Neglect

I love these pictures from a “doing the chores with AJ” day. These were from before she had her horrendous haircut.

 

I got home this evening and had a little rant about work to Fo and then she asked me if I wanted to know how their day had been. Fo had just got back from AJ’s Parent’s Evening, which I couldn’t make because of work. AJ’s Parent’s Evenings tend to be quite well populated with various therapists, teachers and social workers. The social worker, who knows AJ well, was worried that she didn’t look in great shape and had concerns that she was was being neglected. Bam, that’s quite a blow to the solar plexus… Neglected… Ava-Jane… by us?!

To be fair to our social worker, AJ does look in quite a state. She has had a horrible pudding bowl haircut, she’s got scabs behind her ears and a crust of impetigo and glue on the top of her head, she’s got bruises on her legs and red eyes.

But other than the bruises on her legs, which we can’t explain, the rest of it is all because of the stuff that we have been worrying about for ages. We thought we should get her a short haircut before she had a bunch of electrodes stuck to her head so they wouldn’t be so painful to remove. She’s got horrible impetigo, the treatment we have been given is a hydrocortisone cream, which does the trick but the moment you stop applying it, the impetigo comes back. But you can’t just keep applying hydrocortisone because it is filthy stuff. This also explains her red eyes – she itches her head that’s got the cream on it and then rubs her eyes. You really shouldn’t rub your eyes with hydrocortisone so we stop applying it and the impetigo comes back. Aaargh.

I have always tried to not criticise all the wonderful people who make up the institutions that have cared for AJ through all her various ailments and I am not going to start now. The NHS is a unique institution that has failings like all enormous institutions and it fails more often when it is under-resourced. And it is chronically under-resourced. May’s “hostile environment” to immigrants means that droves of Indian doctors have been denied entry into fortress UK and what with European nurses deciding that anywhere else would be preferable to setting up in a land that… Oops rant!

As I was saying, I am not going to criticise the people who care for AJ on a day-to-day basis but (but!) the machinery that we have to deal with means that AJ hasn’t been able to see her Paedriatician after six phone calls from Fo, we haven’t heard anything about the EEG that she had two months ago and we have been completely forgotten by the plastic surgeon who was supposed to be fixing AJ’s rib cage.

Fo went to a disability trade show the other day and came back despondent about not being a good parent because we hadn’t tried all of the massive gamut of kit that was on offer. “On offer”… at massively inflated prices, I might add. The “special needs equipment” economy is a strange one. We have got a lot of stuff for AJ. For example, she has got two wheelchairs (everyday and cross-country), a toilet chair, a bath chair, a round-the-house chair, a massive walker and an electric wheelchair. Of all of these, we only paid fully for the cross-country wheelchair. So the manufacturers of “special needs equipment” are selling to a massively subsidised market where the end-user isn’t actually paying for the stuff.

But on the other hand, the manufacturers are selling to small niche markets, where two people’s special needs will never be the same. For instance AJ needs a splint on each leg but they each need to fulfil completely opposing functions – one needs to keep her right leg rigid and other is supposed to make her left leg flexible. There really won’t be many AJ’s – so they need to make a bespoke set of splints for a market of one.

Sorry that was another rant and not really relevant, what I wanted to say about Fo’s visit to the trade show was that it is quite easy to think that you haven’t done it all for your kid who has all sorts of problems. It is probably the same with any kid but I do think it is accentuated by a child who has all the various problems that AJ has.

The truth is that AJ is never going to be well and she will probably not live an awfully long time. So I think that our responsibility, as parents and for everybody that knows AJ, is to make sure she is as happy as she can be. And that’s something that I do know – she is the happiest person that I have ever met. She might look like crap but she can make me laugh like no one else. After my post-work “woe is me” rant, I climbed into bed with AJ to read her a story. She got in a strop about something – it took me a while to realise that she wanted me to get tucked in properly under the duvet. Then my old pal Ali called and AJ wrenched the phone from my hands because she wanted to have a chat and a giggle with with Ali on the phone.

When we did eventually settle down, we read The Little Elephant’s Walk by Adrienne Kennedy – I have no idea which jumble sale we got it from. After a quick search, the internet seems to know very little about this book but it’s gorgeous and had plenty of animals that AJ knew the name of. You do kind of need to know what AJ is talking about to pick up what she is talking about. She communicates in a combination of one-handed signing, noises and unfinished finished words. So for a monkey she scratches her arm pit, an elephant is a “le-fa” and all birds are tweet-tweets – even an ostrich I found out tonight.

A little session like that with AJ is without doubt the ultimate way to unwind – it puts things into perspective like nothing else. She’ll take a look at you and giggle like a loon and then ask for a “hug Dada” and that’ll do.

AJ is NOT neglected – she’s just got so many problems we can’t keep up. So in the meantime the only answer is extreme silliness; see below.

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Death

Apologies for the lugubrious title to this blog post but it’s kinda what it’s going to be about. I could have tried something maudlin, such as “Intimations of Mortality”, or gone for a literary angle like “Shuffling off this mortal coil” or even attempted to inject some forced jollity along the lines of “Popping ones clogs”. However, there seems to be much death around and I had might as well say it as it is.

Until only a few years ago, I hadn’t really had much to do with death. My father died when he was just sixty and I was twenty one and that was the death that defined my life. His was the only dead body that I had seen until I saw Mum. I have, of course, lost grandparents and uncles but at the time it had felt like it was their time to go. The thing is though, as it gets closer, I believe it never actually feels like it is your time. Mum certainly didn’t feel it was her time. Maggie, the last friend to see her alive, said that she didn’t think Mum thought she was going to die. Mum wouldn’t have considered it her time until she had gone past her own mother’s ninety seven years – she fell eleven short.

But recently there really has been a lot of death about for me. I have lost two dear friends, Toby and Donald, and my cousin Angus, all about the same age as me, so tragically young from my point of view. Then obviously Mum will leave the biggest hole imaginable.

Today was another grim death day. We decided that we had to put down the beautiful Corrie (horse… FYI) today. Mum had bred her from her talented mare Dragsie but other than beauty, poor Corrie really didn’t have very much going for her. She was chronically allergic to grass – which is unfortunate if you are a horse and suffered massively from spring to autumn even when wearing her burka to protect from flies. She then developed ME – yuppie flu… in a horse!! – which made her listless with no enjoyment of life. Then finally she got a syndrome that degenerates a bone in the hoof (navicular for the equine types out there). We tried everything but even just walking on grass was obviously massively painful. So we did that thing that we can with animals. Luckily a few months ago Mum had agreed that she should be put down but Fo couldn’t and turned round on the way to the vets, so we didn’t have the feeling that we were doing this behind Mum’s back as it were but it was a very hard decision to take. Vic, who had ridden Dragise and trained Corrie, came over to say goodbye, cry a bit and support Fo. Even though it is “for the best”, it feels like we are losing one of the family. AJ calls all horses Corrie because they have grown up together.

The “man” came over this morning just as I was driving away. Corrie was by the hedge where her mum had been put down next to Mum’s daffodils. And I was driving away to my Mum’s cousin, Topher’s funeral.

 

Topher was not a young man but he was the youngest of Mum’s generation of cousins. He had been suffering from increasingly severe Parkinson’s for years but was still full of life. “Before his time”? I’d say so, but then I’m fifty next year. He was a Concorde pilot and that was always pretty cool, he was also a sparkly, kind person that the world will miss.

We gathered for Topher’s funeral at the old family pile, where my mother and Topher spent their Christmases. The house has passed through a number of owners since the last Orlebar, another cousin of my mother’s, had to sell up. The current Indian owner kindly let us take tea after the funeral to say farewell to Topher in the house that had meant so much to him. I saw cousins who I rarely see but who I had sadly just seen at Mum’s thanksgiving.

And now that I have been to a number of these sendings off – funerals, thanksgivings, memorials – I am beginning to understand their role as a key ritual in our lives. They are a recognition of death, the one constant in our lives. We bid farewell to the departed and gather round them to remember them, by being there, still alive, able to carry them with us, in our memories. It is good to recognise death, however horrible it is, we won’t escape it so we might as well face up to it.

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So that was my death for today.

Death is also in the air on a more global scale. The slaughterhouse that is Syria will stain us for a generation. I certainly do not have any answers to what should, could or should have been done a number of years ago. But the bombings this past weekend seemed a particularly pointless affair. Bombing to stop bombing feels like a particularly vicious circle of twisted logic. For Teresa May to have signed up for this without a parliamentary debate to the click of Donald Trump’s teeny fingers seems especially unwise. Laying aside that he is categorically the worst President in history, there seemed to be a whole lot of angles that needed to be looked at before getting involved. Though the bombing that did actually take place seems to have had the sole objective of the west being able to say “We did something,” without having done anything at all. Thankfully really, if we had actually done anything meaningful all hell could have been set loose (*whispers* “and it still can…”)

I think I have been a few blog posts without banging the Brexit drum so I had better insert a convoluted connection at this point. Wasn’t Brexit meant to be all about sovereignty? Haven’t we just committed an act of war on the say-so of the President of a foreign power? Whatever modicum of sovereignty we will have regained from Brexit – we are still haemorrhaging it through the transnational corporations that refuse to pay taxes on the money they make in this country, through being marched to war on the orders of a foreign state without the consultation of parliament, through existing and future trade deals that put the interests of companies above the interests of citizens. If we can’t levy taxes, wage war and protect our citizens, will we really be this sovereign nation that everyone gets so excited about?

A note on the pics. I thought that Corrie had been put down by the hedge, so I added some pics from me and Vic of her there and one with a nostalgic sort of filter to it to make the hedge look like it it’s from one of our old family photos. Then Fo told me she was actually put down by the lake, so I took the picture of the weeping willow, which felt apt. The willow will also soon be joining Corrrie and Mum and Dad, who planted it, as it has wept too much and is falling into the lake. The big house is Hinwick House and then there’s Hinwick House being photobombed by Georgie, James, Mary and me – some of the less illustrious scions of the family!!

Lambs 2018

We have got try to summon up a semblance of normality, so how about yet another lambs post? Or another EEG post? I think we will be having another EEG before we have any more lambs.

So as you can see in what WordPress terms the “featured image” of this post (the picture at the top) or the one below of AJ getting breakfasted by super top cousin Molly, AJ got to wear a head-dress and electrodes for three days. She has had this before to try to get to the bottom of what is going on in her head when she has her spasms. She has the electrodes stuck to her head and whenever she has a spasm we have to blip a button. We also have to keep a rigorous written record with a description of the spasm and any other details that might be relevant. So when the boffins read the output from the electrodes they will be able to identify when she had the spasm, thanks to our blipping and rigorous record-keeping, and see what was going on in her head at the time.

Or at least that’s the theory… It didn’t quite work out that way in the end. Because even though AJ has been having quite frequent and quite heavy spasms for a while now, she didn’t have a single big one during the three days that she was plugged in. No idea why. Though predictable unpredictability is what AJ is all about. We have had the lovely Icelandic Hannah with us and she has been doing Reiki on AJ. I am a total sceptic but happy to give anything a go that doesn’t seem harmful and Hannah has something of the shaman about her. So maybe it was the Reiki that kept the spasms away – she had a massive one today and Hannah left on Tuesday.  Hmmmm… Anyway the chances are that we will have to repeat the process some time soon.

AJ did have a pretty funky hairstyle for her grandmother’s funeral – the glue takes a while to get out…AJ-Molly_EEG

Lambing this year has been considerably less stressful and time-consuming than it has been in other years, thanks entirely to the lambs not getting born here! Fo’s dad John brilliantly assessed the situation here and realised that what with everything else going on, we could do without having to be running around the fields trying to keep the little buggers alive. I say “we”… it’s mostly Fo!

So we (Fo again) delivered the pregnant ewes to John’s and went back last weekend to check in. We found a field full of happy lambs as the photos below can attest. The whole flock had originally been John’s and his father’s before that so he’s a lot more competent at looking after them than we are. Three of the ewes had been orphans that we had hand reared a couple of years ago and Otto’s favourite, Skye, was a mummy – her lambs got a lot of cuddles. I love the fact that generations of this family of sheep have accompanied generations of Otto and Ava-Jane’s family – there’s something quite wholesome about that.

I am not going to write about Mum today. I will share more about her funeral another day.

 

 

 

Mum’s Thanksgiving

Mum was always a big fan of this blog. She was always encouraging people to read it. Some of her age group with technophobic tendencies claimed they had no idea how to access a blog, but she’d tell them “What rubbish! You can read, can’t you?”

So it feels appropriate to use my blog to spread the news about her Thanksgiving Service as suggested by our dear Lucy C. We have an ad coming out in tomorrow’s (Saturday) editions of the Times and the Telegraph as per tradition. I had to do some rather fierce editing to keep costs down as these publications charge by the word or line but readers of the blog can get the full text I had wanted to use:

Baxter. –Faith (née Graham), died in hospital Saturday March 3rd, aged 86. Beloved mother and mother-in-law of Toby & Laura, Luke & Fo, and Mary & Matt and grandmother of Josh, Zac, Molly, Otto, Ava-Jane, Guinevere, and Leonora. She will be much missed by all of us. Memorial to be held in St Mary’s Church, Mursley Friday 16th March at 11 a.m. followed by a reception at Mursley Village Hall.

It is quite hard to plan for these kinds of things. Everyone is very welcome and we expect that quite a few may turn up. Hopefully we can enlist some help and get people to supply the odd bottle of something and a quiche or similar.

In Ava-Jane news – after all this is AJ’s blog and I know that Mum would not have wanted to upstage the Squidge – she has got three days of EEG coming up next week. This means sticking electrodes to her head and bleeping a button every time she has a spasm so that the medics can read across to see what happens in her brain when she is having these spasms. AJ also has impetigo with crusty sores on her head, we are a bit worried about positioning the electrodes so we have cut her hair short. We have got a lovely girl from Iceland staying at the moment who is into herbal remedies – I came back the other day and AJ’s face was crusty all over and I though her impetigo had spread alarmingly but it turned out to be a banana face mask.

I have put a photo as the main image for the blog of Mum when she must have been about four and here is one below of her raising a glass to all her friends and family. Cheers Mum, we’ll raise one or two glasses to you next Friday.

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Mum – that was a proper life

It is with a very, very heavy heart that I have to tell the readers of this blog that my dear old Mum died late last night. I know that some of you will have known her very well and others not at all but those that did know her will all remember her as the incredible woman that she was.

To me, she was my Mum and my role model. Our father died when I was just twenty so Mum had an enormous part in making me who I am. A not for my younger readers: you never stop growing up, so you should never stop listening to your parents because the day will come as it has for me today that you can’t. I remember railing at Mum when she was dishing out some bon mots, “When are you going to stop giving me advice, I am 21!”. My uncle, who lived with his mother for most of his adult life and was in the room at the time, whispered in my ear, “And I’m 66.” It was only quite recently that it dawned on me what an infkuence she was when I realised I had followed in her professional footsteps having, like her, worked as a teacher and in educational publishing. I am not yet a published author, as she was, but you never know.

Mum, was “Mum” to be me, Mary and Toby, she was “Pipsie” to her seven grandchildren, “Mrs B” to so many who were close to and fond of her but couldn’t quite dare to call her “Faith” and of course, she was “Faith”.

Mum was a very big person – not in height (I inherited my lankiness from her) but in generosity, charisma and the size of her heart. She looked after all of her family very much but also an enormous group of people. Otto and I were talking about her and we decided she had had a proper life.

This proper life was certainly an eventful life. She got married at 34, which was quite late for someone of her generation, and she packed in her time as a single woman. She wanted to travel in her very early twenties and saw a job ad for an au pair. She had always wanted to visit Latin America so she applied and got the job. She looked up Nigeria in the Atlas she realised that it wasn’t Nicaragua – obviously Geography was less important than Home Economics at the kind of all-girls school she attended in the 1940s. But not to worry, off to Africa she went. Africa became an important part of her life. She ended up being the Lady-in-Waiting to the wife of the last Governor of Nigeria and was present at the ceremony of independence. I was always slightly squirmed when she would come across a black person, like recently an Amazon delivery man,  and ask them “And where are you from?”, I always feared they’d answer “Birmingham”. But she made a load of random friendships, including the Amazon guy, when these people turned out to be Yoruban Nigerian and she’d tell them stories of having been a great pal of the Chief of the Yorubas.

Mum had a story for any occasion, they often had an underlying moral to them that if you knew them well enough, you knew where they were going. One of these was another one from her African experience. The mother of the family she worked for contracted polio and didn’t get medical care as quickly as she might have done and her health suffered as a consequence. So if a kid was ill, Mum would tell this story as a dire warning of what might befall them if they didn’t get checked up swiftly. She once tried to get us to get a cough that Otto had checked as potential whooping cough – this was just when AJ was at her illest, so whooping cough wasn’t really what we needed to be worrying about at the time.

When she got back from Africa, she worked for Pitmans, the publishing company. I think she started as a secretary, she was certainly proud of her Pitman’s shorthand, but she worked her way up to quite a senior position and then started writing the books herself. Mum was an early feminist and very proud of the fact that at one stage she earned more than her three brothers combined. She was very involved in a revolutionary alphabet, ITA, that was designed to eliminate the vagaries of the English spelling system and allow children to learn to read more quickly. Like so many radical educational ideas it proved controversial and didn’t really take off but Mum wrote a lot of her books using this alphabet.

This is around the time that she met my Dad. She liked to joke that theirs was an “arranged marriage” – two mutual friends introduced them because they thought they would be good for each other. Mum always said that had she met Dad ten or fifteen years earlier she probably wouldn’t have looked twice at him. He was an intellectual, lefty, Scot who worked for the Civil Service civil when she had been dating the landed gentry and Tory MPs. On one of their first dates when she was thinking that he was a bit stodgy and dull and he was telling her rather boring story about how the St Johns, Cambridge, classics scholar had to write a Greek sonnet for some aristocrat. “Oh, really,” she asked politely, feigning interest, “and did you know the St Johns, Cambridge, classics scholar?”.

“I was the St Johns, Cambridge, classics scholar,” he replied. She was impressed. As she was by then a little bit older and had been through a bit more, she began to appreciate over the four years of their “whirlwind courtship”, as she liked to call it, that this quiet, brainy man, so unlike her (many!!) previous boyfriends was the one for her.  Theirs was a truly loving marriage, Dad was the calm centre to her storm, as she rushed madly around, doing a hundred things at once. I can never remember seeing them argue. They took us all off to Brussels for eight years, when Dad worked for the EEC, the precursor to the EU. I won’t rant, but Mum was devastated on the morning of the Referendum as she saw what really had been a dream of European co-operation, something that had meant so much to my father, crumble.

They stayed in Brussels for longer than they had planned but the suburban life of the diplomatic housewife was never really for Mum and so we moved back to our home, the higgledy piggledy farmhouse they had bought and renovated but only lived in for four years or so before they had to rent it out. This is Spring Grove Farm, the house in the main picture of this post, with Mum’s beloved snowdrops doing their thing in this photo I took earlier today. Because this is where we live now, in one of Mum’s barns – we are not just losing a mother, we are losing the best neighbour you could ever wish for – one you could not just ask for a cup of sugar but a whole case of wine if you were going to have some people round. And she also kept us well supplied in horses.

You can’t really talk about Mum without talking about horses.  Fo is going to write some stuff about Mum and her horse addiction in the appropriate spaces – Pony Club newsletters and so on. Mum did do some very cool horse-related things such as playing international Polo for Nigeria against Ghana. But for Mum the horse thing went a bit further – she somehow saw that hanging around with horses was a great trascendental experience that brought people of all walks of life together.

I have just spoken to Toni, a single mum who Mum took under her wings when she came across her little boy riding a scruffy pony. Mum got out of her car and asked him, “Can you run?”

“Yes,” he replied.

“Can you swim?”

“err, yes.”

“Can you shoot?”

“errr, no I can’t shoot.”

“Well you need to learn. You need to do the Tetrathlon (running, riding, shooting, swimming). Get your mum to call me.”

Michael went back to Toni, his mum and told her “Some posh lady told me she is going to teach me to shoot. This is her phone number, you’ve got to give her a ring.” Toni thought this was a little odd but called the number. Mum told her that Michael had to join the Pony Club. Toni tried to explain that she lived on a council estate and didn’t know anyone in the Pony Club and didn’t think it was really for them. Mum, not for the last time, gave Toni a stern talking to, “Nonsense girl, Pony Club is for everyone.” Toni and Michael have been very close to Mum ever since. He is a big, gruff, thirty something now and like so many people, I imagine, he cried and cried when he heard she had gone.

There’s a whole swathe of Michaels – people Mum became a mentor to. After Dad died and we all flew the coop, Mum took on a role of caring for anyone who came into her orbit. All my mates love her dearly. Whenever friends of mine came to stay and even though I wanted them to hang out with me, they’d all go and spend some time catching up with Mum and she felt completely cool about inviting herself to stay with Amber and Rob in Wales or Tom and Sophie in Brighton.

She also became the Whaddon Chase Pony Club Tetrathlon coach. To the uninitiated, this might not sound like much but for the kids she trained, it was life-changing experience and they are all devoted to her. She has been on countless hen nights of people fifty years younger than her, got invited to all their weddings and had a very special group of them come to visit her just a few weeks ago when word got out that Mrs B really wasn’t well. She is going to leave a massive gap in so many lives – I have already had a load of messages that break my heart, like Victoria saying: I don’t think any of our lives are long enough for her to have been able to tell all the incredible stories she had .. I could never of got bored and never heard the same story more than once.. she was the most knowledgeable funny woman I have ever known my only regret is that she is not here anymore to tell me more stories…

But as well as being this bulwark in the lives of such a wide and varied cast of characters – I did like the fact that just before I spoke to Toni this evening, I had been speaking to the Countess of Mexborough – Mum’s cousin who was also devastated by the loss of her lifelong buddy (and I still have to call Boris Johnson’s parents!!) – Mum was above all a massive family person.

Mary and Toby will have stories to tell of Mum as a parent, her generosity, love… and advice, lots and lots of advice… I have some great memories of Mum as a mother. She used to come out to Spain, when I was living there and we would go off on jaunts together, sharing a room in Parador Hotels, in places of historical interest, getting pissed on the local tipple and having a riot. But it was when my family was in crisis, as it has often been, that Mum’s true qualities came to the fore. When Fo was very unwell, after Otto was born, and not really able to look after him, Mum came to stay, slept in his room, changed him and gave him his bottle during the night. She made sure that Fo spent as much time with him as possible to make sure that they bonded when that might not have been the case with the puerperal psychosis Fo was suffering from. It worked, Fo and Otto have the most incredible relationship but it also meant that Mum and Otto had a beautiful connection. He will miss her sorely.

And again when AJ was in hospital for months on end for chemo treatment, Mum, by then into her eighties, would come and relieve us, sleeping on the bench by the side of AJ’s bed. Of course, by this time we were living next door to her so our lives became so entwined. I’d sometimes grumble about this but it has been truly magical to have Pipsie across the way and my kids growing up where I grew up. She has been such a healthy influence in our children’s lives – she was Otto’s greatest advocate and stood up for him whenever we were telling him off. He is determined to say some words at her funeral and wants to bake some memorial flapjacks from the recipe she taught him. Everyone loves Ava-Jane but Pipsie REALLY loved Ava-Jane, they could spend hours together putting a baby (doll) to bed and cuddling the baby and putting the baby back to bed again.

Mum liked to have good holidays and she took us all off for one last blast in Sri Lanka at Christmas 2016. She’d noticed that when her friends died, all their family from far and wide would get together for a Memorial Service and she thought that this was a bit rubbish as the person in question was not actually there to appreciate this gathering of the clans in their honour. She thought she’d cheat death a little by preempting this Memorial Service and get us all together while she was still alive. So Toby, Laura, Josh, Zac, Molly from Australia, Luke, Fo, Otto, Ava-Jane, Mary, Matt, Guin, Nora, and of course, Mum from the UK, rendezvoused on a tropical island to spend some quality family time together and it was great. We even managed to do it again this Christmas for Zac and the newest member of the family, Kimmy’s engagement party. I can’t think of anything better than that, just a couple of months before she passed away, Mum was able to spend some time with all of her children and grandchildren

So cheers to you my Mum, farewell, I will miss you so very much and so will so many people – we’re worried that the church and the village hall won’t be big enough to fit everyone in. You were the tops and the greatest respect I can pay you is that I married a girl just like you and I love her for it and she loves you too – you had such a special relationship. But there is just one small point of criticism that I would like to raise at this stage in proceedings: We have to tidy your fucking house!!!!

 

Sometimes you just couldn’t make it up

This blog is called misliterature – the original idea being that it was misery literature – a genre that seemed to be in vogue when I started bashing away. It’s the Fault in our Stars genre of tragic stories told in a stoic way – teeth gritted against adversity. I hope I haven’t wallowed in self-pity too much over the years but I might tonight.

Post-Xmas has been quite tough as my mother hasn’t been very well. She lives next to us, so we are close geographically but also emotionally – she is my mum – obvs! But she has also been a massive support for us over the years, when Fo was ill after Otto was born, when Otto had eczema, through all of AJ’s various predicaments and just supplying us with quantities of wine and horses at crucial moments. She has been quite bed-bound and not eating very much at all, so we (well mainly Fo) have spent a lot of time checking up on her and trying to make sure she gets enough to eat. Mary and Fo have also been working hard to sort out the right caring arrangements for mum to make sure she is in the best hands possible. We have got to make sure that mum is well looked after. She reads this blog and I am sure that she wouldn’t mind me saying that people should give her a quick call or pop in for a visit if local.

But then obviously we also have a bit of AJ worries – well of course we have. I noticed that she was getting a funny yellow bruise building up on her chest. We had it checked out and it turns out that the metal stitching she had from one of her heart operations is rubbing. Most people don’t either have chest strapping when they are in their chair or spend their time rolling and spinning round on their chests when they are not. AJ does – she’s either in her chair or on the floor. So normally if you have had to have your sternum cut open, it is a good idea to have the stitching on the outside – turns out that this was not the best idea for AJ’s specific set of circumstances. So she had an appointment with a plastic surgeon. She just needs “a little operation” to sort it all out. “Little” it might be, but it means another round of general anaesthetics, being chopped open again and generally being messed about. Oh well, you can hardly say we are not used to it!

But all of the above is just the build up, sketching some background to the “you couldn’t make it up” headline.

I was on my way to work on the bus yesterday and got a text from Fo saying, “Call me now” with a clear sub-text that “and this is important”, so I had all sorts of worst case scenarios running through my head, mainly Mum being rushed to hospital. But no, all of sudden Fo was telling me that AJ’s taxi had been in a crash – so for all of you. as Fo quickly told me: she’s fine, she’s fine, she’s fine – everyone’s fine. Or not as it turned out.

Although we had been told that everyone was fine, Fo decided to take AJ to Accidents and Emergencies to get her checked out and who should be sitting next to them in the Waiting Room? The carer who was with her in the taxi and with a broken leg. Fo also noticed that the strapping in AJ’s wheelchair was all but torn through, which must have meant that it was quite an impact.

Otto and I were wondering quite how you would check AJ for concussion. If you ask how old she is, she will invariably tell you “five”, we think because she can the  neatly hold up the fingers of one hand. If they had asked her where she lives, she’d have probably said “doll’s house”. If you ask her to tell you the number of something, she will tell you a number, but just not the number of things you are asking about. So what she would have said if the doctor had asked, “How many fingers am I holding up?”, is anybody’s guess?  So the chances are that she would have been taken away for serious tests even though she was just bantering.

Apart from having been told that everyone was alright and it turning out that 25% of the people in the taxi had broken a leg, the more we heard about the whole, the more it sounded a bit fishy and that all due care and attention had not been applied. For e.g. another taxi just happened to rock up so they bundled AJ and her travelling companion in without knowing their names or medical conditions.

This morning we were umming and aahing about putting AJ back into the taxi that might turn up. Then they turned up in this jalopy! Neither the driver nor the carer could open the back door to get AJ in so who knows how they would have got her out again in the event of an emergency. Then the driver asked me to fill a 1-litre bottle of water to pour into the engine, then a 2-litre bottle, then the 2-litre bottle again, then both of them,

“It’s a big engine,” he explained. “With a fucking big hole in it,” I thought…

We decided against putting AJ into this particular wagon. The plot has thickened today – Fo has had meetings with the police and the county council and there seems to have been quite a bit of dodginess on the part of the taxi company but I probably shouldn’t go too far into that here. Just in case I don’t say it often enough and loud enough – my wife is fab. She looks after us all.

Here are some pictures of AJ pulling a sad face – I have even given one a noir filter (as per Ran Joe) for full mis effect.

I couldn’t really have a “you couldn’t make it up” headline and not say something about Brexit, could I? But you couldn’t really make up the fact that a government report says that all Brexit scenarios are bad and then have a government minister say we should ignore that report.

So just to recap for those of you who are still reading and vaguely engaged by this point:

David Davis – Brexit Secretary, Brexit Bulldog, assured us that they were carrying out all sorts of impact assessments into what might happen to the country once we had Brexited. This would have been the sensible thing to do IMHO.

A few months later he admits that no such assessments have been made. So we are going into this blind.

Then it turns out that some sort of assessment has been made. It’s all bad. A hard Brexit would be very, very, bad and soft Brexit would be pretty bad. But it’s all bad. And then a Brexit minister tells us to ignore the report because “forecasts by officials were always wrong” – these would be forecasts commissioned by his own government about the one job his department has been created to deal with. Ian Duncan-Smith came out with the same sort of guff – don’t believe what the people who know what they are talking about – listen to us because we believe (I paraphrase).

Having been a bit of sad leftie for all my adult life, I have often been accused of utopian, pie-in-the-sky thinking “yeah man, if we just paid all our taxes and got rid of the nukes, we would be able to pay for a fully functioning health service and maybe even not have to force the disabled into having to take inappropriate, demeaning jobs, I dunno, I am just putting it out there.” But if there was one thing you could rely on in a Tory, it was they were cold-blooded realists. They’d not pander to some airy-fairy theories, they’d get things done in the most efficient way possible. The economy was everything and everything had to be set up to ensure the economy was smoothly oiled. So if this meant exporting food from Ireland in the 1840s during the famine or importing coal from Poland during the Miner’s Strike or imposing austerity in the face of a massive global economic slowdown post 2008 – well this was just the common sense.  The Tories have never been ideologues – they are arch pragmatists, which is why they are one of the most long-lasting political organisations in the world.

Not this lot – they have inhaled some pretty potent and noxious gasses. They’ll take us off a precipice before they’ll admit they are wrong.

 

2017 – well, yeah

Blimey, it’s blowing a hooley out there. The weather is feeling suitably wintry and I am feeling reflective. I have said it before, and I will say it again, as a blogger you have got to mark your milestones. It’s that dead period between Xmas and New Year, I saw a funny meme (oh God I have spent too much time with an 11-year old) about how you feel festive in the run-up to Xmas and then just fat for most of January but in this in-between time you eat cheese and wonder what day of the week it is. So, tis indeed a time to reflect upon the greater cycles that govern us.

I was out this morning tackling a pile of wood that we chopped down last year. It’s now the time to collect it from the field and stack it inside to dry fully to keep us warm next Christmas. It’s why we make chutney, you lay things down to pick up further down the line and enjoy the fruits of your past labours. Oooh, I think I am going to go full Lion King and present a child to the future generations and chant.

Failing that, let’s look back at 2017. I was putting together a “Faces of 2017 Quiz” for New Year’s Eve, so went through the People We Lost pages in the paper and 2017 was a lot kinder on the great and the good than 2016… obviously not for the people who actually died in 2017. But where 2017 we lost David Bowie and Victoria Wood, for 2017 it was Bruce Forsyth and Johnny Hallyday. So, that’s errr, great.

Well, I should probably steer clear of politics, but I won’t… We had a General Election and it was well, basically, the biggest political miscalculation we have seen since someone decided to call a referendum to resolve the “European Issue”, way back in the mists of time when dinosaurs roamed the sunlit uplands and David and George were masters of all they surveyed, circa: the year before last. How we managed to go from what looked like a dead cert of Teresa May consolidating her hold on power to do with it what she willed, to Jeremy Corbyn looking like the sensible option, is certainly beyond me. I think it’s great but I certainly didn’t see it coming. For what it’s worth, I didn’t vote for him and I wouldn’t until he had a clear plan for Europe. But what a complete, total, fascinating mess.

If this wasn’t the actual reality that I, my family and so many people I know and love were living in, the current political landscape is a thing of scandalous beauty for the beholder. Who cares that Kevin Spacey is too morally repugnant to continue in his role as President Underwood in House of Cards, the U.S. remake of the classic BBC series? Neither of those series have got anything on the reality unfolding before us. On the “oh, come on you are really taking this too far” test, real Trump scores far more highly than fictional Underwood. “Oh, come on, just a whiff of collusion between a U.S. President and Russia would bring the whole house of cards tumbling down! …surely…? wouldn’t it?”

And what’s more! While some 25 years separated the airing of the U.K. and U.S. versions of the series, we have the two running concurrently! Exclamation marks!!!!

Meanwhile on the home front… Otto has hit secondary school and… and I really shouldn’t write about him anymore online. So no more photos of him in the bath, marked Public on Facebook and certainly no rants about “What the bloody hell happened there? Why did no one tell me that just because you had got them to sleep through the night and not poo in their pants you hadn’t actually Achieved Parenthood? That there was a whole lot more poo to come and very much outside of the pants (I feel I am stretching this metaphor)”, however cathartic such a rant might be.

So, onto Ava-Jane, after all this blog is supposed to be all about her… well, she is still the most fabulous creature alive. She is still having the occasional fit but I think we are getting the meds balanced and they seem to be less frequent. They do leave her a bit shell-shocked. Fo could see she had had one today even though she saw her a long time after it had happened. But other than that she is really progressing with her language. She managed to tell Helen that she had had a bath yesterday and didn’t need one today – needs must! Really importantly, I think she can focus on things for longer stretches of time.

I am not someone who generally or genuinely reflects much about the future. It has always seemed to have crept up on me, which I enjoy. I like history and the cycles of nature, viz chutney above. But the future, who knows? I think this is especially true for AJ, no one lives for the moment like she does. If she is having a drink of milk and you put a fluffy toy on her table to cuddle with while she drinks her milk, she’ll chuck the milk on the floor and cuddle the fluffy toy. Then when she has had enough of cuddling the fluffy toy, she’ll chuck that on the floor and say, “milk, please,… floor” while transfixing you with her piercing blue eyes. I don’t think she really feels complicit in the milk being on the floor, so exhorting her not to chuck it on the floor again doesn’t get you very far.

So we should all be more like Ava-Jane: live for the moment, giggle as much as you can and if you have made a bad decision and chucked something on the floor that you want back again, you only have to ask and look cute (FYI in this laboured metaphor, which is even more stretched than the one above, the milk represents the EU, so remember: Milk = EU.) Essentially all we need to do is realise that we didn’t want to leave the EU after all because it wasn’t that bad and all this leaving was a bit of a pain in the arse, flutter our eyes at some Eurocrat and ask to come back in again, bitte schön and Roberto is your mother’s son. So, all very unlike AJ dropping her milk or likely to happen. I think our milk is staying on that floor and even if we do a really sad face, no one is going to pick it up for us, that’s where it’s staying, down there with the fluffy toy and our table will be empty and we will be hungry and thirsty and bored.

And on that happy note, I bid you all a great 2018 from us all.

 

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AJ with Auntie Lau-Lau

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Zac’s Engagement Party

Efforts to get all nephews and nieces into the same picture at the same time proved fruitless – herding cats. So I have added Molly leaning seductively on Josh’s should and looking beautiful almost impercetibly into this one. 

No Brexit… promise! No, really, no Brexit.

For those of you fed up of my Brexit rants or for those who like the rants but feel blue about Brexit, watch this little video that Ava-Jane and I made. Click HERE

So that’s a bit of AJ for posterity. As you can see, she is still hilarious. Her epileptic-type seizures are getting worse and changing, which feels worrying. We haven’t got beyond trying to up and down doses of various drugs to see what happens. But she does seems very tired and they leave her feeling sad.

And here is a great pic of Ava-Jane, Otto, cousin Connie and friend Minty on a very windy beach in Wales!

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I even made a gif, with other niece Eloise flipping on an even windier beach Wales, click HERE for that one.

You see, no Brexit! I bet you didn’t believe me.

 

Unpatriotic Bremoaner, moi? How very dare you!

I will include the statutory cute picture of Ava-Jane to lure in the unsuspecting who might think this post will be about my darling daughter, as the blog purports to be, rather than just me sounding off again. This one is at Caernaforn Castle with AJ’s absolute bestest buddy Eloise. 

So my father-in-law seems to think that I knock off these Brexit diatribes late at night having maybe had a glass or two of wine… My father-in-law is a very perceptive man!

But in actual truth, I have had this one brewing for a while now. Ever since… well, ever since the last one probably.

So this time what has got my goat is the accusation that anyone who is not fully signed up to backing Brexit is somehow being unpatriotic and “doing Britain down”. This is the kind of thing you might hear from Jacob Rees-Mogg, our own dear B Johnson, I refer you back to his puff piece from the Telegraph or even the kind of thing that Mrs May alludes to with her “citizens of nowhere” concept.

There has always been a tendency for patriotism to be claimed as the sole possession of the right. They hark back to the glories of the British Empire, Waterloo, Agincourt etcetera ad nauseam back to Boudicca though they might prefer to call her Boadicea as all this renaming has the whiff of political correctness gone mad. I mean to say that if the Calcutta was good enough for the Black Hole, what is this Kolkata stuff and nonsense. But there are plenty of other reasons to be proud of Britain and being British: The Levellers, The Chartists, William Wilberforce, Wat Tyler.

And while all of the above could be debated to death, what we have in the present day is a very real and present danger to the very fabric of our society. The Brexit charge is led by what I believe is a fundamentalist wing of the Conservative Party. Their unswerving faith in their cause lets them believe that this threat of a no deal Brexit is somehow the interpretation of the will of the British people.

Threatening to leave without a deal, which some are touting as the only way to negotiate is not the sane business negotiation they envisage. Yes, if you are trying to sell a car and someone makes you an offer that it too low it is entirely reasonable to walk away. There is no deal but you get to keep the car – you are back where you started.
What we are facing is the kind of no deal that we have seen in so many films. This is where a swivelled-eyed loon might have a grenade and threatens, for example, “if you take another step, I will blow us all up!”
We might take some of them of us but we will certainly be doing ourselves the greatest damage.
I have been writing this post in instalments and I am now stone-cold sober and it’s not even that late but today is the day that we have been bombarded with all sorts of fantastically ironic juxtapositions of news. For example:
Last night the PM gave a speech telling the Russians “we know what you are doing” as evidence mounts of Russian state interference in the Brexit referendum. See here. That’s great, very perceptive and brave But then the very next night she tries to fix a hard and fast time and date to leave the EU. Presumably because the referendum was the “will of the people”. But I’d say it’d be worth checking that we are not actually enacting the will of the people of St Petersburg before we charge ahead, no?
We also had the unlovely long-term Brexiteer, Sir Bill Cash, co-opting a cock-eyed view of history to serve his own ends:
“We have just had Remembrance Day. I just want people to reflect on the fact that those millions of people who died in those two World Wars died for a reason – it was to do with sustaining the freedom of democracy in this House.”
So, Sir Bill, that would be WWI when we fought alongside the famously democratic Tsarist Russia and at a time when British women didn’t even have the vote? Or WWII when we fought alongside the famously democratic Communist Russia? And when “this House” is about to push through legislation using a mechanism named after the famously democratic Henry VIII, right?
It’s our past not just yours and other people might believe that the most respectful way to honour the dead of those wars and so many before them, would be hold together a unique union of Europeans that has kept the peace in a continent that has seen centuries of bloodshed.
Something else that has been hitting the headlines since I picked up my pen is the wholesome news related to the Paradise Papers revelations. Now I know and you know that none of this was actually news. We all knew that Lewis Hamilton was a tax dodger, he hardly moved to Monaco for the miles of open highway upon which he could enjoy a good drive. Bono’s a hypocrite, you say?
And, yes, as we are obliged to say, “none of it is actually illegal”, well no, it isn’t, but it is all just a bit grotty. And then you have the owners and editors of the Brexit-loving wing of the British press: the Paul Dacres, Viscounts Rothermere, the weird twins who own the Telegraph and the pornographer who owns the Express all involved. These are the ones that will happily trot our headlines accusing judges who are doing their jobs for being “enemies of the people” or calling Tory MPs trying to uphold parliamentary sovereignty “mutineers”. These hugely wealthy men then have the cheek to squirm out of paying their dues. I, for one, certainly do not feel I need to take a lecture on patriotism from them.
To my mind it’s the same kind of patriotism voiced by people who say “Britain is the greatest country in the world” but then threaten to up and leave if Corbyn elected. So what made Britain great wasn’t the cricket, the eye-watering beauty of a Cotswold village bathed in autumnal colours, our proud democratic history, or our great cultural heritage – it was the tax rate. How shoddy! That seems a rather flimsy greatness to me.
I had better leave it there. I am not sure any of it made an awful lot of sense and I was a bit less sweary than usual but I felt I had to get these things off my chest!
Update:
It seems I credited Mrs May too much. Apparently though she knows that Russia is interfering in elections just not Brexit, even though there is plenty of evidence of precisely that. If Russia is doing what she said it is, it is in order to sow discord in “Western” states and to distract us from working against what Putin sees as Russia’s interests and what better way to do that than to support Brexit and Trump. Putin wants to make Russia great again and one way he sees of doing this is to set everyone else squabbling and you have to give it to him – it’s working! But our PM has decided to side with her sagacious (f)FS, who has no self interests here and somehow decide that Russia hasn’t interfered in a vote that has not only set one important European nation against all the rest but has turned it in on itself and divided a once united kingdom.
From today’s Guardian:
The prime minister yesterday supported the position taken by the foreign secretary, Boris Johnson, that there was no evidence yet that Russia had interfered in Brexit. May said: “I spoke on Monday about the issue of Russian interference in elections. We have seen that taking place in a number of countries in Europe … the examples I gave of Russian intervention were not in the UK.”
Check out this pic of AJ and Nonny with Fo and Otto on their gee-gees in the background.
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Sodding Brexit!

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I am adding this cute picture of Ava-Jane not because it is particularly relevant to this blog post – it isn’t – but she does kind of look like she is saying “Why the hell are you fretting over Brexit? Look at those clouds, it is about to chuck it down and this clown is taking a photo of me!”

The title of this post might betray the fact that it isn’t going to be one about “Hey check how cute my daughter is!” nor “Living with Down Syndrome/Hear Defects/Brain Damage… Yeah… And?” Nope, this is is going to be one from a sporadic series from me of the “What the Fuc* were you thinking?” genre and in which the “sodding” of the title is but a vague sop to the more genteel amongst my readership and everyone really knows I would rather be using a far ruder word.

So has anyone actually read Boris Johnson’s 4,200 word piece in the Telegraph this Saturday? Well, I have! The newspaper delivery gods, (and I do not doubt that such immortals exist) contrived to deliver only the main part of the Telegraph to me this Saturday. I only get the Telegraph on a Saturday because I really like the crossword. So I do the crossword and burn the rest – it burns better than the Guardian/Observer because those weird twins who own the paper and live on a remote Channel Island scrimp on ink… presumably to save money to reinvest in building a throwback medieval micro-state. But I digress…

So anyway, I received a copy of the Saturday Telegraph shorn of the one section that I actually wanted but laden with the wisdom of my childhood chum, dear Boris. Dear, dear Boris. So, yeah, I can’t claim to be some sort of warrior whose hatred of Boris emanates from the envy of class warfare. We are old friends of the Johnsons  – we knew them from when we all lived in Brussels… Yes Brussels.  We went to the same prep school, I am a bit posh too. But… But… I can recognise an enormous self-serving knob end when I see one. And that is what dear Boris is.

So if anyone has been paying attention to the news recently, picking your way through truly important stories and tragedies of hurricanes and earthquakes, you will have seen that out Foreign Secretary, the holder of one of the three great offices of state has opined on Brexit.

However, I imagine that only the saddest amongst us will actually have read the full 4,200 words of the article. I’d like to think that I have taken one for the team by being one of those who has not only read the article but also annotated it. Tragic, I know!

So the media have widely reported and debated the fact Boris has revived the most popular Brexit lie about there being a weekly bonanza of £350 million coming our way post Brexit, which would be spent on the NHS. The details of this have picked apart by luminaries but it boils down to: it’s not £350 million and whatever it is will probably be spent on keeping our heads above water in a post-Brexit wasteland not on dialysis machines. (Ooooh I can spell “dialysis” without the aid of spellcheck!)

So if that was the main headline crap from his article what other nuggets of crap, dags if you will, have I been able to glean from my close reading of the Boris oeuvre (OK, I fess up, I needed spellcheck for “oeuvre”).

Johnson’s (and here I stand with the New Statesman podcast in trying to stop calling him Boris – he is not everyone’s chum!) main thrust is a quite frighteningly nationalistic argument where Britain is somehow greater than every other country in the world. I have heard this “greatest country” thing from people from many countries. This simple fact shows what a ludicrous and dangerous thing it is to say. No two countries can be the “greatest country” and in any case, what metric are you using to measure the “greatest country”. If it is “greatest at being British”, then yes Britain is the “greatest country”. There are plenty of reasons for being proud of being British but none of them derive from thinking oneself superior to anyone else.

But anyway… Let’s get some quotes in to see how Johnson’s arguments make no sense whatsoever even on their own terms. For example, and I will type out exactly what he wrote as he wrote it (He has been accusing journalists of just reading the headlines):

…this country still has chronic problems and at leat some of them have been exacerbated by the rigidities of EU membership – and certainly by the way we have chosen legally to apply those obligations.

Our infrastructure is too expensive – and takes far longer than France or other countries.

OK, so this guy is meant to be the great wordsmith of this government, the risen Churchill. Johnson Major: what do you mean our “infrastructure takes longer” What… to build? …to travel along the Tory privatised train lines? But apart from the fact that your English makes no sense, how come these rigidities hamper us so much but not the French… long-term EU members? WHAT!!!??? Explain yourself, properly.

And then, not three where-has-it-all-gone-wrong paragraphs later, we have:

The result of all these failings (none actually EU related, ed.) – over decades – is that we have low productivity: lower than France or Germany.

FML Johnson! FML, honestly? How much has been spent on your education over the decades? You fucking quote Cicero… Could you really not think of two countries other than France and Germany to make the point about how the EU stifles productivity? I mean those two, literally are the EU. Couldn’t you even think of countries that nobody really knows about, like Estonia, or maybe one that has been genuinely screwed by the EU but is quite classically European, like Greece. Or how about Singapore and Chile – both productive, both a long way from the EU?

And on it goes. He blames EU citizens for the high prices of housing in London as if this might have nothing to do with assorted Russians, Saudis and whatevs. He thinks that we could seize the opportunity of Brexit by “reforming our tax system” (= cutting taxes for the super rich and corporations) without mentioning that our neighbours on the Emerald Isle have been doing this for a while now and their economy tanked even further than ours in 2008. And while I am sure that each individual Luxembourgeois is doing very well thank you. This is not because they are outside the EU – they aren’t! – it’s because there are about seven of them and that’s if everyone is home for the weekend. So if we could reduce our population by approximately 64,999,993 people, we too could do very well by turning ourselves into a tax haven in hock to the great god Amazon.

But the worst of it is the Poundland nationalistic tripe that Johnson comes out with, the “to put Britain in the lead”, “Look at our universities – the best in the world”, “We have more international visitors than any other capital, including Paris and New York” (Boris, you numpty, everyone knows that NYC isn’t like actually the capital of the US. OK, so what’s the capital of Australia? Sydney or Melbourne?)

I think that we all know that Johnson does all of the above and espouses all of these opinions purely for the advancement of Boris Johnson. Recently we have been in thrall to his own personal blonde ambition but for decades now the tories angst over Europe has buffeted us from one side to another. One could argue that every leader since Alec Douglas-Home has been jettisoned for a European-related issue, that’s if one gave a damn.

But it is all so non-sensical, who actually cares? Bhutan registers off the scale on various happiness registers and Scandinavian countries are the go-to exemplars for all sorts of how-to-run-a-country ideas and they haven’t been world beaters at anything since they buried Harald Hadradr at Stamford Bridge.

And so if Johnson’s schtick is that Britain should be somehow great, important and relevant, can anyone tell me how we are showing our “greatness” nit-picking over irrelevant trivialities? Couldn’t we be exerting influence on our special relation to draw them back from nuclear armageddon or how about “putting the ‘Great’ into ‘Great Britain'” by leading the planet out of its spiral into climate catastrophe?

I know that I am peculiarly European and this all matters more to me than it does to many of my fellow Brits. I know that the EU is far from perfect but the key questions I asked to anyone who would listen pre-referendum were:

  • Is it really that crap? Is the EU really so crap that we need to spend every ounce of our political energy for the next five years or more disentangling ourselves?
  • Is the grain of liberty we will gain of political freedom worth the beam of every kind of freedom we abrogate every time we enter our details in an online form.
  • Have we really “regained control” by leaving the EU when there are various multinationals that know more about us than our own spouses and pay only what they choose to pay into our national coffers?

What really worries you on a big scale? Climate change – these storms we are seeing are not caused by climate change but they are exacerbated by the way we have treated the environment. International terrorism? Trump? I mean Trump… I know he is not our President but he could very easily kick off a nuclear war.

Is any of the above solved by Brexit?

If you have made it this far please listen to our podcast. Otto and I have just done a guest episode on the History of England, I am very proud of that!! We also have our own website.