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.
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…
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.
Misliterature 