These photos, taken at Otto’s sixth birthday party, might seem to resonate childlike innocence but they belie the pall that was cast over the proceedings. My in-laws, as ever, loyally made an appearance at Otto’s party. And they brought their Border Terriers, not so affectionately, known to the family as “The Rats” with them. I have spent far too many hours of my short life standing outside in all weathers calling for Maude and Maisy, names that inevitably make you sound a bit of knob when called, trying to imitate your mother-in-laws voice! Generally they disappear after quarry either too big for them to tackle, such as deer, or too fast, such as rabbits. But not this time. Our next-door neighbours have chickens that like to roam in our field… Yup, you can see where this is going can’t you? In full view of the party, the rats ran down two chickens into the undergrowth, all we could see was an explosion of feathers and we feared the worst. Father-in-law went to check the situation, came back saying everything was fine and absolving his dogs. Shortly afterwards the neighbour and her daughter, in floods of tears, begged to differ. One chicken was missing, presumed dead, and another had been left featherless and would probably die too. It would seem as if our neighbours are very close to their chickens as apparently they had taken them to the vet last week with colds.
But it has all turned out fine in the end – the MIA chicken has returned and the featherless one has pulled through with no further damage other than to its dignity.
As it turns out the apparent tragedy was averted but we have had a dicey couple of days waiting to hear if the chickens scraped through!
The party went very well. We decided to invest in a bouncy castle so that we didn’t have to make much of an effort putting together organised games. I did do a pass-the-parcel. I am always tempted to put nothing in the middle but a last scrunched up ball of paper. The metaphor of life as an onion that you peel away to find nothing inside, adapted for the under-tens. I feel it is never too early to teach them the essential futility of life.
We decided to keep it on a school class only basis, six is definitely an age when kids are beginning to get socially awkward. They will have to wait thirty-odd years and start growing nose hair to begin getting over that.
We also had cousin Zac to stay. Otto’s reverence for the coolness of “The Zac” was further reinforced by Zac being able to recite lines from the “Goblet of Fire”.
Check out the UK branch of the Baxters having a barbie in March. Eat your hearts out Aussies!
Zac and AJ
AJ stood the other day! I got very overexcited and showed all my colleagues at a conference the picture of her standing that Fo had sent me. “Look a picture of a bottom in pink tights! Wow!” she has got a splint for one of her legs to help her keep it straight and she can bear some weight on it. She has been on very cheerful form for a good while. No massive improvements. She is coming out with “Da Da Da” often and sometimes in my presence, so that’s talking in my book.
We are still in recovery from yesterday’s fund-raising endeavours. Admittedly in terms of effort expended it did fall a bit short of brother-in-law Andrew’s triathlons. This was a gentle stroll from one end of Winslow, our (small) local market town, to the other. And when we reached our final destination, our labours were rewarded by a vast array of cake. Now, those of you who know me well will know that I am not a big X-treme sports man but I will go a long way for cake.
This was a sponsored walk in aid of Duck Down’s, the North Bucks, DS support group. We are a breakaway splinter faction of the more established South Bucks group, along the lines of the Provisional IRA. I didn’t leverage the blog to drum up donations, which probably I should. I think we will be doing a few of these so I might do so in the future.
It really is a great little group. Being with a load of people who are in the same boat as you is, undoubtedly, a strong and bonding experience. And even AJ having Down’s plus a load of other things is by no means unique. Down’s does bring a whole load of complications with it and quite a few of the kids have difficulties ranging from poor eyesight to Autism. So it is quite warming to be with people who understand that in the great scheme of things Down’s really is not that much to worry about.
Poor AJ. She has Down’s, had open-heart surgery, survived leukaemia and chemo and is now dealing with brain damage. But it does seem particularly cruel of me to make her sit through a recording of Italy-Scotland. What an enormous load of poo! Scotland have pretended to be half-decent against the good teams and lost but playing the team they are supposed to beat shows how poor they really are… They lost! (that is Rugby by the way…)
AJ’s progress is still quite “two steps forwards, one step back”. But there is progress. Best of all her cuddling has returned. AJ, for obvious reasons, has always been behind on most developmental milestones but she has always had honed, advanced kissing and cuddling skills. She had the cuddle of a Gibbon baby and she’d wrap every limb tightly round you. But since the brain thing, she can’t really control her limbs so this was difficult for her. But over the last few days she has been able to cuddle again and it is such a wonderful feeling have her gripping you again.
She has had a good few days though she has got a funny thing going on with her balance. She gets very nervous about being off-balance and wails a bit when she goes into her pushchair. It is quite odd, the optimist in me feels that it might be that getting some her functions back could be as disorienting as losing them in the first place. So now that she can balance a bit sitting upright, it freaks her out to be lain back. But that is just a theory.
The neurologist is quite pleased with her overall progress and is increasingly confident that the steroids are doing the job. If this is the case, then it would follow that she has got some sort of inflammation. This is probably caused by an allergic reaction to something in the chemo. I am using quite a lot of vouching language – “If, probably, some sort, something” so you’ll understand that nothing is fully certain yet. We don’t even know to what extent the improvements that the steroids have engendered, will be permanent. She has had a relatively long course and we are reducing the dose so that she can come off them. She will then have a pause and another course, with various MRIs along the way. By then we should have a better picture of what is going on. Thankfully the neurologist is keen to avoid a brain biopsy, they would only do this if they were sure it was a virus and needed to find out exactly what it is. I, too, am keen to avoid the whole brain drilling thing. Yeuch!
Mum has always enjoyed sending and receiving inappropriate cards. I gave her a card with the the Playboy bunny logo on it for Mother’s Day, which she liked!
some pics of Mum and AJ on a recent sunny day. The iPad is definitely better for portrait photos than for long range ones.
This is a totally random football post, so don’t read it if you are not into football. But after my little football aside in yesterday’s post and watching Barcelona, I feel inspired.
If you have ever had an inkling of an affection for football, you have got to love Barcelona. They are just beating Bayer Leverkausen 6-0, playing absolutely sublime football. It is hard to understand how one team can fit Xavi, Iniesta, Fabregas, Messi + a striker onto the pitch. If any English team had any one of those players, they would basically feel they were sorted on the creativity side of things. Messi has just scored a fifth. I was going to wax lyrical awhile about Barcelona the team before I moved onto Messi. But… But… No one has ever scored 5 goals in a Champions League match. There is a series of players, more or less spanning a decade each since the 1950s – Di Stefano, Pele, Cruyff, Maradona, Zidane, Messi (is there someone missing between Maradona and Zidane?) who stand above other players. There is something really special about Messi, he scores masses of goals (he started this match 11 goals from scoring more Champions League goals than all other Barcelona combined, so is now 6 behind.) But essentially he is a team player, a roving midfielder. He runs all over the place to pick up the ball. Unlike so many players today, he doesn’t fling himself to the floor, writhing in agony when brushed. And he gets kicked around the place. There is no strut to him, when he scores he gives a little grin, maybe wags his fingers and gets a cuddle from everyone. And he is weeny, the reason he ended up in Barcelona was because his family in Argentina couldn’t afford the growth hormones that he needed to get him to the reduced height he has reached today, he is shorter than me! He is seven behind the all-time Barcelona scoring record and he is only twenty four.
So back to Barcelona, and on a related point, even the foreign players have been there for ever. In a world where teams like Manchester City or Chelsea can buy their way to the top, importing ready-made players from all corners, most Barcelona players have been at the club since they were kids and there is a whole generation of kids waiting to come through who play with the others. A youngster who made his first Champions League start this evening scored two goals. Pep Guardiola, the manager was a boot boy at the club, went on to captain the side to Champions League victory, coached the youth team and has won everything multiple times as manager of the senior side, he is younger than me! Players who left the club as kids clamour to come back and if they are good enough are brought back like Piqué and Fabregas. And most of them are Catalan.
And that is one of the best things about Barcelona, they are not Real Madrid and Messi is not Ronaldo. What I am about to say is very much coloured by the fact that I am an Atletico Madrid supporter. Real Madrid represent all that is wrong about modern football. For years now they have been buying up players from all over the place, hiring and firing managers and spending non-existent money. And Barcelona have shown them that there is another way of doing things.
Ronaldo is a strutting peacock, a very, very good strutting peacock admittedly. He was made to play for Real Madrid, there is a Spanish word soberbio that applies well to both of them, along the lines of arrogant. But however good he might be it makes me feel good that he will only ever be the second best player of his generation. A far nicer person gets top spot.
It ended up 7-1, which weirdly I think was the score between Real Madrid and Bayer Leverkausen in what was supposed to be one of the great European finals, in Glasgow… I stand corrected it was Eintracht Frankfurt and it was 7-3, but it was in Glasgow. Thank you Google.
We’re the happiest family in the world!
This is what Otto came out with the other day. He was looking a bit glum at tea and Fo tried to find out what was up. We’re both very conscious of things taking their toll on him. It is quite hard to get a five-year old to talk about his feelings but we try to let him know that can talk about anything. So Fo said things along the lines of “It is quite difficult with Ava-Jane being ill for so long. We’re all finding it tiring, you probably are too. Things aren’t as happy as they could be.”
“Oh no, it’s not difficult at all,” he says. “We’re the happiest family in the world!”
I think that we will need to keep an eye on him but he seems to be coping admirably. I worry, long term, about the first time someone says something horrid about AJ to him. I don’t think he really is conscious that anyone would see it as anything other than a massive blessing to have Ava-Jane as a sister. But someday someone is going to tell him “Your sister’s a …” (insert your own politically incorrect insult). It will hurt him but I hope it won’t make him look at her in a different way.
It is very hard to assess how AJ is coming along. She seems to improve in some ways but get worse in others. She has had a few slightly more grumpy days but that could be a side effect of the steroids. This is a longer course so these would, presumably be more acute. But overall she is definitely more chirpy. She is sitting up a little bit more. Now moves her right hand but doesn’t use it. And her legs are less stiff. She is also seeing more.
She got measured up with a splint to help with her legs today. Fo is quite keen to try to circumnavigate some of her disabilities. She can’t sign any more; most signs need two hands and she can’t see clearly. But she is making a greater variety of sounds than before so we might as well have a go at getting her talking. She can’t crawl as she can’t use her right hand but with a splint we could see if she could stand and eventually walk. Walking does feel a long way off. But as AJ gets her spirit back she is making more of a go at things. Bit of rolling over, trying to sit up. She was absolutely delighted the other day when she realised she could touch her toes again, she hadn’t done that in a while. She has always been a big one for tickling her own toes.
Just done me ironing in front of the football. Chelsea beat Birmingham… Wow! What has happened to Torres really is tragic. It is very sad to see such a good player, who I saw come through the youth ranks at Atletico Madrid. We would faithfully make it to the Vicente Calderon for 12 o’clock Sunday (not a time when anything should happen in Spain) matches in second division, he was the only thing worth watching about the team. He has won World and European cups, and then, all of sudden completely forgotten how to play football, very odd!
Apologies for football rant, not sure where that came from! Better stick to politics hey! Or… I have just taken delivery of The Game of Thrones DVD box set. And I have got the final two books coming next week. So I could be about to get very dull. Do stop me if I go off on one about the unjust rise of the perverse House of Lannister. Or the heroism of those who guard the wall and protect Westeros from the evils that lie beyond it in the frozen north. Ha! Ha!
A slightly random photo from the snow the other day, but have taken many recently and not sure if I had posted the snow bear.