My last two posts have been titled “Neglect” and “Death” and the ones running up to those have been equally lugubrious, so I thought that maybe I needed to sound a chirpier note.
So the chirpiness of this post will run the full gamut of good humour from a visit to the neurologist via the travails of disabled access and probably encompassing the unbridled joy that is Brexit.
But ho and indeed hum, one shouldn’t linger too long on the positives. I have just had a day with Ava-Jane and it really is one of the most joyous occasions imaginable. OK, so we were hanging out because I had to take her to a neurology appointment but it did mean we got to hang out. FYI the upshot of the neurology appointment was that we seem to have hit on a med that has arrested her major epileptic fit and doesn’t make her floppy. This means that we can reduce the nasty med that didn’t do much and did make her floppy. She isn’t getting obviously cognitively worse even though she will never recover the use of her right hand and other functions..
With the aim of being chirpier, I’ll bung in some chirpy images. Here is a little gallery of AJ hanging out with some of my mates. There’s Clare giving us a guided tour of Christchurch College Oxford in her role as chaplain there. Pauline our lovely French carer is a massive Harry Potter fan and wanted to see the dining hall that is the model for the dining hall at Hogwarts. There’s AJ and Lorna both looking very chirpy indeed, Lorna is our uber-designer from work – by that I mean she is a supreme designer rather than she designs cars for paradigm shifting transport companies. And then there’s AJ looking lovingly at Fergus, who was paying usa fleeting visit from Oz.
Here’s a random one of Otto and Polly taking great care to clear a jump and Otto seeming to take great care to clear Polly too.
Ava-Jane getting pushed by Milly and Maddy at the village Coronation Sports Day is by now almost a tradition. Please observe Milly’s skilful technique to dislodge the hurdle just as AJ reaches it. AJ got a couple of first places that, admittedly, did involve some bending of the rules. Having the egg in her wheelchair seemed to count for the egg-and-spoon race and she sort of draped the sack over her knees for the sack race but you know, a win’s a win and we have got photos to prove it!
And some very chirpy rolling around on the grass with Nonny.
Minor rant about wheelchair access. First we had a hospital visit and you’d think that a hospital would have pretty good wheelchair access but not first the first time, it felt like an obstacle course with the added frisson of a very sleep slope and heavy traffic.
Then we paid a visit to my office. We are having major building works at work, which is a bit of a pain for everyone but getting AJ in was interesting. It obviously isn’t a problem, she won’t be starting her career in the educational publishing business anytime soon, so she doesn’t need to come to the office too frequently. But in our block there’s a disability assessment company, that is tasked by the government to check that people claiming disability benefits are actually disabled. There have been some horrendous horror stories about this system with people forced back to work and then dying shortly afterwards. Though it did make me think that if anyone managed to actually get into the office, it might be taken as an indication that they are not very disabled after all.
Brexit, I promised some Brexit but really I don’t think I can summon the effort. One day when I am feeling more full of beans I am going to trawl through my old blog posts to show that I predicted exactly this. This abominable, all-encompassing trudge through endless nit-picking and hair-splitting to accomplish so very little. I knew that whatever the benefits of leaving the EU are, and there might be some… I suppose, they would be far, far outweighed by the disadvantages of the process to get us there. So we will take the Teresa May approach and leave actually doing anything on Brexit for another day.
The sun is out, AJ is hilarious and can still make me laugh more than anyone I know, Otto is a dude and my wife is cool. The loss of my mother is something that, I hope, will stay with me forever but it has meant that those who remain have been brought closer together. My cousins Henry and Patrick have been amazing in helping us sort out both Mum’s affairs and Mum’s most incredibly untidy home and garden. My sister Mary has been able to spend time here and is so on top of things she even writes emails made up of nothing other than bullet points. Frightening! We have had Rachel, Lucy and Charlotte visiting and helping with the tidy up. Brother Toby is flying back from Oz next week. So life is good. Chirpy, chirpy, cheep, cheep in the immortal words of that great piece of music.