him and he has got the gift of the gab when he decides to turn it on, but only a few days before, his Chancellor of the Exchequer presented a budget where climate mitigation was nowhere to be seen. Instead, Sunak included things like a cut of taxes for internal flights, so it wouldn’t just be his boss choosing this form of transport that is so damaging to the climate and so unnecessary but lots more people will be doing so too because they have been enabled to.

I am very much not a nationalist and you could even say I am unpatriotic, vis: I support Scotland in the rugby, I quite admire Maradona’s handball goal, I mean, I don’t even wear a poppy and I actually really enjoy not wearing a poppy but even I am disgusted by what Boris Johnson is doing to this country. We look ridiculous in the eyes of the world and I would have thought that that would have bitten deeper into the soul of the patriots. That the Prime Minister of the United Kingdom needs to state that the “UK is not a corrupt country” is amazing, that’s the kind of thing that the leaders of humongously corrupt countries say.

We’re doing a charity thing!!

October was #downssyndromeawareness month and November is #epilepsyawarenessmonth and as AJ has both, all I can say is… people be aware, we need more wares. But, counterintuitively, we have decided to raise money for something completely different that has also affected Ava-Jane – wigs for kids who have lost their hair.

When AJ had leukaemia, almost exactly a decade ago now, she lost all her hair. As she was only two at the time and has never been massively self-aware, this did not affect her at all. But obviously for older kids this is a terrible thing, when they are not only going through a hard time healthwise, they also have to endure this knock to their image. The Little Princess Trust collects hair and turns it into wigs for these children who have lost their hair.

AJ hasn’t been to a hairdresser since the beginning of lockdown and has grown quite an impressive mane by now. This is one of the more recent pics that shows quite how long it is.

As it was already pretty long, we decided to keep it going until it reached the 14 inches that you need for the wigs. And she is pretty much there, I did her a pony tail yesterday and even with a nice bit left, she has hit the mark. This works out quite nicely as she has got her operation rescheduled for November 18th. So, we are going to go for the big chop sometime before that and see if we can raise a little money for the trust alongside. We have set our target at £550 as this is the amount it costs to actually make a wig. Then hopefully with her hair and the money we raise, someone will be able to get a wig, which might help get them through a difficult time.

Obviously no one should feel at all obliged but if you have a few pennies going spare, anything would be very gratefully received.

I posted the site a few hours ago and already we have had quite a few donations, so I can take the opportunity to thank Marion and Roger, Chloe and Nathan, Michele, Rowena, Lizzie, Alison, Rupert, and Dolly Betty Davies. That’s so massively kind of you all.

This is the link to follow:

https://www.justgiving.com/fundraising/ava-jane-chop

I have been heating up for a big politics rant and keeping noting more and more outrages of the Prime Minister and his government and I really should get them off my chest before I explode but I am not sure where to start, so I will leave it for another day much to everyone’s relief, I am sure!!

We have been breached!

There have been some great photos of AJ over the years, many from Paula, this is another one. Credit: Fiona Baxter

After months of having been ultra careful about the whole Covid thing, at long last our defences have been breached, and at the most inopportune moment, we have got the virus in the household as Fo has had a positive Covid test. 

To me it feels a bit like in a Zombie movie when a group of survivors have been holed up in some bucolic retreat where they are safe from the dreaded infection but live in constant fear that one day their protective ring will be pierced and their idyll come tumbling down.

OK, that’s a bit over the top but this has thrown a considerable spanner in the works. Ava-Jane was supposed to be having her hip operation on Tuesday. This operation has already been delayed by 18 months or so, presumably mostly due to the fact that our health services have been swamped by this benighted virus. AJ needs this op – her leg has essentially become detached from the rest of her body and presumably this hurts as much as it sounds. Ava-Jane isn’t a grumbler, in fact she is as stoic as they come but she is obviously in increasing pain and she really complains when you roll her onto her bad hip. 

The operation will put the ball back into the socket and rebuild the socket to keep everything in place. As we have already experienced during the pandemic, only one person is allowed to accompany AJ during a hospitalisation and that person was going to be Fo. AJ will be in a cast for six weeks after the op that will keep her in a sitting position continuously, so it will be quite full on toileting her and keeping her amused for the duration. I was going to take some time off once AJ was back and we also had our fab carers lined up to help out. Well, that was the plan, at least.

Fo and AJ had to have Covid test on Sunday and Fo came up positive. This means that the op could not go ahead and Fo has had to go into isolation. AJ can’t go to school and we have got all the care set up for next week… after the op, or the not op as it were. So I am having a few Ava-Jane days.

The currently clean amongst us, i.e. me, Otto and Ava-Jane have just all done a PCR test and are awaiting the results (Huzzah – my results came through, literally as I am writing this and I don’t have the virus, so that, at least is something! Between you and me, I think I might have been saved thanks to the fact that because I snore so much, Fo covers her head with a pillow – masks work people!)

So I think if we were in that Zombie movie we would be at the stage when we could have an emotionally-charged scene during which the father instructs his own son to shoot him if he shows any signs of the infection.

To take this Zombie thing a few unnecessary steps further, the dialogue could run something like this:

Me: when the time comes, you’ll know what to do, won’t you son? [father points to rifle propped in the corner of the room]

Otto: No, Dad, I could never do that.

Me: You must! You must do it to keep yourself and your sister safe.

AJ: Me! [she beats her chest]

Otto: Well you couldn’t do it, could you? [his eyes turn to the room upstairs from where you can hear muffled grunts and incoherent mumbling]

Otto: You couldn’t shoot Mum and I won’t shoot you. We’ll think of something. I’ll keep you all alive, see, see if I don’t.

[Otto adopts his, “I am looking at my destiny” pose]

This pic is from 2014 – Otto randomly struck this pose and when I asked him what he was up to, he told me that, “I am looking at my destiny” – I think it is a Star Wars reference.

Of course we haven’t really got Fo chained to a wall in an upper chamber like some latter day Prince Ruprecht or even a Mrs Rochester. No! Thanks to the magic of mobile telephony, Fo can send me instructions very coherently indeed from deep within her isolation cell! I am not sure for how long she will find my little quips of “room service” every time I leave some sustenance at the door absolutely hilarious.

It is quite salutary to remember what it is like to look after AJ alone, full time. It can be quite mentally stressful but that’s offset somewhat thanks to AJ being such fun to hang out with if you have the time to dedicate to her but what it inescapable is the physical strain on an old man’s body looking after her entails. I am 52 now and not every 52-year old has to carry a 12-year old around and the bugger about 12-year olds is that they become 13-year olds, just as 52-year olds become 53-year olds. So she is growing while all the time I am becoming increasingly decrepit.

I like to set myself achievable goals when it comes to parenting. And Goal #1 has always been: just keep the little darlings alive. Anything over and above that is frankly over-achieving. So I am quite happy letting Ava-Jane watch TV while I try to catch up with things. Activities-wise, we do quite a lot of rolling around, singing and shouting and that kind of thing but not so much in the self improvement line like art or baking. She has been a bit under the weather and had a few seizures of late – obviously we are hoping this is not Covid and is just the bug that Otto and many other children have had since their return to school.

Remember “bugs”, good old fashioned “bugs”? Infections tear through educational establishments and have for years. Unsurprisingly schools in September 2021 are hotbeds of all sorts of infections – Covid and otherwise. The kids have all gone back to school with every single protection apparently dropped and only a few of them having had at most one vaccination. So Covid is rife but also, as they have been shielded from all the other bugs that kids commonly get for almost two years, they are coming down with all sorts of other things, some of which even look a bit Covid-y. For e.g. AJ is coughing tonight but Otto has been coughing too and has had consistently negative lateral flow tests.

Ava-Jane with her new friend Rosie, her doll based on real-life Rosie, a most beautiful little girl with Down’s Syndrome. Rosie doll has been made to DS specifications, like her lovely almond eyes. She has also got “rainbow eyebrows” – I didn’t know it was a DS thing that AJ the most perfect eyebrows – as you can see here.

Fo seems to be following the pattern for a double vaccinated person, i.e. feeling a little crap and mysteriously losing her sense of taste. I made a hideous beef-in-black-bean sauce dish this evening, where I had not only overdone the black-bean sauce but I had also put in too many extra chillis. Beyond any government-mandated PCR test, if you couldn’t taste this utterly revolting, but undeniably flavoursome, raging mess, we could safely conclude that you had Covid. Thankfully I can report that not only has my PCR test come up negative but I could fully taste my beef-in-black-bean sauce for all its horrors. So, I am clean and Otto doesn’t have to shoot me, which is nice.

AJ does miss her Mum – Fo came to say hi to her through the door and AJ wasn’t very happy that they couldn’t have a hug. We all miss her – I can just about cope with the basics when it comes to all AJ’s various meds, feeds, and so on but some things can be quite tricky. We had to patch Fo in yesterday evening via FaceTime to guide me through a particularly complicated manoeuvre on AJ’s new gastric tube site.

So here’s to hoping that we get through this as quickly and cleanly as possible and that her op can be rescheduled swiftly and that we are now not at the bottom of the list again below every other poor person who has been sitting around in agony for these past few months.

If you are interested in checking out the Rosie Doll, you can see them here: https://uk.lottie.com/collections/dolls/products/rosie-boo

And if you have never see the red trousers site, you can find it here: http://lookatmyfuckingredtrousers.blogspot.com/

Holidays!!

I am not going to be able to post many pictures of our actual holidays as most of them include teenagers and one is not supposed to post pics of teenagers without their express permission, or at least that’s what Otto tells me (I will post a long-distance arty one of the surf kids).

Big Wednesday… but in Devon… and with boogie boards mostly.

We had a lot of debates on how to organise ourselves to get away. We rented a cottage in Devon near some dear old friends but it wasn’t really kitted out for the kind of accessibility Ava-Jane needs these days, which involves ramps and hoists, for any extended period of time. And it isn’t so much AJ that needs this tackle, it’s us, so that we can manage. As I have said before, it is great that she is putting on weight but it does make lifting her increasingly hard on our ageing backs and muscles.

At one point I was going to stay at home, off work, with AJ, which would have been fun in some ways, but Fo realised that I really needed to get out of the house. Otto gets out quite a bit with school and so on and Fo and AJ have fun hospital visits but I really haven’t been out an awful lot since Feb 2020. I think I had had one pub visit and basically try not to go much beyond the village shop.

The combination of having been locked up for so long, the fear of the virus and Ava-Jane having evolved to need assistance more and more does mean I view time away from home with trepidation.

But Fo was absolutely right, as she so often is, what an amazing woman I married, I am so, so lucky (and no, I haven’t just added this bit as an update after she read the blog!!) – it was just what I needed. Time with my old buddies Ali and Amber and their families, including kids of Otto’s age, who he has known for years and gets on really well with. We had a lot of fun. Fo and AJ did come down for a couple of nights and it was tricky but great to be together. AJ’s godmother baby sat, so Fo and I managed to go to a pub together for a night out with mates – mad!

So now we just have another four weeks to fill, until we can pack the dears back to school again! Oh, dear god, I do hope the schools will be open come September and we have not lurched into yet another lockdown. It does still feel like there is a lot of it about – there certainly is globally and here in the UK, it seems to bounce back every time there are mass gatherings of one sort or another – the football championships, festivals and so on. And with the kids still unvaccinated here, return to school would presumably constitute such a mass gathering.

Why 12-17 year-olds in other countries can be safely vaccinated but not here, isn’t really clear. We have been contacted to get AJ and Otto booked in as “vulnerables” but no date for when this is going ahead.

But now is not the time to criticise the government’s Covid strategy. Now is the time to slam their Climate Change approach. The time for this is very much now because this year, in November, the UK is hosting the Cop26 UN Climate Change Conference. At this conference, the gathered governments of the world are supposed to lay out all the ways that they will stick to the carbon reduction promises that some of them have made. At this conference, as host, Johnson is supposed to do a couple of key things: to get some crucial countries, like China, India, Russia, Brazil, Australia to come up with proper plans of their own and to find the money to support the poorer countries that will be most affected by climate change. This is a good article.

Is Johnson the best person to do this? You won’t be surprised to hear that I don’t think he is. His government has just cut the UK’s pledge of 0.7% of GDP for Overseas Aid. This is very much a Johnsonian piece of performative policy making – something that will have very little practical effect on what it purports to be doing, in this case saving money in financially difficult times (it’s a percentage precisely so that we pay less when times are difficult) but that plays well to what he perceives as his audience. These kinds of policies often have truly horrendous unforeseen outcomes, in the case of Overseas Aid many people will die when the lifeline that this aid provided is cut off to make a non-saving.

In any case, Overseas Aid is not just some happy-clappy, woke nonsense, there is a hard edge to it.
If fear of being swamped by immigrants is your fear of choice, the best way to really stem the tide is to make the countries of origin better places to live. If you are looking at building wave machines in the English Channel to drive dinghies back to France as Home Secretary Priti Patel once did, you have already failed. The reason there are so many Syrian refugees right now is because Syria is a shit place to be right now and the more shit places there are, the more refugees we will be getting. And even more than war, what is going to create a truly huge wave of global migration is climate change. A lot of the countries that will be hardest hit by climate change are countries that are already poor and struggling in one way or another. The more we can mitigate things by drastically cutting our greenhouse gas emissions to keep warming as low as possible and by providing support for the most affected areas to adapt to a changed climate, the fewer people will be driven from their homes and risk their lives trying to enter inhospitable countries.

Priti Patel plays her hard-nosed role in Johnson’s performances to perfection. She is also involved in one of these vacuous performances where Johnson wants criminals to be in “chain gangs” wearing hi-vis jackets as penance for their misdeeds. This will do precisely nothing to reduce crime but it will, he hopes, warm the cockles of the cold hearts of who would actually like to bring back corporal punishments for miscreants.

While this approach to crime reduction is pretty shoddy, when applied to climate change this performative style is disastrous.
So we have Alok Sharma, the minister in charge of the Cop26 talks the talk, saying that “we are on brink of catastrophe” while his own government is licensing new oil and gas fields. And he flies around the world to glad hand all and sundry in order to project the post-Brexit, “Global Britain” facade. Just as an aside, when Alok rocks up in Brazil to talk tough, but also presumably to smooth a trade deal, with Bolsonaro and says, “Hey Jair. May I call you Messiah (that’s his middle name)? You had better stop burning down the Amazon or we won’t trade with you,” I wonder how much Bolsonaro quakes in his jackboots. A man like Bolsonaro will only pay attention to the big boys: the US, China, the EU.

Then we have Allegra Stratton, who was briefly installed as a US Presidential-style Downing Street Press Secretary, complete with an expensively decorated conference room, festooned with Union flags, reassigned to be Johnson’s climate change spokesperson, when suddenly styling oneself all US President wasn’t such a great look when the then holder of that particular office was stoking an insurrection against the Capitol. Allegra, in her role as spokesperson for these crucial climate change talks, has been giving out advice such as telling people to not rinse their plates before putting them in dishwasher or to freeze leftover bread. But she admits not really fancying an electric car because she might have to pause for a bit on her drive home to see her mummy.

In our role as hosts of these talks we need to be crystal clear, bold, honest and perceived as trustworthy. One of the key things with these climate agreements is trust. It is virtually impossible to police the emissions of any given country and presumably there are no punishments that can be meted out if a country breaks its cap, you can’t put China in a high-vis jacket and make it pick up litter on the side of the road. Unfortunately we, as a nation and Johnson, as a leader in particular, have burned our international credibility considerably during the Brexit debacle and we continue to do so.

Brexit was not over after all, it rumbles on in the interminable wranglings over the Northern Ireland protocol. Even I am thoroughly bored of writing about Brexit. If only Johnson’s promise to get Brexit done could was true but he has lied to so many constituencies, telling the people of NI one thing, signing something else with the EU that he can’t lie himself out of this one.

What we need is bold action taken at government level and working closely and harmoniously with as many nations as possible. And the sad thing is that even writing that sentence feels hopelessly utopian.

But haven’t we glimpsed something during the terrible past few months? Something that could maybe give us some hope. We have proven ourselves to be more adaptable and conscientious than our own governments gave us credit for. There was a certain communitarian, “we are all in it together vibe” (obviously among the luckier people with jobs, gardens and so on). And we have shown that we can take actions that would be key to reducing carbon emissions, specifically travelling considerably less both as commuters and holiday-makers.

So, hey, that’s what we should focusing on as we come out of the pandemic and demanding leadership of our leaders – not empty promises.

Ooh, that was a bit tub thumping – I had better post a cute pic of AJ.

AJ with Eddy from next door – labradors don’t make great lap dogs.

Listening to the cricket

She’s 12!

Everyone on Facebook has seen this pic, I know, but it is fabulous.

Another year slips by and Ava-Jane, like the rest of us, grows another year older. The fact that this is not exceptional, is in itself, exceptional. Passing any milestone for AJ is always in some ways portentous given all the obstacles that have been strewn on her path and now with her extremely crap new wheelchair… gravel constitutes an obstacle.

And because we received Ava-Jane’s leukaemia diagnosis (i.e. when it all started going properly wrong) two days after her second birthday, these dates represent more than one anniversary. It is quite amazing that it has been a decade since that date. That was the day when we went from being the parents of someone who had had a heart operation that should probably fix her for at least 20 years and had Down’s Syndrome (we had got to know the DS lot and they were a gas), to being the parents of someone with a life-threatening illness, the after-effects of which would end up with her in a wheelchair, brain damaged and developing a complex epilepsy.

I made a list the other day that I called: Six things that would mess your life up individually (it wasn’t “mess” originally, but this is a family blog…)

  • DS
  • Leukaemia (nasty one)
  • Multiple heart operations
  • Stroke-induced right-sided paralysis 
  • Various flavours of severe epilepsy 
  • Non-verbal (to all intents and purposes)

Having a child with any one of the above would be a dramatically life-changing experience and we have had them all. Though, to be honest, this is probably not a cumulative thing. In for a penny, in for a pound, as it were. 

When Otto was about two, so after Fo had had puerperal psychosis and gotten over the ensuing depression, he got really nasty eczema. He scratched the backs of his legs until they bled and this felt like a life-changing event – we got him some expensive cotton dungarees and that seemed to clear it up. It hasn’t been quite like that for AJ – no expensive cotton dungarees for her.

Right, I had better chuck a cheery birthday pic in as that was getting a bit morose.

It’s quite easy to forget the person that lies beneath all the layers of problems that she has, even as her parent. Ava-Jane has just turned twelve, meaning that she will be a teenager by the time this blog clocks on to celebrate her next birthday. And beneath it all, she is growing up.

As you can see in the pics, we had a small party for AJ to celebrate the passing of the years. Two of her friends from secondary school came. What with “one thing and another”, AJ hasn’t been at her new school, which she started in September, very much this year. So, it was great to see that she had made such a connection with these two girls. They were her mates and they all really liked hanging out. I think that Gemma and Sophie are a little older than AJ and more vocal and so on and you could see they really looked after her.

Fo noticed that when she asked, “who wants cake?” rather than answering “Me!”, as she would ordinarily do, Ava-Jane, gestured towards Gemma and Sophie, very much playing the grand hostess. One of her teachers came to the party too, which was amazing. Again, what with “one thing and another”, we haven’t had much connection with AJ’s new school so it meant a lot to see Ava-Jane with her people. She is now a Secondary School Girl, capitals Ss and G, and she really is going through that transition.

Oh gosh, I said “transition”, didn’t I? Yup, she’ll be turning into a woman… she is turning into a woman! The less said about that, the better.

Returning once more to what with “one thing and another”, our care arrangements for AJ, have changed considerably, so rather than having someone living in, we have two carers who come for a few hours on three days. Luckily, these two women are amazing and are great companions for Ava-Jane as she evolves into a young woman. Courtney did the hairstyle that AJ is sporting in her birthday pics, that’s her in the picture on the blog.

We do have readers on this blog from around the world, so apologies if any of this is irrelevant to your current lived experience. However, it is ironic that while Covid is a hashtag #globalpandemic, we do seem to be experiencing it at peculiarly local levels. Nations have been tackling it each to their own and here in the “United” Kingdom, this has meant that each Nation of the Kingdom has dealt with it independently.

And England is about to go it alone. PM Johnson has just announced that we are going for the herd immunity approach that he has always yearned for, with its faint whiff of the “survival of the fittest”. There is something undeniably of the eugenicist about him, don’t you think?

The Prime Minister has announced that although we are topping levels of cases per day that we haven’t seen since the turn of the year, this is the moment to remove all anti-covid measures. And by “all anti-covid measures”, what I mean is: ALL ANTI-COVID MEASURES, FFS!!!! So we are all off to enjoy ourselves in packed pubs, and while we might be as jabbed as you could possibly wish for, we will be being served by unjabbed, unmasked, Delta-riddled young ‘uns coughing Covid over our draught beers to be taken home to be shared with the sheltered and the vulnerable – that’s the Covid being shared by the way, not the draught beer… I wouldn’t share my draught beer with anyone, let alone the sheltered and the vulnerable… I am not a monster!

But hey, Boris Johnson hasn’t put a foot wrong throughout this whole debacle, so I think we can all rest in peace and that this time (unlike all those other times) when he says it’s all going to be fine and we can open up and we will never ever have to lock down again, this time, we can be sure it’ll be true and nothing will go wrong, because what could possibly go wrong, right?

For one reason or another (possibly the increased awareness of one’s mortality and our but fleeting passage on this earth) we have done some family photos, which I am sharing for your delectation.

Various Grindlays, Harveys and related
Various Baxters, Parkes and related

Come on England!

Richard Dawkins!!??!! Richard Dorkins, more like!

So there is an attempt to cancel Richard Dawkins for some exceedingly stupid things he has said about Down’s Syndrome and the advisability of mother’s to abort them. Various groups I belong to are supporting a campaign to persuade his publisher to rescind their contract with him.

The best place to start if you want to catch up with this would be this blog post that lays it all out nicely:

I am generally very wary of the concept of cancelling people. When I hear that J.K. Rowling, a very fine feminist woman and creator of wonderment, should be cancelled because of some opinions, which sit uneasily with some, I would question the cancelling concept rather than Rowling herself. For what it is worth, I disagree with her about the trans issue but that is an issue where I have little skin in the game and the opinions of a straight, white guy in that debate are of little consequence.

Being “mr majority”, I have not had to experience the feelings of a woman in a misogynistic world or of a black person in a racist world so it might be rather easy for me to loftily oppose cancel culture when I do not know the profound hurt the words of a JK Rowling or a Bryan Adams can be. I have only ever observed from a position of an interested, and hopefully, sympathetic observer when it all kicks off with someone saying something offensive and the ire of the online community is turned against them and there is a demand for their voice to be silenced. So it is very interesting to be in the middle of one of these storms when it is “my people” who are being attacked. Someone is implying that the world would be a better place if my Ava-Jane was not in it… and that does piss me off. 

But pissed off though I might be, I still think that there are better ways to deal with the likes of Dawkins than to try to rain capitalist hellfire upon his head and demand that his publisher rescind their contract with him. I work for a publishing company and I know that this approach will not work.

To quote my own gospel, and much to Dawkins’ disgust, I am sure: “I say to you, that likewise joy shall be in heaven over one sinner that repentsmore than over ninety and nine just persons, which need no repentance.” Luke 15:7.

Wouldn’t it be great if we could get Dawkins to repent?

The approach I choose to make as Ava-Jane’s advocate, is to show quite how much she does not make the suffering in the world go up, to paraphrase his words. She is a bit of a burden, of course, but she brings a special sort of joy, which is what this blog has always been about.

This blog has always been partly about giving visibility to Ava-Jane. She can’t really be an advocate for Down’s Syndrome as she has so much more that just Down’s Syndrome. But she can be an advocate for the “a bit fucked up in lots of different ways” people. And if Dawkins doesn’t think that people with DS should exist, what would he think about people with ABFUILODW? But speaking for Ava-Jane as a person with ABFUILODW (you can see I quite liked that), I can categorically say, and I am sure everyone reading here will agree, the world, Dr Dawkins, is most certainly better with AJ in it. 

So, I joined in on the gentle pile-on of sending dear Professor Dawkins… Dorkins (snarf) loads of “Richard, or may I call you Dick?” content of wonderful, clearly not adding to the suffering of the world, people with DS. I posted my go-to video of Ava-Jane laughing like a lunatic – we do this a lot together but this one is on YouTube.

So anyway, that’s the approach that I prefer: telling him, “don’t be a Dick you Dork, you probably contribute a great deal more to the suffering of the world by pissing off all my darling Christian friends and family and now you have pissed me off, and I am an atheist! So realise you are wrong, admit it and shut up.”

All kids with Down’s Syndrome are happy all the time (AJ modelling for Emoji face-recognition)

If you feel you don’t agree with my approach, the link below is to the campaign the mum of a gorgeous girl with DS, who I am in touch with on Twitter has started a campaign to revoke Dawkins’ Emeritus status at Oxford University.

Ava-Jane continues to be on top head form. She has an occasional seizure but otherwise is very much on the ball. She does give me a lot of crap, I have to say. We have our two sessions in the day. I get her up in the morning, so we have a bit of a cuddle then, as the coffee boils. Then, I quite often put her to bed and we have a whole process of deciding who is going to choose the book we are going to read (it is going to be her – it has always been her and it will always be her forever more – we play act that I might have some agency in the question) and when I have succumbed to her will yet again, we select a Little Miss story. I hesitate to poke the whole patriarchy question but the Mr Men books are far better than the Little Miss ones.

But outside of these times, Ava-Jane can be positively beastly towards me *at this point your faithful blogger is flouncing or at the very least pouting*. If she has got anyone better to hang out with like Courtney or Helen, or most particularly, Mum, she just waves me away and with, what for someone who is essentially non-verbal, a rather perfectly enunciated “bye-bye Dada”. It is wather wude, isn’t it?

I specify that AJ is doing well in her head because she is not doing so well body-wise, specifically at the moment it is her hips. Basically one of her legs has been floating further and further away from the rest of her body for a while now and it’s now pretty much fully detached. And so, of course, she is in a lot of pain. Now, no one can endure pain like Ava-Jane, she is as hard as nails, so you know that if she is complaining, it’s bad. And we are all in pain, I have a pain in my arm, Fo has a pain in the knee and Otto has an existential pain – well he is a teenager (he’s great but we shouldn’t go about it online). So any sort of manoeuvre is painful to one or more of us.

OK, just a smidge of politics, if I may. Today is Thursday May 27th, the day after Dominic Cummings sprayed poo liberally on his erstwhile political masters.

I made a couple of notes for one of the blogs a week or so ago as I walked Nonny round the field. This is what I said:

For a long time Johnson-sceptic it is endlessly fascinating to wonder when the penny will drop…

What I meant by that was, when will people realise quite how unfit for office this man is? He was unfit to be a columnist and was fired from that job, he was unfit to be in the cabinet and was fired from that. He was clearly unfit to lead a campaign that would fundamentally remodel how this country worked because he was only to happy to lie to win.

I have banged on about all of this ad infinitum but it’s not just the likes of me who think that he is unfit for office, it is every single person who has even had anything to do with him apparently. It is Max Hastings, his editor on the Telegraph, it is Michael Howard, possibly the most right-wing Conservative leader to date and now it is the shadowy genius behind Brexit, Dominic Cummings who is telling us all very clearly that Boris Johnson is not fit to organise a piss up in a brewery.

What we have heard from Cummings is obviously massively suspect, he is no friend of the truth and just yesterday we got yet another version of his whole Barnard Castle venture. But there was one thing that was very clearly true because we all saw it play out – Boris Johnson and his government did not learn from their mistakes. And that is fucking bollocks. That everyone was wrong-footed in March is absolutely understandable, but if by September, nothing has been learnt, that’s when we need to worry. It’s clear that time and time again Boris Johnson, not just “his people”, but him took decisions that directly contributed to thousands of unnecessary deaths. He has decided time and again to delay lockdowns, against the advice of the informed, and these delays of his have demonstrably contributed to the number of fatalities we have seen.

These are not worries that can be dealt with in an enquiry that Johnson has pledged to set up, which will, of course not report back until after the next elections. We are being governed by a man who wanted to be the mayor in the movie Jaws. (for those out of the loop – the mayor in Jaws decided to keep the beaches open even after there was clear evidence that there was a man-killing shark about). And for christ’s sake, just on a pop cultural level, who the fuck aspires to be the mayor from Jaws? It’s like wanting to be the Emperor Palpatine… actually don’t encourage him.

I have to be honest and own up to a visceral and age-old dislike of Boris Johnson, there was a see-saw incident between us when we were young, so I am sure this colours my assessment of the man. But we have, Cummings, the person that Johnson collaborated with on Brexit, the person who Johnson elevated to a position of immense power, telling us that Johnson is not fit for office. Telling us that Johnson has severe character flaws that should mean that someone like him should not be able to become PM. And telling us that specifically Johnson’s character flaws make him unfit to decide when to impose a lockdown.

We have got this Indian variant here now, that’s for sure. Johnson got it wrong on the 1st lockdown, fair enough, he then got it wrong on the 2nd lockdown and again on the 3rd lockdown. I am not statistician but I reckon those odds make it look like it will be getting it wrong on a 4th lockdown.

So, I think we should think for ourselves and be cautious. This variant is spreading and spreading fast and I don’t think our government will be across it because they are motivated by something other than caring for the well-being of the nation.

Lambs in foreground by sunset with oak trees and portakabins in background

All the above is flim-flam really. Of course, the only really big news is that Atletico de Madrid are Campeones of the Spanish Liga – Olé!

Lots of little cute things

It certainly comes to something when Ava-Jane is like the twenty-third cutest being living here, more than that if we count the neighbours’ goats. I think my calculations are correct, that should be twenty one lambs and one newly arrived black labrador puppy.

Anna Knoxville-Tennessee (we’ll come on to the name) is Nonny’s niece, though in this case, I am not sure that blood runs thicker than water. Ana has melted all our hearts except that of her own aunt. Nonny is that aunt who holds the child, with something coming out of at least one orifice, at arms length and tells you that, “This is precisely why I choose not to have children.” Nonny is giving us very meaningful looks along the lines of “Is she going to be staying with us for long?” or “Now it’s in my actual bed.”

But Anna is so cute that she has even superseded the lambs this year. Oh yes, her name, “Anna” (I am not sure whether she prefers to spell it with one N or two), is essentially because it should be easy for Ava-Jane to say (and it’s a palindrome like AVA and OTTO). Otto had a firm stipulation that the puppy should be named after a place in Tennessee – we don’t know why he stipulated this, I must add. So she has got a name and a surname and a double-barrelled surname at that and she should be addressed by her full name at all times.

So, the lambs… we had lots, more than ever in fact. Fo does all the work, but I have one role, when a lamb has got stuck and someone has to apply the lube and get their arm in deep… that someone is little old me.

One of “Luke’s Lambs”, as they are known.

So onto the twenty-fifth cutest being here (I have decided that the neighbours’ goats are cuter than AJ), Ava-Jane is still doing very nicely thank you very much. And actually it is quite good, in a way, that she is becoming progressively less cute – she is not far off becoming a teenager and, as we all know, teenagers aren’t cute.

She continues to be essentially seizure free, she has had the odd one when she is very tired. And being so much more alert has obvious benefits and her communication is improving a lot even though it continues to be quite idiosyncratic. It might not be obvious to everyone that her, apparently cute, little wave when she is watching her favourite dance programme on CBBC (not Ceebeebies, hurrah!), means, “Bugger off Dad, I am watching my favourite dance programme on CBBC. I will go to bed later.”

Things in the UK do seem to be inching towards some semblance of normality. We have been able to see my sister and family, our mates Tom, Soph and Izzy, to go for walks – isn’t it odd that for well over a year, “the walk” has become everyone’s social milieu, (well possibly just for tossers who say things like “social milieu”). I went to the pub with Andrew and having some pints at a pub for the first time in god knows how long was wonderful. I have had my second vaccination, for which I am immensely grateful.

Well, I had better leave it there. I have to take Anna out, these little cute things do tend to be quite incontinent, the twenty-fifth cutest one too, to be honest.

World Down’s Syndrome Day (+Otto’s birthday)

End of March is a time of great celebration amongst out progeny. The 21st is World Down’s Syndrome Day, which we can make a lot of noise about but today, the 23rd, is Otto’s birthday, but given that he has just turned 15, any sort of parental hoopla is just unbearably embarrassing. It’s quite a challenge to celebrate a birthday without actually doing any celebrating, especially as Fo and I would like to make something of a fanfare about it given that today is precisely a year since the first lockdown began, making Otto one of the first people to have celebrated two birthdays under these conditions. (Big hug Dolly if you are reading this, you too, I know!)

So as we weren’t allowed to do much either by Otto or by Boris Johnson, we just got him a load of pizzas, which we have been steadily munching for the past four hours (I am on the spicy ones now) and we are going to try to feed him his favourite stuff throughout the week. I think I can sneak a couple of pics of the lad into the blog even though he doesn’t really approve of me even taking pictures of him let alone posting them online, oh well, he’ll be able to sue me soon enough.

Taking out his mum’s horse before school while she is away in hospital with AJ.

I have seen my son basically turn into a man in the company of no one but his parents and his sister. I am still confident that he has his head firmly on his shoulders and his heart is completely in the right place. He has become very adept at navigating when he can allow himself to “go teenage” and when he needs to hold it together because we are going through a crisis of one sort or another. He was amazing when AJ was in hospital a couple of weeks ago, holding the fort while Fo and I went to and fro.

He is a very fine brother and Ava-Jane adores her O’o.

For World DS day, we did the odd socks thing, as you can see in pic below. 21st March is DS Day because Down’s Syndrome happens when someone has a third copy of the 21st chromosome, so 21-3. And odd socks because the 21st chromosome kind of looks like a pair of socks.

Ava-Jane’s odd socks were a bit more fun than mine which were just variations on grey.

I had some notes from bits of the blog that I was writing when AJ was in hospital, which was just a couple of weeks ago. I sound pretty fed up:

This is a bit bloody ridiculous really. Schools went back yesterday, Monday. This is great, it’ll only be two days a week for AJ but it will do her a power of good. She’s on such good form and socialising and learning and just getting out of the house is, like for all kids, just what she needs. She was at school for a grand total of about ten days in 2020.
Monday morning and she’s absolutely delighted to see Ava and Rembla, the two lovely Somali ladies who drive her to school. And when she gets back later that afternoon, she looks like she has had a grand day and knackered all at the same time.
But she has a nasty looking abscess infection on her gastric tube, photo to the GP, he ummms and ahhhhs a bit, but no off to hospital she must go.
I call in advance of Fo arriving so they are ready for her, the nurse who answers the phone, tells me, “Oh, yes, I know Ava-Jane.”

AJ is like a regular at the local pub – she has got a special dispensation that gets her straight through to the ward and you half expect the nurse at reception to ask, “The usual, madam?” and hand Ava-Jane her pewter tankard.

Hospital was pretty crap really – Covid restrictions makes a crap experience just that bit crapper. There can be quite a camaraderie in adversity between parents and with the medical staff but that has been all but eradicated. We were on a ward, and, to be honest, being on a ward is always pretty rubbish, one can take the camaraderie too far when sharing each grunt and groan with the strangers next door. But now the cells are divided up by sweaty plastic cocoons that don’t give a wheelchair turning space – and you still get the grunts and groans from the strangers next door but you can’t chat to them, so they can never become neighbours.

Ava-Jane was fine throughout her stay in hospital, they gave her IV antibiotics for a couple of days and we continued to dose when she got back and she flew through the whole experience. So we were quickly back to wanting her to get to school when we heard that the school had a policy that anyone who had been in hospital had to stay away from school for ten days. This would have taken us beyond the Easter holidays, so another whole term missed. Fo was amazing, amassing all sorts of evidence that this policy followed no official guidelines and Ava-Jane has been back at school for a few days and thriving on it.

Oh, look, I even had a bit of a political rant, I found this in my notes too. It was about the government giving nurses a 1% pay rise (i.e. – just in case not obvious: a pay cut in real terms after inflation):

They are such idiots. Setting aside morality or just common decency, which they certainly have, it’s politically very dim. They are going to have to backtrack in some form or another and are just made to look like a bunch of heartless shits. I was in hospital with my daughter this week and all the nurses were grumbling about this.

I heard someone on a podcast say that just when so many people are going through the NHS in one way or another, for testing, for vaccinations, or just catching up on any one of those many medical procedures that have been delayed, it is a very bad idea for them to be in contact with grumbling, unhappy nurses and other health professionals.

Sure enough, I got chatting with one of AJ’s nurses and she  told me about how unhappy they all were, how they felt like it was a “kick in the teeth”. 

What innocent times, back then – two weeks ago. That was in the innocent times when the government had only claimed that they couldn’t pay nurses any more because it’s “What we think is affordable” (Matt Hancock, Health Secretary). That was before this self-same government had decided that what was affordable was… more nukes! We are going to unilaterally reverse the general policy that the world needs to gradually decrease the number of nuclear weapons about the place that has been in place since Reagan, Thatcher and Gorbachev spun their magic. I mean call me a lapsed card-carrying CND member but I lapsed because I thought it was safe to lapse. But, honestly, who the hell needs more nukes these days?

Oh, and thinking about it, also in the interim between now and two weeks ago, apart from restarting the Cold War, the government has also rolled back centuries of hard won rights to protest. Under legislation currently being enacted, the Home Secretary can ban protests for being too noisy or too disruptive, which, given that protests are, by nature, noisy and disruptive, this essentially allows the Home Secretary to ban protests at will. Luckily any Conservative Home Secretary would be a throughly sensible and fair-minded sort of person without any authoritarian tendencies whatsoever. Oh… whoops…

I wrote the below one night, late after finding Ava-Jane awake way past her bedtime.

“Other people don’t have daughters like you,”

I said to Ava-Jane as I cuddled her in bed at nearly midnight. 

“Other people don’t have daughters like you Ava-Jane and what the bloody hell are you doing awake? 

Other people don’t have daughters like you Ava-Jane; they don’t have daughters who want to discuss how you have a nose and I have a nose and all the while it is nearly midnight. 

Other people don’t have daughters like you Ava-Jane who make their daddies stay awake until nearly midnight so that he can give you the next dose of meds at the proscribed time. 

But while we are waiting, I had might as well jump in for a cuddle so we can discuss how much we have in common in the nose department and how it must mean we are related somehow.

Other people do of course worry about their little darlings but they don’t have to worry about losing them quite as regularly as I do you. 

Other people might have whispered to their tiny cherubs, “don’t ever grow up,” but they hadn’t entirely thought it through.

Because other people don’t have you Ava-Jane. 

They don’t have you Ava-Jane; no one has your pure innocence, your pure joy, your pure you.