AJ’s op date and a rant

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my little golden girl

Well, we now have the date for the op and it is really upon us — Feb 11th. We had been told that we would be in a process that would probably end up with a mid March date for the op but there’s a slot and we fit. Emotionally it is an odd one because if it all turns out OK, you want it to happen as soon as possible and get it out of the way but if it doesn’t, you want to wait for as long as possible. Put it off. Keep her as she is. Because she is on absolutely flying form and it feels so unappealing to jeopardise this.
Boro has been away for a couple of weeks and as she predicted, it has allowed AJ to embed the learning that they have been doing together. I had AJ on my knee a lot this weekend and her balance is massively improved, so that she really can sit unassisted for a few moments. She is also far more communicative. Fo puts this down to spending time with Cedar, our rent-a-dog, AJ spends a lot of time keeping Cedar up to date on events. They certainly seem to understand each other even though AJ is babbling and Cedar is deaf.
We’re all glad to have Boro back with us. Happily for Otto she had a story to tell of getting lost in the forests of Transylvania and coming across bear footprints just as the night fell. Having an au-pair who gets into scrapes with bears while snowboarding in the forests so Transylvania on her holidays is obviously amongst the cooler things in his short little life.
While on the Boro subject and strictly only for language acquisition geeks:
Boro, “We found this thing, you know, a bit like a horsebox, L…, L…, L…”
Us, “A lorry?”
“yes, that’s it. A lorry.”
It’s only by hanging out with us that you would learn the word for “horsebox” before you learnt “lorry”. She is also very familiar with terms such as “dilly-dally” and “dawdle”, that’s from hanging out with Otto.
London friends alert: so we are going to be in London 10-23 Feb and very much up for entertainment and lodgings round and about Russell Square. Week 2, planning to have Otto with us over half term to get to know the city.

The Rant
Between updates on AJ’s health woes, pictures of my gorgeous family and general tales of the Baxters, I have peppered this blog with the odd political rant. I am an opinionated old git and so I enjoy using this platform to get things that have been troubling me off my chest. I haven’t had one for a while and so I feel the time has come. As ever, please note that reading this is entirely optional, so if you think the Guardian is akin to the Socialist Worker, are uber-patriotic or Michael Gove (UK Education Secretary – Conservative), please STOP READING NOW.
…Gove’s a git… OK just checking.
Well this is all about the current debate on how we should be remembering the First World War (WWI) in this, the centenary year of its outbreak. What is for sure, is that we will be remembering it, again and again with blanket media coverage and that is right, it was the historical event that shaped the 21st Century but how should we remember it? We have now reached the point where there is no one left alive who actually fought in the conflict and very few, who were old enough to have been alive while it raged. Our memories are now filtered through books, films, TV programmes and crucially the teacher who educate us and are educating our children.
This memory has become a politicised debate as Gove argues that the memory of WWI has been tainted by the left and we have forgotten the heroism of the soldiers, the basic decency of the Generals faced by a terrible situation and the difficult decisions politicians had to take. His theory is that there is a narrative arc from Oh What a Lovely War to Blackadder, presented by the arty-farty establishment that undermines what was an example of what puts the “Great” into Great Britain. It should be noted that the massed ranks of historians, including his Labour opposite number, who is a historian, disagree.
The BBC kicked off its programming on Monday night with the first of a four-part series presented by Jeremy Paxman. For those of you who don’t know him, Paxman is best known for being an especially combative interviewer of politicians with a well-known sneer and an apparent disdain for his interviewees.
Given his disdain for politicians, it was somewhat surprising that Paxman seemed to have swallowed the Gove line. I was very keen to watch this programme as I had heard him being interviewed about it on a history podcast and I wanted to see how what he said translated into the documentary itself. Because I had disagreed with a whole lot of what he said and it didn’t disappoint – I also disagreed with most of the thrust of the programme.
I’ll be paraphrasing and quoting out of context hugely here but given that Paxman is the target, I won’t lose too much sleep. Both Paxman and Gove seem to have a particular beef with Blackadder. For those of you who have not had the joy of watching the fourth season of Blackadder, the set up is that the main character, Blackadder, is a Captain who is utterly cynical about the whole war and shares his trench with an idiotic, upper-class Lieutenant who thinks it all a great adventure. The leader is the pompous General Melchit, who cheerfully sends thousands to their deaths with absolutely no regard for their lives.
Both Paxman and Gove see this portrayal as part of the liberal left agend,a starting in the 1960s, to promote the idea that the tommies were lions led by donkeys. But this is to ignore that the donkeys/lions idea came from Alan Clark, Conservative MP for Kensington and Chelsea. If you really want to read the inspiration for General Melchit, read this poem by Siegfried Sassoon, enthusiastic volunteer in 1914, written in 1918.

The General
‘GOOD-MORNING; good-morning!’ the General said
When we met him last week on our way to the line.
Now the soldiers he smiled at are most of ’em dead,
And we’re cursing his staff for incompetent swine.
‘He’s a cheery old card,’ grunted Harry to Jack
As they slogged up to Arras with rifle and pack.
. . . .

But he did for them both by his plan of attack

That doesn’t sound to me that this was a stereotype entirely dreamt up in the post-1960s liberation.

So anyway, back to Paxman, if we must. He speaks of a spirit of shared endeavour that we have lost since the advent of the individualistic, hedonistic 1960s. He thinks that we have lost the idea of sacrifice and we cannot speak of it without coupling it with the word “pointless”.
So let’s think about this spirit of shared endeavour and this idea of sacrifice. I would say that this is the same spirit and idea that in your enemy you would call “bloodlust” or “fanaticism”. It really is worth trying to think the way other people think and to try to look beyond our worldview. Our current enemy number one, the jihadist, doesn’t think of himself as a fanatic, he thinks he is doing the only sensible thing, by laying his life on the line, by sacrificing himself for what he holds dear. These were the same sentiments promoted by the British recruitment propaganda.
Paxman shows us a popular politician who toured the country whipping up crowds to volunteer and revels in the story of the Hearts team that volunteered, promoting a rash of their supporters to volunteer alongside. Given what we know was the end result of the war, is this kind of spirit something that we want to fete? Is this an idea that we want to promote in our children?
I was going to just use the last line from the Wilfred Owen poem below, but somehow that would be not right, because as a whole it is the best refutation of the whole Gove concept that we should somehow teach our children that there is somehow something worthwhile in sacrificing your life for your country.

Bent double, like old beggars under sacks,
Knock-kneed, coughing like hags, we cursed through sludge,
Till on the haunting flares we turned our backs
And towards our distant rest began to trudge.
Men marched asleep. Many had lost their boots
But limped on, blood-shod. All went lame; all blind;
Drunk with fatigue; deaf even to the hoots
Of disappointed shells that dropped behind.

GAS! Gas! Quick, boys!– An ecstasy of fumbling,
Fitting the clumsy helmets just in time;
But someone still was yelling out and stumbling
And floundering like a man in fire or lime.–
Dim, through the misty panes and thick green light
As under a green sea, I saw him drowning.

In all my dreams, before my helpless sight,
He plunges at me, guttering, choking, drowning.

If in some smothering dreams you too could pace
Behind the wagon that we flung him in,
And watch the white eyes writhing in his face,
His hanging face, like a devil’s sick of sin;
If you could hear, at every jolt, the blood
Come gargling from the froth-corrupted lungs,
Obscene as cancer, bitter as the cud
Of vile, incurable sores on innocent tongues,–
My friend, you would not tell with such high zest
To children ardent for some desperate glory,
The old Lie: Dulce et decorum est
Pro patria mori

(Dulce et decorum est
Pro patria mori = it is sweet and right to die for your country)

I think that we should not forget what we are remembering this year. We are remembering the very beginning of the 1914-1945 period that included not only the two World Wars but also the Spanish Civil War, the Rape of Nanking, the Winter War between Finland and the USSR and the aerial chemical bombing of Iraq by Britain (oh yes, we invented it!), the Holocaust. Is there any bit of this that we want to pass on to our children as in some way a model?
There were some social advancements, such as the franchise for women that were undoubtedly accelerated by the war but I’d imagine that only the most strident of feminist would say that the death of ten million men was a price worth paying for votes for women. We could have got there by other means.
Paxman touches on one of these social advancements when he casts his supremely humorous ironic glance on the fact that Sikh soldiers were treated by white nurses in the Indian-inspired Brighton Pavilion. He doesn’t stop to ask what the bloody hell Sikhs were doing fighting for the freedom of Belgium as part of a convoluted web of alliances to defend the British Empire. And we should be clear about that, we did not go to war to defend the freedom of Belgium in the same way was we did not go to war in WWII to defend the freedom of Poland, we went to the war for the same reason as we have been to war in Europe for hundreds of years: Britain will not allow one force to dominate Europe and restrict our trade.
So finally back to history, we really should not forget and we should treasure what we have. I was born and have spread into middle age with only the shadow of nuclear Armageddon and inter-faith war hanging over me. I, myself, have never had to get out of my sofa to defend my hearth. The year we really should be celebrating is 1915, which represents sixty years of European peace punctuated only by the odd Balkan genocide, but they would spoil the party, wouldn’t they? This is absolutely unique and something that we should consider before we all vote UKIP in the next Euro elections and beyond. Sixty years in history is really a very short time. We waited for one hundred years between the Napoleonic wars and WWI, before we embarked on another European war, and it was another hundred years before that that brought to a conclusion the War of Spanish Successsion, is that the time-span we need to forget the folly of war? Because if so, we are just hitting a critical period and we should be very careful to remember. This article by Franz-Walter Steinmeier, a German minister is worth a read:
1914

Hanging with the kids

While I thought this was a cunning combination of entertaining the child and housework…

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…it was not entirely successful!
AJ is modelling her excellent remote-controlled car. She loves it. I think it gives her a feeling of independence as it is the most she travels without someone next to her. But it didn’t quite work having her push the vacuum cleaner while I drove the car remotely…. I am not a very good driver.

I am just at the end of a day looking after the kids while Fo has been out on her horse. Since we have had the inimitable Boro with us, I haven’t done the full breakfast to tea stretch that Fo does regularly. It reminded me how hard it can be. Otto is no problem, he can amuse himself in any one of many ways – Lego, T.V. Minecraft, or general running around in a world he has created. As he said today, “There really is no limit to the imagination!” I am not sure which corporate slogan that he was referring to. Ava-Jane really can’t amuse herself in the same way.
Hanging out with AJ is a massive laugh. You focus on her and you get so much back. She just thinks life is hilarious and if she touches her nose and then you do, there has literally been nothing funnier… ever!
However… However, however, however, when she is not getting your attention, she doesn’t find things quite so amusing at times. Sometimes she will get totally involved with her toys on the floor. Though Boro doesn’t like her rolling around as she get her legs overextended and tight when we are trying to get her to relax her legs and bend them. And she is doing it so much more, she is beginning to get a far better, straighter posture.
But anyway, as I was saying, if she isn’t into her toys, she can get quite royally f**ked off. Generally by four and a half, you’d hope that a kid could entertain themself. But obviously, for AJ it is so much harder and everything is that much more frustrating. All kids hit that moment when they can’t reach something and it is very annoying. That happens to AJ all the time, where for most kids it is just a vertical problem, AJ has it horizontally. Her stuff can get out of her reach quite easily and then she’ll start to squawk. And it is impossible to leave her unhappy.
That’s the thing really, it is basically to impose the sort of discipline on AJ that you would on any other child. If you try to tell her off, she gives you the saddest face, as in no one has ever been sadder since the dawn of time, see previous example below. She has a tendency to jettison stuff, so today when I set her up with some toys on her table next to me while I cooked, she played for five minutes and then just started chucking them in the floor. You pick them up, she chucks them on the floor. You tell her not to, she chucks them on the floor. You tell her off, she goes nuclear sad on you. You pick her up and cuddle her and tell her that she is the best girl in the world. You put her back in her chair, give her the toys, she chucks them on the floor.

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Given my background, her language learning is something that worries me. There is a theory about there being a critical point for language acquisition. It is very under-researched as, to really prove it, you have to get a child and deprive them of human contact and speech during their formative years, and that just ain’t that ethical. It is based on studies of feral children, who have been completely neglected and fortunately they are few and far between. So the theory is that if you have not acquired the basics of language, specifically grammar, by a certain point, pre-four I think, you never will.
I would love it if AJ learnt to speak but I doubt whether she will ever be able to form full sentences. At the moment we are really working on her using two syllables. She can do Mama, Dada, Bobo (for Boro), BaaBaa, Moo, ByeBye, Oooottoooo, but basically no words beyond two repeated syllables. She does also have a number of signs that she uses and prefers, so she won’t say NightNight, but prefers to wave.
On top of all of this, her voice gets quieter and quieter the more she tries to speak. We’ve been doing lots of calling Otto, the idea being, that she calls Otto and he appears, so she learns the value of speech. So I cup my hand over my mouth and call Otto, he pops up and she repeats it. But she puts her hand over her mouth and whispers Toto and even if he is lurking just behind the door, he can barely hear her.
The thing is that she is incredibly talkative. She can do multiple syllables and talk loudly, buuut, it is just not in English. She has recently suddenly taken to staying up late and not sleeping during the day and she’ll be awake til 11 (I have had her harmonising with J.J. Cale on the intercom as I write) chatting to her friends in bed, she goes to bed with a fantastic array of soft toys (fave still Brave Little Lion from Tash). So she is probably learning language in completely her own way and will output it in a variety of different forms – words, noises, signs – and we will just have to keep up. Nothing makes AJ happier than if she has been trying to tell you something and you finally cotton on.
It is quite odd that she is awake so much. We had expected her to be losing energy, supposedly she will be getting progressively less oxygen round her body until she has her operation. We still have not had a date for her operation, it looks increasingly like March. But she is on absolutely top form, full of beans. In many ways, the fact that she gets frustrated that she can’t do stuff is a good thing as it means she wants to.
I hate to moan and I especially hate to moan about AJ. It might sound trite but I really wouldn’t change her for the world. Every kid is unique in their own way, but I think it would be fair, if grammatically incorrect, to say that she is uniquer than most (‘unique’ is a two syllable adjective, so should take ‘more’ rather than -er in its comparative form… Man I am a geek! FYI that does not cover this post being well proofread, I have just found my father-in-law’s Xmas bottle of Port.)
Back to the point… AJ might have all sorts of complications that make looking after her difficult but it is hardly as if any child never presents a challenge and, as I have often said, Otto might end up being a junkie and causing us a whole load of heartache of a different sort.

2013 Review

Exhibition

AJ at the Peto

I have not blogged for a while but I feel I should stick to tradition and attempt a “Review of the Year”. I have been back through old posts and I seem to have had catch-ups and retrospectives on 2011 and 2012.

So, I have my slippers (well Crocs) on, got a bottle of wine and a box of turkish delight, some late era Robert Plant, the fire is lit and the Christmas tree is still twinkling before its inevitable demise tomorrow and I will try to sum up our year and see what 2014 holds.

Well in very summarised summary: 2013 was all about Hungary and 2014 will all be about AJ’s heart op but that is probably a little bald. This Christmas marks two full calendar years without us spending a night in hospital, so I suppose it was inevitable that we were up for a little more.

Very quickly Christmas: All stressy work-related build up for me. A couple of great community nights with the village people. Perfect, small-scale, disaster-free Christmas day with my sister and family and my mother. New Years with friends, bit of dancing, lots of drinking, hangover. Then… an extended pyjama day, five days of hermitage. TV. Books. Risk. Onesie (Otto, not me!) Ahhh

risk

(Those who know me of old, and have played me at Risk, will know that within this professed Guardian reading pacifist lies a rampant megalomaniac and I am glad to have passed this urge on to Otto, after all, what better name for someone with an eye on European domination.)

In Spain, the main Christmas tradition is for the three kings to bring the presents, which makes sense as they were the ones who actually brought Jesus some goodies. Whereas the shepherds, who presumably turned up on the day, did not go down on record as actually stumping up with some gifts. As I work for a Spanish company, this means that we mostly have an extended break but Monday looms.

I said that 2013 has all been about Hungary and being able to spend some proper time with AJ again reminds me of all the time we had together in Budapest. Hopefully this does her some good but I do know that hanging out with AJ is the best thing imaginable for me, a slightly selfish way to look at things perhaps. It is, as ever, hard to sum up where AJ is in terms of progress: Can she walk? No. Can she talk? No. Is she making small, almost imperceptible improvements that mean that she can is increasingly involved with everything? Yes. One of our main highlights of 2013 is that we have brought Hungary with us in the shape of Boro.

Boroka (Jasmine) is AJ’s au pair and the only bad thing about Boro is that we will never be able to have another au pair again, because no one would match up. Above all the absolutely adores AJ, this is not hard but this obviously wins me round. She is also a fully qualified physiotherapist so is continuing with the same kind of exercises that AJ was doing while we were in Budapest. We had had a person staying with us under orders when Fo was not well after Otto was born and she was a complete nightmare, really fussy and unhelpful and I dreaded a repeat of this experience. Boro is from Transylvania so fitting in to out family might have been tricky but she seems to relish it, she makes apple juice with my mother, has English lessons with me and feeds the sheep with Fo.

So we feel that we have made some significant improvements this year. She is far more involved in her own decisions than before. She cannot talk but she does communicate and nothing fills her with more glee than when you finally understand what she has been trying to tell you for ages.

My own personal take on things is to take things as they come. Fo has a more hard-headed determination than I do and is confident that AJ will walk, it might not be the most stable of walking but she will do it. I would like nothing more but as an eternal sceptic, I will put everything I can into her doing all she can but, que sera sera. She is already the most incredible piece of humanity. We all went to the pub for carols, pints and a raffle, AJ sat at the back of the pub and had a ring of little people around her, entertaining her and being entertained by her. She does this… She has a light…

So on to 2014… Aaargh… We got the letter from Great Ormond Street Hospital (for the non-Brit readers, this is a very famous hospital and there could be no better place to be) the other day. From what we can work out, between the X number of weeks before our initial consultation and the Y number of weeks after the consultation, she will be having her op some time in early March. This is later than we had thought. It might be that we are looking too closely but it feels that she is slowing up a little and her extremities are looking a bit blue… Is she already short of oxygen? Should we jump up and down? She has got an appointment on Thursday, so we will take it from there.

It is gonna be hard. Fo posted a pic of AJ after her first heart op on Facebook and then regretted it as it is a harsh image. She is bigger and stronger now than she was then but I do so wish that she did not need to be chopped open again and could just be left alone. I will try to keep up to date on how it all goes on the blog.

In Memoriam

Part of the tradition of the yearly retrospective is to recall those we have lost over the year. For me, 2013 has been particularly harsh. I have lost my uncle Colin, my cousin Angus and my very good friend Ruth. I don’t think I can write much about how much each of these people meant to me but their loss leave massive holes in my life.

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Me and my Madrid gang, Ruth is to my right.

 

Skype-1

Various family members, Angus in blue connecting via Skype with his wife Nidia and daughter Yasmin in Brazil.

 

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Angus bouncing AJ.

 

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Unfortunately I do not have a picture of Colin on my computer but this is an image from his funeral, with a kilted piper with a snowy Scottish hillside behind him, which as good a way of remembering my uncle as any.