Perspiration and Inspiration - Thursday 4th July 2014

99% Perspiration and 1% Inspiration usually applies to genius but could apply to Evan's Big Journey.

It's not every week that we meet Prime Ministers or head to TV studios. Those are the 1% times but the other 99% is sheer hard work and perspiration - mostly on Ev's part. However, those other times do occur from time to time. Such was the case when we were asked recently if Ev would help out with the launch of the Yorkshire Young Achiever Awards. This would involve doing some TV and we had to negotiate with Ev who had declared, at the end of 2012, that he was now in retirement. We had to do a little bit of cajoling, and a bigger bit of bribing but we got him there. "There" being the ITV Calendar studios, along with presenter Duncan Wood (we also met an old friend - Tina Gelder who came to London with us), Peter McCormick from YYAA, Doroteo Ronda Perez and Dr Kate Granger. Doroteo was a recipient of a grant from the charity which does so much, is celebrating it's 21st year, and has raised nearly £1 million pounds in that time. Kate is a truly inspirational person, and I wouldn't be able to put in words here what she has achieved in very difficult circumstances. However, I would suggest that you spend a few minutes reading her blog - (http://drkategranger.wordpress.com/).

In the last couple of years we've been lucky that we have met some really interesting people - some higher profile than others, but many have touched our lives in different ways. We might switch on the TV and see a familiar face, but equally we might see someone on the school run who played a massive part in what has gone on in the last couple of years, but it was a real pleasure to be able to spend a few minutes in Kate's company. Totally different situation but some parallels - simply trying to get on with what challenges are there and a truly humble and, yes, inspirational person. We wish her all the best on her own journey.

As per usual, Ev was a star in front of the camera (as opposed to his bumbling, mumbling Dad but Duncan did a good job in the editing suite !). The results can be seen here (www.itv.com/news/calendar/update/2013-07-04/happy-birthday-yorkshire-young-achievers/)

...and so we headed home, Ev back in retirement (so he says - for now...) another step on the journey but a day filled more with inspiration than perspiration.

Carrying on, carrying on... Wednesday 3rd July, 2013

I was going to apologise for lack of recent blogging activity but sometimes there isn't one to write. That doesn't mean that there isn't anything happening - quite the opposite - but sometimes it feels right to not write one for a while and then have the chance to look back.

So what's happened over the last couple of months since the last update (Feb - when we went for a walk) ?

Well - lots of bits really, much in terms of basics. Ev's getting stronger, faster, more controlled and increasingly confident with each new step. He's done some independent swimming on his back (on its own this is a big thing for him... )

He's been on his first school trip on his own (more of an ordeal for Loup than Ev...)

There have also been some great improvements in the distance he can walk independently - even progressing to outdoors.

Next step is to do some work on stopping and turning round !!

I've missed stuff off - not intentionally, and will kick myself when I hit publish but I think the amount there is to potentially leave out shows how much there is to put in.

We went for a walk - Saturday 16th February

This isnt a blog about some big stuff, no announcement or anniversary - just some big small stuff :)

Saturday is usually reserved for "doing stuff", "catching up" and "sorting out". It usually starts with a mad-dash to get Evan to an early swim session which also acts as physio (and is having great results in terms of strength, tone and confidence) and then remains busy for the rest of the weekend. Not that this seems to be different from many, if not most, of our friends.

On the days that we dont venture out it's usually raining. Or snowing. However, this weekend there was a week off swimming and it wasn't raining - although I still had some errands to do and Loup said we should then take the opportunity to get Ev to do extra physio - but rather than do these tasks separately I asked Ev if he wanted to join me for a walk.

So we set off - with our list of stuff to do - Bakers, Butchers, Building Society and Cobblers.

I spend lots of time with Ev but contact can be very utilitarian - pushing him (or even walking with him) to school, helping him get changed or around the house, going to appointments, etc but this was different. Over the winter he has got stronger and we were able to walk with him having a "soft hand" (so he wasnt grabbing me like I was a bannister).

We actually had a really nice walk into town. We walked to the bakers, visited the butchers, popped into the branch and then collected some of his school shoes which had been in for repair. Along the way we saw loads of friends - also taking opportunity of the fine weather - as well as plenty of others who clearly recognised Ev and commented "doing well...".

As a reward we even popped into a local cafe for a sausage butty. As we sat there, Ev helping me with my share of the butty (one each next time!), he commented "this is nice" and "perhaps we can do this next week as well".

Yes, it was - and yes we can.

Sunday 27th January 2013 - Two years on.......

A couple of years ago, perhaps a little more, when we started looking at SDR I'll admit that I didnt fully know what to expect. It was all well and good using terms like "ground-breaking operation", "life changing" and "chance of a lifetime" but we didnt really, not deep down really, know what that meant. It was a journey we were starting and while we did so having looked into it in great detail, and having complete faith that we were doing the right thing, it still felt very much like taking the first few steps along a yellow brick road.

We became experts in terms we'd only just discovered and luckily we picked up plenty of people to travel with us. Some even leading the way, pointing out directions or looking after us when we needed it - sometimes in ways they didnt realise.

But then, from somewhere I cant remember where, I saw a couple of links on the internet. Here they are:
STL clip 1
STL clip 2
I watched them time and time again. Now absolutely sure, if such proof were needed, that we were doing the right thing.

It's now exactly two years on from the op and I dont really need to go into detail of what Evan's Big Journey has achieved. The pages of previous blogs have told the tale so far. And it is only "so far" but for each of the big things that has happened, an equally small thing has given us equal joy.

For every Prime Minister, Lord Mayor, Paralympian or TV celeb we have met there is another SDR family out there, a friend who did something daft or inspiring to raise some cash, a kind message from a friend in STL or a colleague I walk past at work who did something to help.

For every TV appearance there is someone beeping their horn as we do a walk to school on a dreary morning. For every newspaper article, there is a facebook message from someone we met along the way. For every fancy black tie do, there is someone who says Hi as we walk past, smiling at Ev's improvement.

For each of these things, there is a moment that proves we were right to dream, right to do what we needed to do, and right to look to change what might be. It is simply not possible to thank everyone who was a member of Evan's Big Journey - every week I see someone or recall something that i'd forgotten played a part. There are though, two people who I think deserve special mention - one is Dr Park who has assembled such a fantastic team in St Louis and who is slowly changing the world - one SDR kid at a time - and the other is Loup, whose patience, stubbornness and insistence that this would happen was the force that meant it did.

In fact, no, there is a third. Obviously. Evan. There are days when he cant be bothered. Days when he has had enough. Days when he is a typical 8 yr old boy. But there are plenty of days when he works so hard, puts up with so much and does that extra little bit that shows us he'll be ok. Plenty of days when he makes us smile and makes us proud.

For them, but also for everyone else, this is for you....
http://www.youtube.com/watch?v=EXYSL1zvBzo