Monday, 11 July 2011

A proper update ...

It doesn't seem like two-and-a-half weeks since I posted an update on the eve of Adam's sports day. As it turned out the weather held, the sun shone, and a good time was had by all. It didn't escape me that I was witnessing something that I never thought I'd witness again. Not that school sports day has ever been at the forefront of my mind over these past two years, but as I watched Adam joining in with the all the other children it was impossible not to feel a bit emotional at the sight, as unremarkable as it was by any normal measure.

I think Adam has surprised everybody, ourselves included, with how well he has settled back into school. I could use any number of superlatives to describe how fantastic the school have been; the teachers, the support staff, the children, everybody. What was intended to be an hour during the afternoon almost immediately became the whole afternoon, and that in turn has now become most of the day. We settled on a routine, agreed with Adam, that he would go into school during first playtime (starts at 10:30) on Monday, Tuesday, Thursday and Friday, and after lunch on Wednesday. All subject to last minute changes and short notice cancellations; hospital visits, and his general wellbeing, must take priority of course. Despite a pretty intensive early morning schedule in terms of food and supplementation, we've still found it relatively painless getting him to school at 10:30; and when necessary because of end-of-term school trips, even earlier still. In part it's a result of us getting organised, but it's also down to Adam's cooperation. And that's entirely down to the fact that he wants to go to school. He likes going to school.

One of the most surprising aspects has been Adam's level of fitness. Each time his school day has been extended, or he's gone on an outing we've expected him to come home exhausted. And yet it's not been like that at all. Sure he has spells where he gets tired and needs a rest, but he's not superhuman! He's been through more in the past two years than most people will go through in their entire lives, we'd be insane to think it's not going to leave some lasting adverse effects. There have been occasions where someone has said to us 'I think he's a bit tired', but actually on the whole that's just Adam. If he needs a few minutes time-out he'll have one, and then he's ready to go again. He also has a certain demeanour about him when he watches television, one that lulls those who haven't been forewarned into thinking he's ready to fall asleep at any moment. In reality he just gets 'in the zone'.

In short he's had a pretty awesome last half-term including; sports day, a trip to Epsom College to see a performance of Bugsy Malone (after which he came home and watched the film on DVD), his school leavers party, and a year group day out at Chessington World of Adventures. In fact conspiracy theorists might speculate that he's deliberately gatecrashed the end of the school year just in time to enjoy all the best bits. And he's still got his leavers assembly to come. Now that will be emotional. Adam is most definitely looking forward to it given that he comes home almost every day and tells us he's done this or that in practise today. Two years ago when Jessica was doing her leaver's assembly Alison and Adam were in St George's Hospital. We knew Adam had cancer by that time, but we didn't know exactly what type, or how bad it was. I went to the assembly, along with both sets of grandparents - the best possible support for Jessica given her Mum's absence and brother's serious illness. I recorded the whole performance on video and took it back to the hospital. Just watching his reception class making their entrance and walking past the camera was enough to set Alison off. What tipped me over the edge was when this weak little voice belonging to our little boy lying prone in his hospital bed began quietly singing along to some of the songs. Alison looked one way towards to door, and I looked the other towards the window; neither wanted Adam to see us at that moment.

At the end of June I took Adam and Jess to the Post Pals summer party. The pair of them spent the entire afternoon alternating between the inflatable slide and bouncy castle, breaking only for the raffle to be held. As Adam picked out the second winning ticket I might have guessed what was about to happen ... sure enough it was one of his own numbers! Justice was almost done when he selected his prize from the table, and came back proudly holding a box of three black-and-white miniature footballs. No disrespect to whoever kindly donated the said item, but I felt compelled to tell Adam that if he'd had the benefit of being able to read he might have made a different selection. For the soap-on-a-rope he was holding so proudly in his hand at that moment would not have gone down quite so well when he actually got it home and opened it. He exchanged it for playing cards and dominoes.

We've also been going down to the caravan at weekends whenever Jake's sporting schedule has permitted. We recently bought Adam a dry suit, specially designed for children with hickman lines, to allow them to be fully immersed in water. Swimming, or at least being in water (as he has never been able to swim) is the thing that Adam has missed most. One of my early posts on here described Adam watching his sister swimming through the window of our local leisure centre and lamenting the fact that he couldn't. We kind of half promised him we'd buy him a suit so he didn't have to miss out this year, and he was very quick to remind us of this whenever we went near a swimming pool, or the sea. So now we've done it, and he's been in the pool a couple of times. You won't be too shocked to hear he's loved every minute of it. The only downside, and one that has meant we've had to curtail his long-standing desire, and new found ability, to swim, is that it aggravates his skin. Skin that has already been adversely affected by the retinoic acid he's taking. The dry suit itself does exactly what it's supposed to, although I can't pretend it's the easiest thing to put on and take off. As an added bonus, by leaving just enough trapped air inside it, the suit also acts as a flotation device, and it's enabled Adam to play in the pool with his brother and sister even though he's completely out of his depth and can't actually swim.

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And there you have it, a 'proper' update. The update I started out meaning to write last time, but didn't quite manage to end up writing.

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