Right now it feels like we are living through the worst of what has been a bad run.
AJ is at a very low ebb. She can move her right hand and right leg but for some reason doesn’t. She is very protective of her right hand and has it permanently curled up into a little fist. If you try to hold it she will move your hand away with her left hand. Her vision is also not working properly. You have to get close up to her before she really is aware of your presence. And she has changed in temperament, she wails in a way that she never has done before. As she has no ability to amuse herself, she gets bored very quickly if she is not getting any attention. She has started waking up in the middle of the night or early, early morning, which explains why this is the first post that I am writing in the morning – I was up at 4am, gave her milk, breakfast, cuddles until she went back to sleep, cleaned the kitchen, Otto and Fo still in bed, so why not write? We have been very lucky with both our kids and their sleeping patterns so this sleep deprivation is a novelty and about as welcome as a novelty tie for Xmas. She tends to slump most of the time as she has lost her sense of balance and can’t use her right limbs to help herself sit up and, of course, she can’t crawl. So she has the abilities and sleep pattern of a six-month old but the weight and consciousness of a two-year old, which is really hard for her, and for us.
It is very difficult to diagnose what is making AJ wail: pain, tiredness, frustration, boredom, a combination of all of these, who knows? All we know is that someone who has the natural disposition of a puppy on ecstasy suddenly finds it hard to smile. We are all slowly learning how to make her happy. Otto can still be guaranteed to raise a grin, she gets the giggles from tickles and goes mental in the bath. I think that she is also slowly learning how to cope. I don’t think that she has improved since we were discharged but she has had a go at kicking around with her right leg in the bath, to better splash Otto. She will let you hold both her hands for “Row the Boat” and is becoming used to feeling around her tray for stray Quavers or Twiglets.
I suppose this should be something to hold on to. That, if she doesn’t get any worse, she will learn to adapt and her system will probably also adapt to compensate. But as we still do not know what is wrong with her so we don’t know if it will get better or worse… or stay the same. We do not know if it is something permanent or transitory. This is what is so difficult to deal with… the future. Should we be preparing ourselves for a lifetime of caring for someone with serious incapacities or weathering a storm that will blow over? We have already had to discuss rethinking her schooling, she was going to go back to nursery around Easter with a hope that she could start pre-school in September. We have always hope that she could do at least some time in mainstream school and not need to spend too much time in special school, which would be standard for a reasonably together kid with Down’s. This new thing will set her back considerably, especially as it has seemed to have hot her confidence so hard.
Oooh, it would appear that early morning blogging is fairly gloomy. It would be a lie to place all the blame for my gloominess at the feet of the clock. We did have a great Xmas and it was so much better being at home than being at hospital. The efforts everyone goes to to make it fun for the kids is wonderful, but I was finding it increasingly difficult to summon Christmas good cheer and had to bite my tongue on more than one occasion when someone wished me a Happy Christmas.
All Fo’s family came for a great feed. AJ is undoubtedly stimulated by having people around and her six year old cousin, Eloise, patiently fed her her breakfast Boxing Day morning. We had my sister and her family for a couple of days to keep us all company. We have eaten, drunk and been merry as much as we can. We are feeling a long way from my brother and his family in Australia. We had a visit from Josh and his mum earlier this month and it meant the world to us to see them. Josh is the eldest of the cousins and is revered by Otto so it was awesome to see them again and for Josh to be able to hold AJ. I will post the photos below as I am massively proud of what a kind and handsome young man he is, plus you can see his ear ring, good to get that out on the World Wide Web (yes, I am so immature that I still like winding up my big bro even if only vicariously these days!)
Ah well, off to the pub later, so might update at around midnight with alcohol-induced good cheer, that is what it is all about right? My detox will kick in soon! Have started with the question of my reading matter. After six months of reading my fantasy saga “A Song of Ice and Fire” I have decided to cleanse myself for the new year and requested some weighty tomes for Xmas. I have duly received the latest offerings from Norman Davies, Steven Pinker and John Julius Norwich, which should keep me quiet for a while! Though I might tumble of the wagon come February and sneak back George RR Martin for the final instalment for more swords and sorcery.