Friday, 23 March 2012

SDR party - 23rd March 2012

Since we got back from STL, everything has been about the future. Ev's future and our future and, although we still have memory items everywhere, (as I sit here in my Cardinal's t-shirt, having opened a beer earlier with my arch bottle opener and with the 3 foot picture of the arch in the background) we had the chance to go "back" as it was the "SDR party" last weekend.

We missed last year's party - which is a get together of "SDR families" - as we were in STL at the time, but were able to attend this year. To be honest, it had sneaked up on us - things have been so busy at home, school and work that we didn't have much chance to let ourselves get excited. We knew for sure that Ben and his family were going but werent so sure about the others as we hadn't had chance to try and catch up. 

The first family that we met were the Wardleworths who we bumped into in a service station half way down the M1. As Loup said at the time, it was amazing that we had only really spent a week or so in each others company more than a year ago and here we were, as if we'd known each other for years and not seen each other since last year. That's the thing - such a common bond with everyone we met. 

On arrival at the hotel we were staying at, amazingly, we found that Jack - another STL friend - was in the room next door! 

Quick change and off to the party venue (10 min drive) where Ev wanted to walk in with his crutches. Ben and his family were there and as soon as Ev saw Ben, his competitive streak kicked in and he walked the last few steps into the hotel independently. Ben's own amazing journey has been tracked by Calendar (local news programme) and they have done a number of great pieces and they were there to provide an update, tied into the party. Calendar article. As well as Ben, Ev is on there (spot his feet at 01:09) and the rest of us make (thankfully, in my case) very brief appearances... 

I hadnt really thought about how the party would be (it was, unsurprisingly, emotionally charged) - and steadily more families joined the throng - some we recognised from Facebook, and it seemed weird in that we knew who they were but didnt know them. As we did more "celeb spotting" the real star of the show entered the room  - Dr TS Park.  We had chance for a very quick chat as he was whisked into the party room, and as we followed we also got chance to meet one of the physio's from STL - Mike Kenyon aka "Mad Mike" but he could quite easily by "Awesome Mike", "Genius Mike" or perhaps just "Ev's Mike". 

Then, our collection of friends from STL was complete as we spotted the Foxes and then also Jack. It was so good to catch up with them all and to see, within a 20 yard radius, all of our STL buddies, that we spent all of the time catching up and didnt have time to do much mingling with other families. Hopefully next time we will get more chance to speak to other families who we have only ever met online.

Unfortunately, Ev had had such a busy week that he was really "tired and emotional" by 10pm. So we had to head back. It was an awesome event - and we were a little sad that we hadn't had chance to join in more.  Luckily, but not unexpectedly, someone put together a video (thanks to Phil Putnam Spencer) SDR Party 2012 video - so we will always be able to go back again. 

We were lucky to get the chance to go to STL, lucky to meet such wonderful people, lucky that Ev has had this wonderful opportunity and we were lucky to get chance to be in that room. The future's the most important thing, but sometimes the past is pretty good as well...

Sunday, 11 March 2012

Feeling philosophical - March 11th, 2012

I'm going to start with some philosophy - but I must admit I learnt it from "Horrible Histories"...
There is an ancient greek philisophical problem known as "Achilles and the Tortoise". In this, the author - Zeno - talks of a race where Achilles challenges the Tortoise and asks how much start he needs, and the tortoise says that it doesn't matter as he will win anyway, as long as he has some start. When asked why, the tortoise explains that if they set off and the tortoise has, say, 10 metres start. By the time that Achilles reaches where the tortoise started from, the tortoise will have moved on - even if just a small distance. Then, by the time that Achilles has caught up on this, the tortoise will have moved on again. etc, etc, etc.... So, Achilles will never catch the tortoise up.

Of course, this is clearly not true - although the more you think about it, the more you convince yourself that it somehow seems true - and, indeed, this is how it often seems for Evan. Yes, there are lots of "facebook moments" where we are so proud, but there are equally times when there are tears, lack of motivation, mo-jo is no-more and the "get up and go" has got up and gone (and sometimes Evan feels the same :)

A few weeks ago we decided to take a break from physio for a little while - and we also went away to Centreparcs (for my birthday "celebrations"). As we were rarely in a rush (which is far from being the case day-to-day) we had the chance to let Evan take a little time getting around. So, he gave himself the challenge of beating his "independent steps" record. Which stood at around 200. He well and truly beat it and achieved 500 - and if that wasn't enough, he more than doubled that a couple of days later - and managed 1,140.

He was so chuffed with himself - and so, with this new fire in his belly, he returned to school after half-term. He has some new challenges now and this weekend has seen a couple of really fantastic developments.
Yesterday, as a result of some one-to-one swimming lessons, he achieved his 5 meters badge - which requires him to do this on his front and his back. This really helps with his flexibility and confidence (although it hasnt done much for Loup's saturday morning lie-in as the lesson starts at 8:15am).

Then, as part of another challenge (of which there will be more in due course...) he attempted to walk from home to school, using just his sticks. With it being a nice morning, he set off with Mum, Sister and best friend in tow. It's 700m (Ev's walk to school route) and is a ten minute walk for us usually, but this was a lot of effort for Ev - but he did it, in 1 hour 8 minutes. At the end, he was tired but so proud of himself. Walking to school is such a simple thing for kids to do, but is something that we once wondered if Evan would ever achieve. Well, he has - another one off the list - and the fact that school was closed and he got to come back home to a well earned slice of "sticky toffee fudge slice" and a session on the wii made it even more special for him. I'm sure he'll be looking at doing quicker than an hour next time.

Yes, life goes fast, but Evan keeps catching up.