AJ and I rolling around, blowing kisses at each other. I had been away for four days and had the day off, she was looking a bit peeky so we took the day off together. She loves a selfie. I recently posted a selfie on FB and lots of my Spanish “friends” (sí cabrones, si estaís leyendo esto, tu especialmente Eduardo Suarez, que malos sois) said I looked fat due to my multiple chins. I think I am trying to avoid this look in the pics above.
So it’s World Down’s Syndrome Day today and I do love the choice of date. For anyone who doesn’t get it, it is 21/3 to represent the trisomy on the twenty first chromosome. In fact only bettered, as a date, by May 4th being Star Wars Day. If you don’t get that, ask.
DS day is always a bit odd for us because while AJ has DS, that has seemed the least of her problems. There has always been something more immediate to deal with to really be able to feel that DS is what we most need to worry about. So for example, she has been making amazing progress educationally, her speech is coming on to the point that she has just started doing French! However, recently her shakes have the been the main worry. She’s got a couple of different shakes going on, probably some form of epilepsy. As ever, ups and down’s.
But a day like World Down’s Syndrome Day, is vital for raising awareness. Being part of this community and being AJ’s Dad makes you so aware that there is value in every human being.
A friend emailed me today to send AJ an extra big achuchón (cuddle) for making the world a much better place. I often say, that AJ isn’t going to be able to do a whole load of things, starting with curing cancer all the way down to being able to walk. However, (that’s my second “however” so far and I fear it may not be the last as I am feeling a little pedantic, as you might perceived from this parenthesised diversion) the trick is to focus on what she will be able to do.
She will be able to make anyone she meets smile and that is an achievement beyond the ability of most. I think there is an emotional wealth that we risk losing by not valuing the worth of AJ
and people like her. Hmmm, just rereading, “and people like her”… not quite right. No-one has a smile like hers, other people who have DS, have other talents and other smiles.
Oooh, sorry about that, I seem to be getting very earnest all of a sudden and if I let my emotions get away with me, I might stumble into a full on rant about our dear Chancellor taking aids away from the needy to foist tax breaks onto the undeserving.
So what do we value as a society? A smile or something more bankable? We seem to only be able to value something in monetary terms, so when some natural disaster strikes, we report on the $s the rescue will cost rather than the emotional damage. Is this good for us?
We become better, as a society, by being aware of people with DS and and trying to understand all the many differences that we have between ourselves, as human beings. It’s what we have in common that is interesting but we always seem to focus on what is different.
OK, then mini-rant: it is good for us, it is what makes us civilised, it is what we have hopefully arrived at as a species – the ability to recognise that we have a duty of care. Whether it is care for the likes of Ava-Jane or care for Syrian refugees fleeing the most atrocious existence, being the kind of society that can care for the weak, makes us better, as individuals.
Oh cripes, botherations, I am sounding worthy, while sounding like Boris Johnson all at the same time. What a bloody shambles the Tories eh!? Nothing warms the cockles of the heart of a proud Guardian reader than watching Tory internecine warfare. However (I told you there’d be another one), (always have to have a comma after a “however”) what’s this? David Cameron and George Osborne are the ones you’ve got to support? The guy who just resigned over a point of principle that seemed to be about taking a stand for the disadvantaged against the ravages of bum-faced Osborne, is the bad guy? Iain Duncan Smith is, after all, the nasty anti-European wanting to make us a tax haven for the 1%, cast free from any burdensome regulation that make corporations recognise anything beyond the need to feed their stock market valuation.
It does seem like I have gone off on a rant, so before I proceed, I should declare an interest. I am a dyed-in-the-blood Europhile, born and bred. Us Baxters traipsed off to Brussels in 1973 when my Dad got a job working for the EEC (precursor to the EU). I went to the European School. After University, I went to live in Spain for ten years, thanks the EU’s free movement of labour laws. I now work for a Spanish company. More Eurotrash than me, you could not be.
However (I’ll just leave that one hanging… oops), really, do we really want to go through the whole rigmarole of disentangling ourselves from Europe for so little gain? Is that really the most pressing problem that we are facing right now? Whether some faceless Eurocrat or someone from just down the road tells you what you can and can’t do? Because bureaucracy ain’t just going to disappear.
Let’s think about the seriously big things that we face, I am sure that we could all think of others but I’ll pick two: catastrophic climate change and international jihad against the west. These, I would suggest are biggies… and real (just in case you ask), sort of civilisation threatening kind of things. Neither are these are going to be materially solved by us spending valuable thinking time trying to work out whether we want to continue trading with the EU, whether “they” or “we” should be the ones who decide at what rate tampons should be taxed.
There was some ministerial Brexiteer on the radio the other day, saying that we need to be able to take decisions based on “our” “National Interest” and he cited, as an example, making sure that the City of London was not shackled by overregulation. Soooo, the interests of the City of London are our “National Interest”? Didn’t work out that well last time, did it? Are we sure about that?
And, in a vain attempt to try to tie the whole of this meandering blog post together, couldn’t we try to find all the things we have in common and focus on these? I know that anyone who has ever met Ava-Jane would agree that having her, someone who is a little different, as part of the community is good for everyone. And in the same vein, I think that it would be good for us to be part of various communities, even though we are a little different.
(Happy Birthday for tomorrow Otto. 10!)
Complete cheap shot below, but really, in a world where Donald Trump might be voted, democratically to lead the free world, let’s at least make sure we recognise the Ava-Jane’s and realise that something like her smile has an unquantifiable value. While someone like him, who is “worth” so much, is worth so little.