Friday, 22 April 2011

A Good Friday - Friday 22nd April

Apologies for the lack of blog last week - as it was Ev's birthday last week there was only one thing the blog could be about ~ reflecting on Day 1 (2004) ~ but it was a difficult one, so it's written and filed away, but not published. Maybe one day...

So, that gives us a couple of weeks to catch up on. A couple of days after the last blog, Ev was a "page boy" in the school's version of the Royal Wedding - and walked "down the aisle" - he has a walking stick at school that he can use to balance him on one side, while holding hands with someone else on the other. I only managed to see a video clip, as I was at work (no bank holiday for this version....) but he looked really steady. Many people have since commented how different he looks. Which is partly one of the "problems" that we have - things are happening steadily but gradually (even though it is only 7 weeks today since we got back) and sometimes it is difficult to see the exact scale of progress. So we sometimes need others to tell us how things look to have improved.

Then school broke up for Easter and we have been trying to balance the relaxation that he needs with keeping up with his exercises, and there is still a lot of flying between appointments - which we are doing our best to keep disruption to a minimum but can be "fun" to manage on occasion. Especially when we are triple-booked - so thanks to the temporary baby-sitters who keep coming to our assistance.

Today was actually the first day in a while which we have been able to do something all together and we took a little walk "down the lane"

We are lucky enough to be in the middle of some wonderful countryside and we haven't taken the time enough recently to wander through it. In parts we got Ev out of his chair and he walked, holding our hands, for a good few hundred yards. Every time we said that he could take a rest he wanted to keep going and going. A little slither of his spirit shows through at times like that, but it's that which makes us very proud and hopeful that he will drive himself forward in the weeks, months and years to come. It even seemed easier to get Ev out of his chair and let him look over a gate and into a meadow. It's a bit difficult to explain, but the operation, in fact the whole experience, has opened our horizons as well as Evan's.

So, all Good !

Tuesday, 12 April 2011

Top of a big hill - Tuesday 12th April

Each year, Maya's school organise walks up each of the 3peaks-  individually, and then collectively. So, at about 10:45 on Saturday I found myself towards the top of Phen-Y-Ghent, ascending the steep side. The last time I did this, it was as part of "Dynamo Joe's" 3 peaks walk. Which, personally, was one of the highlights of the fundraising - equal in both challenge and reward. I'll admit that i'm not a great one for heights (in fact, im pretty terrible...) but I did it. Last time I was able to just chant "do it for Evan..." over and over again to get me through it, but that obviously didn't apply this time so I had to settle for not being embarrassed by my 8year old little girl.

To get through it, I just concentrated on the next (steep) step - not worrying about what was below, and not thinking about what lay ahead. Which is pretty much what we have had to do over the last week or so. Ev has been very tired (not surprising - he really hasn't had a break since Christmas holidays, and has been through so much) and had struggled for a little bit of motivation, and a couple of PT sessions had been hard work. Sometimes he has looked grey, even transparent in a way.

However, I'm pleased to report that he has picked himself up and last Friday's PT session was a good one and he now has a new "party trick". From being sat on a stool, he can do a "sit-to-stand" without any support, can then balance for 10 seconds, then slowly sit himself back down. Which is awesome, and he still gets that twinkle in his eye when he knows that he is doing something amazing.

He breaks up for Easter on Thursday and we hope he can use the time to re-charge his batteries, as well as have some good days out. During the holidays he will be having his birthday (this Saturday) and his party the 8 days later - where we hope to catch up with some friends that we haven't seen since STL. Will be great to catch up with them all. We are also hoping that he can go from his "double splint" to the "single" version - but a lot of this depends on Ev himself. He has the strength now, but it is the psychological aspect - he has had splints for so many years now and he is clearly nervous about losing this support through the day.

We don't doubt he will be fine though - he's already climbed bigger hills than I ever could...

Saturday, 2 April 2011

Mothers Day - Sunday 3rd April

If you're reading this then it's fair to assume that (a) you helped with the fundraising and/or (b) you know Evan and/or (c) you know of Evan. So we thought it only fair to let you know of something which we are proud of being able to do, although at the same time not really being something which we wanted to shout about.

When we started fundraising back in July last year, we always said that if we were lucky enough to make more than we needed then we would help other families in similar situations. Of course, you will know that we were so incredibly lucky.

You might think that giving money away is pretty easy. Strangely, it isn't.

For every person, family or cause that you are able to help, there are 10, no 20, no probably 50, even more, that you cannot help. So in many respects it is actually a difficult thing to do as it draws attention to the vast amount of good causes out there - most of which aren't getting the funding and support that they genuinely need. We are so, so, sorry for the ones that we aren't able to help. However, what we would like to say, and what we would like to think, is that we have been able to pass on a little bit of the luck that we have had. Not enough, but hopefully a little bit closer to something like enough. So, on behalf of the causes that we have chosen, we would like to say thank-you.

We, and now they, couldn't have done this without you.

As for Evan, well - he goes from strength to strength. When he first stepped on the treadmill in STL, with Erica (from America) and (Mad) Mike he was doing a couple of minutes at 0.2 mph. A month later, just before we left, he was doing about 15/16 minutes at 0.6mph. On Wednesday this week, with Steve (no nickname yet) he did 21 minutes at 1.2mph.

Enough to make any Mother's day !