I wrote the blog post below, hoping to get round to refining it and giving my old friend a deserving send off. But I have had a mad couple of weeks, taking in a dip in the sea in Brighton with Tom and Sophie, some days in Seville, via an emergency landing in Bordeaux, and days of long meetings back in the office. And it’s all rounded off with a visit to Stoke Mandeville, making the first paragraph of the section below somewhat near the knuckle.
Where we are today
She had a seizure, aspirated some muck into her lungs and got a severe chest inspection. This is becoming quite common and this time her oxygen levels dropped below 60%, so there was some panic in the air. They were going to take her to Oxford but Fo calmed the whole thing down a bit and she’s in a high dependency room, though to be honest by the time I got here, her oxygen levels are right up and she seems quite perky. She turns 16 next week, so this might be our last time in the Children’s Ward and I fear things won’t be quite so cute and cuddly once we are in Adult, gulp!
This is where I traditionally blog from, so here comes another one from Ava-Jane’s hospital bedside.
Two weeks ago
I am sure some people have memory suggestions from Apple Photos for “Ibiza over the years” or “Gstaad over the years”. There must be some algorithm that identifies places you regularly go and someone thought it would be fun to bundle them together and hand you a retrospective, whether you wanted one or not. We get “Stoke Mandeville Hospital over the years.”
But one mustn’t grumble – we have been hit by some shockers over the last few weeks and for once it isn’t our direct family who are being derailed by disaster. Apart from some family derailment, we have had to say goodbye to two truly important, dear people. I would like to salute them both and of course I could never be able to do them justice.
I really barely knew Archie, but he was an important presence in our lives. He was the son of a heroic couple, Will and Kiri. We were first introduced to them to play misery top trumps by our in-laws. The idea was to see who was in more miserable straits, them with two sons with severe, but entirely unrelated, disabilities vs our single daughter with multiple, severe disabilities. It was a bit of a toss up and ultimately unresolved as a competition but there really couldn’t be a less miserable couple than Kiri and Will. It was important for us to meet a couple who could comprehend what we were going through and who had fought the good fight ahead of us. Kiri has been a powerful support for Fo, who is in charge of navigating the labyrinthine web of social services, healthcare, support and the rest of it.
I didn’t know Archie well but he was, like Ava-Jane, one of those people who could, though functionally non-verbal, light up a gathering and show that communication is about so much more than words. His funeral was an incredibly moving affair and I take my hat off to Will for giving a eulogy that did Archie proud.
The other loss is of our dear old buddy, Ali.
I have been a friend of Ali’s for over fifty years years – half a century. Well that’s not quite true, we have known each other for that time; it probably took us about five years to actually become friends.
I first met Ali when we were about five or six years old. Our big brothers and our parents had become friends so the Barkers came to visit us in Brussels. And all of a sudden I was supposed to also become friends with these two twin sisters – it seemed entirely unreasonable at the time. I mean, they were girls… and seemed to be utterly uninterested in my Action Man dioramas.
But over the years Fi and Ali became two of the best friends I have ever had. And they were always Fi and Ali or Ali and Fi, the Barker twins.
In the cold light of day, admitting that your closest friends are friends from the Pony Club, might not sound so cool but we have a very close-knit gang who have stayed friends for many, many years. And Ali has always been a keystone of that friendship.
Ali has become a very great friend of Fo’s. In fact it was Ali, when we re-met Fo at a party, having vaguely known her many years before, who nudged me into getting in touch with and asking her out. And look where that led! So, we are going to both miss her massively.
I made some notes of a couple of amusing Ali memories
- We all went on holiday to the Greek Island of Paxos. My parents wanted us to imbibe the culture of Greece, so we had to have curdled yoghurt and nuts for breakfast but the Barker’s brought carrier bags full of British food so we had to suffer munching on our granola while we could smell the sweet, sweet smell of a Valerie Barker fry-up wafting over from the next-door flat. We went dinghy sailing and at one point I was, probably unwisely, in charge. I was sailing in one direction and had two Barker twins on board, I jibed, looked round and noticed that I was missing a Barker twin.
- Fi and Ali came to visit me in Spain, so naturally I threw a party in their honour. The trouble was that we started partying quite early for Spanish time and the twins got stuck in from about eight o’clock but nothing really happens in Spain until after 11. So by the time my friends turned up, the twins had crashed out. At one point in the evening, one of my friends asked me, where British friends who we are supposed to be welcoming were. I pointed him to behind the sofa where Fi and Ali were curled up, on the floor, fast asleep.
- Go well Ali, I hate it that I have to do a eulogy for you and so wished that we would have had many more years of giggling ahead of us.
Ava-Jane news
(Ed: this is now old Ava-Jane news) is that she has had another EEG test, this time to see if she would benefit from a VNS. I have to admit that I haven’t done my research about the VNS, so I went to ask Fo about what it is, you know, darling, for the blog. But she is watching Clarkson’s Farm, and told me to Google it, so this is what Google says:
A vagus nerve stimulator (VNS) is a medical device used to treat various conditions, primarily epilepsy and depression, by delivering electrical impulses to the vagus nerve, according to the Epilepsy Society and Cleveland Clinic. It’s often described as a “pacemaker for the brain” because it sends signals to the brain to help regulate activity, reducing seizures or improving mood.
But they needed to get a better idea of what AJ’s seizures are like so she had a three-day EEG to monitor the seizures and… just like every other time she has had one of these three-day EEGs, she didn’t have a proper seizure for exactly those three days. She had loads of seizures the week before of course, but just not during those precise three days, aaargh and grrrr. The first time she had one of these three-day EEGs, she’d been having about ten seizures a day, and then suddenly had none during the whole span of the monitoring. I think there might be some theory about how observing an experiment affects the experiment and it might be related to Schrödinger’s Cat or it might not, who knows?
But anyway due to various logistical quirks I was the one who was going to have to give AJ the bath to wash out all the electrodes glued to her scalp. To be honest, I haven’t been giving Ava-Jane a bath recently, as her wonderful carers and respite carers generally do that.
So though I haven’t given her a bath for a while, Ava-Jane apparently still thinks it is essentially giving her an enhanced interrogation waterboarding sessions. But we got there in the end, thankfully in the time since Ava-Jane had her first EEG and this time, the boffins have developed a water soluble paste to stick the electrodes down that washes out far more readily than the glue she has previously had that gave her empitigo (god only knows how you spell that).
We’re watching Andor; it’s Star Wars for grown-ups and gives the background to the rebellion against the Empire that we saw take down the Death Star in the very first set of films. We’re also watching Say Nothing, a lightly fictionalised account of the IRA during The Troubles in the 70s and 80s, based on a non-fiction book of the same name. They are both very good, Andor is essentially Say Nothing in Space.
And obviously the irony of watching these programmes as events unfold in cities across the US, where we are seeing democracy turn into a fascist adjacent Empire (I didn’t call them fascists for the record – some people get very exercises about whether we should or shouldn’t call them fascists).
Misliterature 