I had been thinking about writing, nay crafting, a blog post. First I was going to write one about the difficulties of being green while caring for someone with complex medical needs. Then, I thought, “No of far greater import is to share the advice on tactical voting in the upcoming European elections”. But this blog is supposed to be about the trials and tribulations of Ava-Jane and she has got yet another T&T. This time it’s the hips – they are severely misaligned.
Now, I like to put a positive spin on things so I wondered aloud whether, you know maybe, that was not such a bad thing. AJ is in a wheelchair and cannot stand, so arguably, her hips are not her most key joint. But Fo did then point out that we had been discussing with her various therapists, only this Tuesday, that if she is unable to do standing transfers, i.e. stand, swivel, and sit on the toilet, she is going to have to do everything in a hoist. I fight a futile mental fight against her becoming increasingly “disabled”, every bit of new equipment hammers home to me the point that she is not getting over any of this. I particularly dislike the hoists and seeing her transported like a chunk of meat in an abattoir (sorry that was a bit overly dramatic!).
I have always had a hang up about the equipment, as this post from 2012 shows, The Chair. It’s quite depressing to reread that post, it’s when I am just coming to terms with the fact that my daughter is going to be severely disabled but worse than that my writing style has not evolved at all in the intervening seven years. The horror!
In the main pic for this post, which I took this evening, you can see AJ in bed with her hip-straightening pink fluffy thing. We have been putting her to bed with this for a few months now. It is supposed to align her hips, which were getting a bit wonky, apparently it has not worked as the x-rays that she had today showed that her hips are, in fact, wonkier. We are not sure what the solution will be at this point but I imagine that it will be something more severe than the pink fluffy thing. This is a shame because strapping herself into the pink fluffy thing has become one of Ava-Jane’s self-administered medical procedures. She grabs the white straps, we both pull and slot it all into shape.
AJ doesn’t know how to do a bunch of things. We had an assessment this week and we went through the way that she will not make any attempt to read and that she might be able to count to five but she might decide to do it 1, 4, 3, 2, 5, because why not. But one thing that AJ knows more than most about is medical procedures. She always wants her own syringe so she can show you where to put your one. Now that she has a nasal feeding tube, she often needs to have her dressings changed and sometimes the tube itself too. Things things are nasty, painful procedures but any nurse that does it always remarks how little AJ grumbles. It’s as if she is like “Yeah, you reckon that having a tube shoved down my nose is the worst I have taken, do you?” She really is as hard as old boots, she is, that daughter of mine.
The trouble is that it is so hard to identify where her issues lie (“issues” yuck, I hate that word, what I mean is “problems”). OK, this is what we have: AJ is taking a bunch of meds for epilepsy, some of which have “mood altering” as a possible side effect, she has also just completed a course of steroids and steroids are definitely “mood altering”, she has seizures and she has misaligned hips, she is essentially non-verbal. So if she is looking out of sorts, is it the epilepsy meds, the steroids, the seizures, or discomfort from the misaligned hips, go figure? And remember, she is non-verbal, so she can’t tell you much beyond, I am really fucked off. And, as I mentioned above, she is not a grumbler so if she is telling you she if fucked off, it’s because something is properly up!
She spends most of her life seated in one chair or another, she is also totally wonky because she has no control of her right side, so it is hardly surprising that this has misaligned her bone structure over the years.
Q: What do you call a donkey with three legs?
A: A wonkey!
I am listening to the Shakira “Hips Don’t Lie” track, Otto heard it and popped down for a bit of father and son hip shaking. I did ask him if I could post this picture of the two of us about to set off on a cross country course… he vaguely assented. Neither of us is as fit as our steeds, so we decided to take a tactical retirement after 13 jumps of a 26 jump course… you wouldn’t want to overdo these things.
Oh, yes, I was going to say something about being green and having a family member with complex medical needs, well this:
One might takes one’s hemp sack to a small artisanal outlet that dispenses organic bulgar wheat from reclaimed Kilner jars (I don’t do any of that BTW), but one can’t be truly green or plastic free when one is receiving repeat deliveries of boxes of syringes, tubes and nutri drinks to keep one’s daughter alive. Though, as Otto points out, we did manage to reuse some of the nasal tubes to make a recreation of an early prototype of the atom bomb for one of his history projects.
Oh, and the Remainer thing… We have the European Elections coming up, much to the chagrin of many. Unfortunately this vote is about one thing and one thing only – Brexit. Darling of this blog, Nigel Farage, has reluctantly hauled himself out of retirement to found a fresh political party set to transform the world – the Brexit Party. It has no policies, no elected members, and obviously no vision for the future of this country beyond Brexit being Brexit. Its candidates are a terrifying freak show ranging from Anne Widdecombe, who was a relic twenty years ago, to the only person alive who could make Jacob Rees-Mogg look relevant to the 21st Century… his own sister. However, this charade is currently way ahead in the polls and set to send a farrago of MEPs to the European parliament and make our once proud country even more of a laughing stock than it is already.
It’s kind of a good thing but the trouble is that there is no single party labelled the Remain Party, in the way that Farage’s party is just simply called The Brexit Party. Change UK is the closest but the Greens, the Liberal Democrats, the Scottish Nationalists are also strongly in favour of remaining inside the EU. The trouble is that they also have other priorities, respectively – avoiding climate disaster, having a functioning economy, an independent Scotland.
So if you are a Remainer, who do you vote for? These European elections are only about one thing – Brexit, so how do you make your vote count? Check this article by Gina Miller, who has been one of the most effective campaigners to stop Brexit or to at least ensure that it went ahead along some sort of legal lines. And this is the link the the Remain United to work out how best to use your vote.
The irony of there being four English teams in the two finals of the European football competitions.
Oh and here is a pic of my wife looking really sexy on our way to an 80s party.