What now and here comes the sun


The sun has returned, hooray. I hope you can see the photo of Fo with the sun in her hands.


We had a glorious camping weekend with friends with what they would call “familia numerosa” in Spain. Franco used to give out prizes for numerous families, i.e. families who had complied with their Catholic duties. So we had a gardenful of tents and kids on the most beautiful weekend. Our assembled friends brought everything that is needed for a camping weekend. Ted, understandably does not see me as the epitome of the alpha male and brought his own BBQ. I do have a rickety one, for the record (…and for the record from Fo “borrowed from your mother). I will try to add some photos of the event.





I think the one of the three girls is brilliant. Alexandra really dug Otto’s home-made Nimbus 2001.

No photos of AJ but she is doing fantastically well. Among the hordes of kids last weekend there were a few little girls around AJ’s age. They all bonded in the most amazing fashion. We left them all together, with AJ laid out on the carpet and they played together for hours. After having to have AJ protected and isolated from the the world for so long it is magical to see her playing with people of her own age.
I think that I have been so focussed on her getting well that I sometimes don’t notice her growing up underneath my radar. I dropped her off at her Jan’s, who looks after AJ, her own daughter and another little girl, today. They are are all real mates and as soon as we arrived Ellie and Emmie (or Izzy and Immy??) ran up to give AJ her dolls. I hadn’t seen all of that before and it is great.
So now that we have AJ happy, we are at a bit of “What next?” moment. I have been reading a book from an excellent recommendation about neural plasticity and Fo has been looking into cranial osteopathy. Both slightly “out there” theories that we discussed with our neurologist today.
The brain really is the least understood bit of us. When AJ had her heart problem, they knew exactly what to do – cut open a tiny person, open her heart and insert various bits and bobs. When she had cancer, they knew that the best way to deal with it was to give her a high dose of extremely toxic chemicals. If, at any stage, we had said that we wanted to turn to homeopathy or Christian Science they would have said that we were barking mad. But our very eminent neurologist’s reaction to both of our suggestions was a wry chuckle and “You might as well.”
The thing is that I very much believe in what the doctors say and what I really want is a good long session with our eminent neurologist and for him to talk us through why this or that is barmy and where there might be value in one thing over another. But hey, this is the NHS, and I love the NHS, don’t I? And how much time with an eminent neurologist can you expect in these straightened times of austerity. Actually, to be honest, I did ask him if he “did” private and he doesn’t. (good on him!)
A propos of nada de nada, I have been listening to two albums that I have on vinyl gathering dust and have now procured digitally: The Best of the Cure and David Bowie The Man Who Sold the World, as I type. It is great to reconnect with music that was backdrop to a time in your life. At one stage the Bowie one would have been one of no more than five albums that I owned, so I listened to it to death. Very much a Jack White eat your heart out album (Max).
So back to AJ, I think the underlying message from our eminent neurologist was that we are doing more or less the right thing and AJ is doing more or less as well as could be expected. We are going to continue to see if she has stabilised after the steroids and see if she continues to improve. The steps she takes are almost imperceptible to us, who see her daily but to someone like our neurologist (dropped the eminent, you don’t want to overdo the repetition for emphasis thing!) who sees her every fortnight the improvements are remarkable.
But as AJ’s steps are small and imperceptible, I imagine my blog posts will become fewer and further between. Hopefully our lives will soon become uninteresting.


Atletico! Andrew Lansley¡¡¡ Bones!!!




I know I am not supposed to blog about football and politics but a couple of stellar mentions to Atletico Madrid and Andrew Lansley and big cap doff and forlock pull to our friend Bones.

Atletico, the Madrid team that is not as famous as the other one, has just won the Europa League, the European Cup that is not as important as the other one. This is earth-shattering news, not literally earth shattering, unlike a very rubbish film I saw last night 2012, which is quite literally earth shattering and very little else. But at the very least heart warming for a team overshadowed by a flashy neighbour from a two-horse league. The most news-worthy aspect was that it Atletico won without agonising pain, unusual for us seasoned Atletico watchers.

I don’t want to dwell for too long on Andrew Lansley, the Secretary of State for Health. But I think it would be remiss of me not to point out what a complete jess he is. Not publishing your own risk report on what the impacts your mad reforms might have is incredibly cowardly. It is a bit like burning your really crap school report and hoping your parents won’t find out. You know they will and you will be in the doo but as you are in the doo already it is worth a shot. I won’t go on about it but if you would like to see more, go to: Lansley vetoes publication of risk report (I hope you liked my upside down exclamation marks¡¡¡ If exclamation marks mean yay! Then they must mean boo!!)

And on to a more joyful topic… Mother-of-five (as I am confident she would hate to be introduced as) Bones ran the London Marathon in aid of the Down’s Syndrome Association. For someone for whom just typing “ran the London Marathon in aid of the Down’s Syndrome Association” (I copied and pasted it that time) is a chore, the concept of actually “running the London Marathon in aid of the Down’s Syndrome Association” (and again with an edit) is amazing. Coincidentally both the Madrid and London Marathons take place around and about my birthday so I have quite often seen them go past on the Sunday after a Saturday night of birthday celebrations and quite hungover. I imagine that this has made running a marathon seem even more laudable to me. So many thanks and enormous respect to Bones.

Ava-Jane? I hope you can see the pictures on this blog (I have had people reporting problems). There is something in her eyes that is so charismatic. That is what it so excellent to see returning.

Not much to report but some nice pics

Looking at my destiny

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Otto does not often like having his photo taken. But the other day, taking advantage of a rare moment of sunlight, I whipped out my camera (iPphone 4GS actually!!) to take some pics. Then, out of nowhere, Otto struck this hilarious pose. “What are you up to?” I asked. “I am looking at my destiny.” It took him a few shots but I think he got the look. Apparently it is from Star Wars. And he is working towards some Luke Skywalker locks.

There is not really very much to report. AJ is getting better everyday but very slowly. To a certain extent she seems to be relearning a lot of things that she had previously been able to do. So she is playing with things, appreciating TV, trying to feed herself and brush her teeth. There is a whole load that still she cannot do – sit up, crawl, use her right hand. But seeing some improvements gives hope that more will follow. It is a slow process which, by being with her daily, is sometimes hard to appreciate.

And the good thing is that we , and AJ in particular, can start getting back into society. You’d have hoped that you wouldn’t need to be getting into the middle class angst of fretting over a choice of schools untill they are a bit beyond their third birthday. But as there are very few schools that can cope with AJ’s sort of condition you are lucky to find a good one near where you live. But it looks like we have – Booker Park in Aylesbury. Fo went to see it a few months ago and felt it was ideal. AJ will have to commute! She is going to do two days there and a morning near us. She goes to a child-minder, Jan and has made her own buddies, El and Immy. AJ has always been able to make people of all ages fall in love with her and of all the abilities she is recuperating that is the one that is most important and will stand her in great stead for the future.

And that is where we are. AJ is back to old self again if ‘self’ is defined as inner spirit. She spends most of her waking hours laughing about something, keen to be involved and so deeply appreciative of any attention that it breaks your heart. She has sprouted the most hilarious spike hairstyle and looks completely bananas. I can’t resist having her in my arms on all occasions, she is the very best of cuddlers even one-armed. I am slightly in awe of her; to have gone through what she has and is going through and to still be grinning commands respect.