So tomorrow, March 21st, is World Down Syndrome Day. As I have remarked on Facebook, it has taken me five and a half years of involvement in the DS community to work out the significance of this date. 21/3, represents the trisomy of the twenty-first chromosome. I would say “duh” but that is probably politically incorrect, especially in this context.
So I have been in touch with lots of DS-related people including the DS blogging community which is an amazing world once you tap into it but one which I had been basically oblivious of. And given that I have been blogging about a person with Down’s Syndrome for nigh on four years now, that seems surprising.
We’ve been members of our local DS group since AJ was weeny, the excellent Downs Ducks (the duck being the symbol of Buckinghamshire). When Otto went to one of his fist Downs Ducks meetings he reported back that “Thomas played with me and he is six and I haven’t even got Down’s Syndrome.” I always thought that this comment showed that it could be considered cool to have DS. He once also said to a lady who was cooing over AJ in a supermarket queue “This is Ava-Jane, she’s my sister, she’s got Down Syndrome, she’s a mutant.” He meant that this was a massively cool thing to be, I mean have seen the X-Men movies? They’re mutants! Ava-Jane and Huge Action as Wolverine are basically one and the same.
Then events somewhat conspired and we took our eyes off the DS ball. AJ had her first heart operation when she was four months old and we had to get all genned up on hearts. She was diagnosed with leukaemia the day after her second birthday, which meant a year of hospitalisation and dealing with a neutropenic child who could contract a bug from the slightest infection. The week after she was discharged, declared cancer free, she was hit with a massive stroke-like thing, probably as a result of an allergy to the chemotherapy. This then led to months of head scratching from an array of brain experts of that most learned city of the dreaming spires. We took things into our own hands and headed off for a summer in Budapest to see if some Eastern European therapy might not do the trick and we followed this up by hiring Boro our Hungarian/Romanian angel/physiotherapist.
Oh, yes, I nearly forgot! She had another full open-heart surgery session not a year ago. It’s just that she was in and out of the whole ordeal so quickly it’s easy to forget that it happened at all.
So we have been busy and we, and by we here, I do mean especially Fo, have not shirked in focussing on AJ’s needs. But honestly not much of the above has been all that much related to Down Syndrome per se, other than the fact that it is probably the underlying cause of a lot of it.
Ava-Jane is Ava-Jane and while I would happily live without the heart operations, the leukaemia and definitely the brain damage, the DS is somehow different. It is such an inherent part of who she is that I can’t imagine her without it and to the hypothetical question “Do you wish there were a cure for Down Syndrome?” I would sincerely say “No”; the world would be a poorer place without the likes of Ava-Jane. But there again, there is no one like Ava-Jane.
However, as AJ grows older and recovers from her brain damage, her DS is becoming and will become increasingly important. On the discipline front, she has had an incredibly easy ride. We are very much on Wayne and Waynetta/Laissez faire end of the discipline spectrum as anyone who knows Otto will attest but AJ’s discipline regime has been even more non-existent. As the main focus of all the adults around her has been essentially keeping her alive, we haven’t really paid much attention to things like table manners or the particularities of social etiquette. That said, she does put her hand over her mouth if she coughs or burps, which is massively gorgeous, thanks to the strictures of her grandmother.
…but now she’s nearly six, feeling a whole lot better, acquiring all sorts of speech, the better to boss us with and on the cusp of being able to propel herself again… It’s like some sort of dormant Godzilla recuperating functions and preparing to terrorise humanity.
Well OK, that it somewhat overblown but the point being that AJ’s back in the game and we’ll need to work out where her limitations are related to her brain damage and where they are more on the DS side of things. Her legs are the perfect example of this. Her right leg appears to be the good one as it is the one that can bear her weight but that is only because it is spastic due to her brain damage. It’s her left leg that she can actually control but that is very weak from DS low muscle tone. She does befuddle the pharmaceutical community, trying to find a medicine that will loosen her right leg without making all her limbs go even floppier.
I am going to propose this blog post as a guest post for the wonderful Downs Side Up Blog so if people are reading this who have not read my blog, a disclaimer: the above might sound grim, but have a look at the grins of AJ in the amateurishly photo-shopped poster. That’s her over the years, those are not just the odd photos with a grin that I managed to find. She grins, giggles, chuckles and smiles whatever the situation. She can captivate people in the most uncanny way. She can’t talk properly, can’t stand, can’t even sit up very well but she can emote like no one else alive. She connects with anyone and everyone. So for all the c**p that we have been through, we are an incredibly happy family and delighted to have our little Ava-Jane, the little squidgy delight who happens to have Down’s Syndrome.
I just had to insert these photos of AJ getting a story from Otto and me and AJ flat out with the flu this week.
Misliterature 