Many thanks

I wanted to slip a photo of AJ with one of her sad faces into a blog. All the photos in the blog are of her smiling but I think she can often look at her cutest when she has got her massively sad face on. This is the “no one has been sadder than this, ever” face.
I have been trying to capture this face, so here are a couple:


I think it is a face of great emotion to live amongst Sinead O’Connor’s tear or Woody’s face in Toy Story, when he realises that he is not Andy’s toy of choice, as one of the dramatic turns of our times.

This was supposed to be a largely grateful blog post but I seem to have swerved off topic so for those who know and love my mother here is a video of pandas that appeared on Chinese TV, well worth a watch, with Mary look doubtfully on.


Thanks very much everybody for the donations for our sponsored walk. I slightly feel that we did not sweat quite enough blood and tears to merit your generosity. The walk really did not consist of much more the a wander in the low bit of High Wycombe. We did do a loop across the playing fields to make sure that we did the full 2 kms of the challenge.

AJ had a bit if a cold, and when she gets a cold it sounds worse than on most kids, so we thought she would be better off without the outdoor stroll. So it was even less arduous for me than it might have been as I did not have to push AJ or carry her. The last time we went on one of these walks, AJ was on. My shoulders for much of the way. She would not be able to do that now because of her balance.
I would also like to thank everyone who helped organise it. It is quite hard to get this kind of thing off the ground, you have to apply months in advance to get a permit to ask for money on the street. You can get your permit for a shopping centre to rattle buckets relatively easily but you are no longer actually allowed to rattle buckets or ask for money too insistently; you can’t beg too beggingly. Otto and AJ make a great fundraising team, we push them out front with Otto and his Puss-in-Boots’ eyes asking for money “to help mi little sister speak” – they are quite irresistible. The competition is quite stiff. As we came in we eye-balled a creative building for special needs children’s charity… very much in the same same emotional range as us… Rivals? We also had Adopt a Panda behind us, and yes well, who can resist a panda? It would appear that our son is now a father, having adopted a panda… Does  that make us grandparents already, if only of the adopted panda variety?



A little plea

I hope I have not done this too often… We are doing a sponsored walk for a charity that is very close to our hearts, Sparkles. They do great work helping Down’s Syndrome kids to talk and communicate generally. AJ has been going for a few years now and loves it.
It will not be the most arduous of sponsored challenges, I know some of you would like to see do multiple marathons through the desert or similar but for now it is a 2km walk through High Wycombe, a place known for its hills, and pushing AJ, probably in the rain! So pretty hardcore all in all.
Just Giving
In other news our au pair arrived today, which is very exciting. She is a trained physiotherapist so we hope she will be a great help with AJ so we can continue with the techniques we learnt at the Peto on a regular basis. She is from Transylvania but went to bed early, so that is a relief! And brought us some bear salami, which is pretty cool. Otto’s joke “if I have a bear sandwich in my lunch box will that be an empty sandwich?”
A slightly random pic of Fo dressed as a Fairy for Lou’s wedding, looking pretty hot in my opinion.


Home Again

Ah that worked well, I hadn’t gone for the ‘circles’ option before for a gallery. I am just going to pop a song in too.

Well the blog probably has to wind down a little, we’re all back home and getting on with life. But getting home is all part of the adventure and it is great to be back. Returning to work, has been much better than I thought. Otto had his first day back and was so excited to be going to school that he was fully dressed and ready to go a full quarter of an hour earlier than necessary. I know some kids are speedy but this has never been one of Otto’s attributes.

It is definitely a Facebook favourite to show pics of kids setting off for one stage or another of their educational career. So there are a couple above of Otto getting onto the bus for the first time. He is the first kid on the round so has a massive bus to himself – he looked very little, but gave us a thumbs up and loved the whole experience. He is now in a slightly bigger but still very small school, where they go from 7-11, so he is back to being one of the little ones again. This does not seem to phase him as he knows quite a lot of the older kids already, having been with lots of them in the small school.

AJ’s education is still under consideration. She is starting proper school next week. She was born in July so she will always be one of the first of the school year intake she should be in. What with everything else she has been through, it does seem a bit harsh that she will also have to struggle with being one of the youngest in her class. But there are other options, such as PACE which does the same conductive education as the Petö Institute. Every parent’s life is fraught with decisions on choices for how best to nurture a child. But adding multiple disabilities into the mix adds a kind of Rumsfeldian “known unknown”, which is AJ’s case. We know that there is a whole lot wrong with her but it is hard to work out exactly what. For example, is her difficulty with speech more related to the Down’s Syndrome or the brain damage? So, if we want her to talk, should we put her through an educational system that was geared to the known known of DS or an educational system designed for the known known of cerebral palsy?

Fo has got AJ to herself for a couple of days longer than planned, her school does not start until next week, not today… We have had a few calendar confusions since we have been back! They had a great time together without the boys. Fo feels that AJ is enjoying doing things more and understanding what is going on around her. So if Fo goes to catch a horse she looks forward to them coming back rather than feeling she has been abandoned.

We’ve been piling in the BBQs since we have been back – England in the sun really is glorious. Slightly typical of us that we left the UK during a heatwave, where you do want one, to Hungary during a heatwave, where you don’t want one. Brits are so genuinely grateful for good weather that the whole country is lifted. It also seems serendipitous that it should happen when nothing else is happening, 2013, an odd-numbered year, so no major sporting events, other than a Ashes series between two substandard teams. A Brit did win the Tour de France, which would have been massive news if it had not happened just after another Brit winning it just the year before… And Andy Murray won Wimbledon… Yay! Even the joyous news of the birth of a Prince probably didn’t match the Royal hooplas of last year. Thankfully, being in Hungary with my UK news being filtered through the Guardian, I was not overexposed – unlike the Royal baby himself.

I suppose what with the one thing and another we have been through, we really appreciate all being together, at home, safe. We had an amazing barbie this evening of our lamb, Mum’s chard and beans, Valerie’s amazing tomatoes – a meal from our friend’s and family. Admittedly the potatoes were bought but they came from the village shop which is selling people’s allotment crops.

Though, there again, it is probably the onset of middle-age that makes me appreciate tranquillity so much. Hey, Ho!

A little slideshow of AJ grinning

This slideshow requires JavaScript.