Paralympic Flame Ambassador - Monday 23rd July

Turn back a few weeks.

I’m stood at the back of the school hall, it’s the end of the assembly that followed Evan’s Walk to School, and I’m stood next to Amy from the attendant entourage who turns to me and says “could you do more of this ?”. Full of adrenalin and pride, with that feeling of being able to do anything under the warm glow of Evan’s Big Journey, “of course”, I say.

Thinking nothing more of it, and once all of the “Walk to School” excitement calms down, life goes on. Time to pick Maya up from dancing, I check my emails while waiting.

One from Amazon, one from Vistaprint, one for Mum about her caravan, another one from Vistaprint and one asking if Ev will be Yorkshire & Humberside Flame Ambassador for the Paralympics, a couple of updates from twitter, one about an online survey......

Rewind.

One asking if Ev will be Yorkshire & Humberside Flame Ambassador for the Paralympics..

“...this summer we will be welcoming the Paralympic flame to Yorkshire and we would like to ask Evan to be the Yorkshire representative who brings the torch back to the county.

We were all hugely inspired by him and feel that he is the perfect person to ‘do the honour’. We also sent the story to LOCOG (London Organising Committee of the Olympic Games) who thought the story was fantastic and are also in agreement that Evan would be the ideal representative to bring the flame to Yorkshire.”

Gulp....

Just couldn’t stop smiling - no grinning, from ear to ear - and couldn’t wait to get back to family to share the news. Amazing. So we replied quickly - yes, of course. Whatever it entailed. Yes - of course.

As more details came through, it got more exciting and more real.

“ the part we would like Evan to be involved in is attending the flame splitting ceremony in Trafalgar Square, London on Friday 24th August ”

What on earth might this mean.... More TV for sure, crowds, Seb Coe ? Boris Johnson ? David Cameron ? No idea - but it seems big. No..... BIG. Very BIG. Scary BIG. However, literally, the Chance of a Lifetime.

Then a really tiny setback - we can’t tell anyone until it’s announced officially.

That was 7 weeks ago - and since then the crescendo which surrounds the Olympics has grown and grown. We attended the torch relay and couldn't get within 500 yards of Skipton High St which was 10 deep. The crowds were immense, and we couldn't help wondering what Trafalgar Square would be like.....

In that 7 weeks we have had to keep it under our hat but now, and no apologies for the mixing of metaphors, the cat is out of the bag.

It gave me time to think - this couldn't have happened without Miss Court getting the school involved with the Walk to School project;
 - that couldn't have happened unless Ev had been to STL;
 - that couldn't have happened unless everyone we knew - all our friends, family, colleagues and complete strangers - pitched in and got us there;
 - that couldn't have happened unless Loup pushed for us to investigate SDR;
 - that couldn't have happened unless we found out about it;
 - that couldn't have happened unless the wonderful Dr Park was doing it in the first place.
 - all of that couldn't have happened unless we had been lucky enough to have Evan survive in the first place.

SDR Changes Lives.http://www.support4sdr.org

What next ?

Well, the timing couldn't be better - with Evan having wowed the cream of Yorkshire’s journalists at the awards on Wednesday (see previous post) his fame now precedes him (check out Twitter, for example) and when Amy was speaking to various people they already knew who he was. As I post this, we have “press booked” for this morning and are heading to Leeds this afternoon for a couple of TV recordings. Keep an eye on Calendar and Look North....

More blog updates later on that.

Then we have to start thinking about the trip itself and preparing for what that actually entails. I’m sure Amy, Tom and the team will continue to look after us as superbly as they have already. At the minute we are excited, nervous and simply can't wait...

Return of the (lovely) beast... Wednesday 18th July

There is a distinct difference (for us) between "Evan's Big Journey" and "Evan's journey".

"Evan's journey" is the one he takes every day. Every little step - the physio, the ever increasing bits of independent walking, the walk to school - but also the frustrations that we don't get chance to do more, that he isn't progressing as much as he might and the worries that we might tire him out too much and for what the future holds for him.

"Evan's Big Journey" is the behemoth, the giant, the beast that we created to help us get Evan to St Louis, to change his life and to change ours. It's a nice beast - one we are massively proud of creating,one that changed our lives, and, in as many ways, changed the lives of those around us. One that we owe so much to. However, on the whole these days, its appearances are less frequent and we easily forget how exhilarating and tiring those can be.

It reappeared with great force with the whole "walk to school" thing and we thought that would be that. Until, that is, Ev returned from school with a note in his school bag;

"invite / o2 / Evan / award / Leeds ballet / July / Mark / phone number....". 

That's all we had to go from... So, I made the call and spoke to Mark - who happened to be producing the O2 Yorkshire Media Awards at the Leeds Ballet Centre, and they wanted Evan to present an award. We want to give Evan every opportunity that comes along - but I wasn't sure what to do with this one. Did they know that Ev was an 8 year old boy... after all, if you google the name there are two, and one is a well renowned Australian journalist (http://en.wikipedia.org/wiki/Evan_Whitton). But no, it was our version - Mark was a great guy and we spoke for a few minutes about what Evan could/nt do (and that he might get nervous) and we kept in touch. 

Things got closer and, keeping things under wraps, we got increasingly excited as the event came upon us and we got a preview of the script, suggested questions, etc. I had to arrange a "night off" a "residential work thing" I was doing but the team were great in acknowledging it was such a great experience - and how right they were....

We arrived at Leeds Ballet Centre and were ushered to the "green room" (yes, I did just type that....) and over the period of the next couple of hours were introduced to, and had the chance to chat to, some actors, a top British dress designer and a boxing champ along with some lovely "back stage people" (too many names to remember - but they were all so helpful).

We were then taken backstage, while out front they were watching the video of Evan's walk to school, and then he was up (with his glamorous assistant, Mum...). Ushered onto the stage, he had decided to go for his crutches as he feels a bit safer with them. 

The reaction was amazing. A crowd of practically complete strangers giving our little boy a standing ovation. On their feet, cheering and clapping.

Amazing. 

Humbling.....

The presenter (Emma) asked Evan a couple of questions and then asked him to name the winner (which we'd had a sneaky look at beforehand so he could practice). All he had to do was to say the name. No problem. Simply say the name. 

However, he took a step forward and said, "I can now reveal that the winner is" <pause> "Paul Walker". 

The reaction was amazing - such a mixed reaction, people looked like they were crying, laughing and perhaps both. The following is a clip of the crowd reaction as he came off. 

We managed to hang around for a little while and watched a couple more awards until Ev got tired and then we headed home. It had been a long day...

When I got back to the hotel ("residential work thing", remember...) I checked my phone - seeing that Evan's pic had been tweeted - by a real, proper, tv celeb. Then, cue the usual flurry over the next day or so of further twitter activity, emails, photo uploads, facebook, etc.

"Evan's Big Journey" is a modern day beast, a multi-online-faced creature, but an amazing and benevolent beast. It took us to wonderful places, and continues to do so, we're very lucky....

Carrying on... & Camping. Sunday 27th May

Carrying on....

Since the "televised" walk to school, Ev has completed a couple morewalks to school. There have been no cameras, no radio, no press, no paparrazzi and not even any Olympic bound paralympians waiting for him. Yet, they have been as important and one thing has been the same, the good wishes from passers by and those who pass us on their own school run. And Ev, he's still been there battling away - as it is a battle for him and our job is simply to walk alongside and to cajole, motivate and try to inspire Ev to make it there (as well as arrange people who will very kindly take Sam and Maya to school for us - it's no fun for them taking an hour to get to school). The walks haven't been easy for him, and one a week is still about the most he can do. However, he's getting there and it's having a great impact on his walking in general.

and camping...

As I write this now, I'm sat, fairly tired, slightly sunburnt, but having had a great weekend away with the Yummy Mummies and Desperadoes (aka a number of close friends who forged an even greater friendship around the fundraising we did). My reticence at wanting to go camping is well documented across that group of friends and while there are a couple of reasons for that, the main one for me is it being slightly more difficult to do camping with Ev and how easy/difficult it is to get around. Now, for Loup, that's more of a reason to do it. So do it we did.

We've been lucky with the weather and that has really helped - we were also really lucky that we had a great location and so many people to help out. However, a couple of things really stand out and show Ev's challenges but also how lucky we are with who we have around us.

On Saturday afternoon we had a massive game of rounders and split into two teams. Loup joined in with Ev - which took the form of carrying him round from base-to-base, which was no mean feat in the weather, but as he stood to face his first ball all of the kids shouted, unprompted, "come on, Ev!!". Afterwards, in the glow of joining in (and Ev goes one of two ways when faced with joining in - all-in or all-out), Ev asked if he could have a go in the goals. "ok,...." I said, and even Loup was a little bit nervous of this, but there was little need to worry.

The kids split into two teams and one them shouted, "ok, Ev's in the goals - you can still score but dont shoot hard.". I was still a bit apprehensive but it was amazing - having watched a day full of 5 - 9 year olds and associated argy-bargy - the ensuing, and again umprompted, tenderness was really heart-warming. Ev saved a couple, missed a couple but really enjoyed it and then one of the kids from another camp who had joined in didnt realise and shot a bit too hard. Ev saved it, but took one to the stomach.

Tears.

Not a problem. Kids play football, kids get hurt, kids have a great time.....

Just another school run...? Wednesday 2nd May

Even on a "normal" day (if there is such a thing?) I would describe the school run as "hectic". How wrong I've been.....

Today started off as per usual for a Wednesday - Breakfast (Crumpets for Maya, Poached eggs for Ev and Boiled eggs for Sam today) and Grandma Skipton arrived, but then the TV crews and Radio Leeds arrived as well (and I was still in my PJ's). Not standard that, not even for a Wednesday.

Evan's school had been taking part in an Olympic related event at school (http://www.thetelegraphandargus.co.uk/news/9676382.Silsden_boy_Evan___s_pledging_to_walk) and as part of this he has set himself the target of walking to school to earn his school some miles/points. He has had a couple of practise runs previously (see previous blogs for detail) and today was the day that was chosen for his first day to walk to school.

This had all been co-ordinated with and by Evan's teaching assistant (Mrs Court) who saw his participation in this as being something to really aim for. We knew there was going to be some press coverage, although we thought it might be a bit of local press and maybe a camera or two - perhaps even a TV camera. Someone asked us how Ev would be in front of the cameras - we knew he'd be fine (in fact, he was a little bit envious of his SDR buddy Ben, if truth be told...) - it was me and Loup that were worried.

Loup did a piece (Live!) on Radio Leeds (http://www.bbc.co.uk/radio/player/p00r2129?lang=en listen from 1:16:57) which we listened to in the kitchen, huddled round the radio, and then we set off just after 8 as we knew it would take him about an hour, every step followed by two tv cameras.

Evocative of the fundraising, people waved from windows (they know who they are :) ), cars stopped and people shouted good luck. He was actually going quicker than expected so he had a sit down and an interview. As you do... Then we progressed up Elliott St and we were met with a wall of sound - kids, teachers and parents from Aire View all cheering him along. Probably not the best thing to say as I write the blog, but there are no words to describe it.... 

He was now on the last leg, and as he rounded the corner we could see Hannah Cockcroft - local paralympian (and world champion and world record holder as well http://news.bbc.co.uk/sport1/hi/other_sports/disability_sport/8753444.stm)- who was meeting him as part of this. 

Radio Leeds also did an interview with Hannah. 

http://www.bbc.co.uk/radio/player/p00r2129?lang=en 2:24.14 

They had a quick chat and he was nearly there. This time, his school friends lined the way and, pretty bizarrely at the end was a collection of journalists with long lenses. We also met up with some of the team from the LOCOG (London Organising Committee for the Olympic Games) and also Education team who had worked on this. The back streets of South View Terrace have never seen anything like it....  

More photos, more TV interviews, more radio items, local and national press and then we went down to join the assembly that Hannah was giving to the whole school (a weird experience for me given that I last attended a Hothfield assembly in 1983...).

We waved goodbye to Hannah and everyone else who had turned a school run into another remarkable experience - all as part of Evan's Big Journey. 

Here are the links to the tv clips
http://www.itv.com/news/calendar/update/2012-05-02/walking-to-school-for-the-first-time/

http://www.bbc.co.uk/news/uk-england-leeds-17927166

I'm sure there will be further follow-ups as the story gets out - and it should, SDR CHANGES LIVES! 

What next for us and Ev.... another school run tomorrow, of course.

Eight - 16th April, 2012

Birthdays are usually just a cause for celebration and, on the whole, having "survived" a weekend sleep over party with Evan and two friends, Maya plus friend and not forgetting Sam (count 'em - that's SIX kids!!) today's was no different from any other eight year old's really. 

However, Birthdays are also Anniversaries and 16th April, 2004 is still the day that defines us. Defines Ev. Defines his Journey. I can still remember that day as if it were yesterday but each year brings a new 16th April and as Evan takes more steps, grinning, chatting, joking, they take us further into the future, away from that day in the past. 

Anyway - this morning, like any other eight year old kid, Ev walked into the front room to get his presents. (click link for vid)

Celebrations all round...

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...

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.