And the winner is..... Thursday 29th November

This time of year is always particularly poignant for Evan's Big Journey. Of course, there are reminders  of events and occasions in pretty much every month but not are quite as vivid as the day that Ev switched on the Silsden Christmas lights in 2010 and the band played, and the snow came, and it was nearly time to travel to St Louis. Unfortunately this year the scene wasn't as Dickensian, but it was still a nice time, spent in the company of good friends and reminded us again that we needed to get sorted for Christmas.

However, there was another big pre-Christmas event to attend. As I mentioned previously, Evan had been shortlisted in the "Youngster of the Year" category at the "Yorkshire Young Achievers Awards" but due to a hectic work, school and home schedule (nothing much ever changes) we hadnt had much chance to fully consider this - although it was clearly a great honour to be included. The last minute rush extended to the hours before we were due to be set off and, as was the case at the ball, we were getting ready right up to, and past, the time we were due to set off.

On the way back from dropping Sam off I was reminded of the day of the ball when I had to drive back home from Skipton and felt the same mix of nervous excitement, adrenaline and pride. I like a quiet, boring, existence but when Evan's Big Journey is back in town, I get a nice warm feeling, usually accompanied with a daft grin. Showtime.

A good friend (who previously featured in the fundraising wearing nothing but a wet-suit) had offered to chauffeur us to the event - a black tie event in Leeds - which was a great start to the evening and made it all the more stress-free. We nervously congregated in the reception area sipping champagne (lemonade for Ev and OJ for Garry) looking around at the other guests and trying to figure out how it might go. I'll be honest, Ev is driven and competitive - that's what makes him achieve what he does - and it's fair to say he isnt (as most 8yr old boys arent) the most comfortable at losing. So we had spent a lot of time reassuring him that it was the honour of being nominated that counted (which it definitely was) but we also practised his "gracious loser" face.

As we met the other guests on our table, we were grateful to notice in the schedule that Ev's award was first up. There was an introduction and then the presenters (Duncan Wood and Christine Talbot of Calendar ITV fame) took to the stage. Christine is recovering from a long illness herself and the whole tone of the night was positiveness in adversity. Ev wanted help with something and then I tried to sort the camera to pass to Garry in case Ev was lucky enough to win just as I heard the words "the winner of our first award is an eight year old boy from Silsden.....". There followed a piece on video and the words hardly had chance to register, a chance for Loup and I to glance at each other with a mix of pride and amazement, before we had to accompany him on stage to collect his award. A red carpet, a collection of photographers and applause ringing in our ears, before being whisked offstage.

We then had a few more official photographs and a quick chat with Duncan which would be on TV the next day and I returned to our table while Loup and Ev "powdered their noses". The rest of the evening was a bit of a blur, there were so many lovely people to speak to, but the stars were the other winners who were so, so inspiring.

Yorkshire Evening Post article

I guess, no - I know, that Evan's is quite rightly in that company but when you live with someone you perhaps dont always see it as clearly each day. Each of the winners was incredibly special but the "Unsung Hero" was Dr Kate Granger who, despite fighting a losing battle with a terminal illness, battles back to the point where you can do nothing but sit, tears in your eyes, and know that she has actually won, however temporary. We are lucky that Evan has the opportunity to do something special, an opportunity that many people dont get, an opportunity that we have to never let go.

And in the same way that the sands of time poured to a final grain in St Louis and in Trafalgar Square, and so many other places in between, so it was time for our carriage to arrive. Ev had lasted to the end of the night. An amazing night, and an amazing end to another amazing year.

You could almost write a book about it.....

small update, big news - Friday 19th October

As any parent will attest, your kids somehow grow up without you noticing. Sam is now a cheeky little kid who, this morning, served himself a bowl of breakfast, Maya stands shoulder height to Loup and is growing up faster and faster, Ev used "exponentially" in a sentence the other day (correctly, as well).

In terms of Ev's post-SDR development that sneaks up as well. So many milestones in such a short time - when we walked out of the airport at Manchester hand in hand, when he stood independently, took a couple of steps, when he walked to school, collected the flame and just the other day did that walk across the house which seemed so far away even just a couple of weeks ago : http://www.youtube.com/watch?v=Wvh23q2Gtyw&feature=g-upl

Other people can often be the ones to best recognise how grown up your little girl is, how mature your baby boy now seems or even how tall they now seem - and with Ev, of course, we know how well he is doing but sometimes things still crop up.


After a pretty amazing couple of months, where we thought that things might inevitably have to return back to normal, I think it's fair to say we were probably wrong..... On the way back from York, after delivering the flame, we had a call from a journalist who mentioned that someone would be in touch about something that could include Evan.

Anyway, long story short, we heard a couple of days ago that Ev has been shortlisted for "Young Person of the Year" at the "Yorkshire Young Achievers Awards". Click here to see about the awards.

We are so proud for Evan to be considered and, whether he wins or not, it's another sign of how much he has achieved in the last couple of years. It's also recognition for everyone that's been involved (which I guess includes us but equally includes you - however you might have helped or even if you are just reading this blog for the first time).

So I need to dig my DJ out, Loup will inevitably need to pop across the road to borrow something glamorous, and hopefully we'll have another wonderful experience to add to the collection.

Proud - very proud.... 

Running, jumping, swimming, wheeling, riding.... Tuesday 9th October

In the last blog I posed the question "what next ?" and while we have some control over what's next, in many ways we have none at all. Over the last few months we have tried to introduce more and more "non-physio physio". The intention being to try and introduce some variety - Ev is an 8 year old boy after all and the response of "boooooooring" has started to be uttered from time to time.

So, once a week, Ev goes up to a friend's stable to ride on their horse, Whitney (ex-dressage competition horse). This is largely "weather permitting" although he has done this from time to time wearing his rain poncho that usually covers the wheelchair on weather affected school runs.

We have also swapped some of the physio for a one-to-one swimming lesson (which, at 8:15 on a Saturday morning, means one less sleep-in opportunity, but no problem with that - just a large cup of tea required to help kickstart Loup who would admit herself isnt an early-bird). This has had a massive impact, not least with his confidence, and in the last few weeks he has made some great progress - to the point where he decided to just dive-in - to the great surprise of everyone watching. "I just decided to do it...." Ev replied when asked where that had come from. "I just decided to do it - and I did!!!"

The last "new stuff" which I have mentioned previously is the wheelchair racing - even though he has only been to a couple of sessions i'm loving the opportunity to get him doing something like this. Even if, for now, all he does is wheel himself up and down the 100 metre lanes his competitive streak is incredibly evident and while celebratory Krispy Kreme do-nuts on the way home for a new personal bests are a treat i'm not sure if my waistline can cope (well, it would be rude to not join in with him....)

However, there are still some niggling frustrations. All of this is all well and good. And it is good, very good - but Ev still seems a long way off properly walking independently - he has all of the "nuts&bolts", all the techniques, to do this but his confidence still seems a long way off. Yes, we mainly post the happy pictures, the positive updates and the occasionally inspiring video or celebratory tweet but for each of these there is a frustrating physio session where he can't get himself going, times when Loup (who bears a lot of the physio activity) gets upset when he'll only walk with her directly behind him so he can see she's still there and times when we simply wonder how much an eight year old can take.

Times when big progress seems to far away.

If only he would do something as small as walk from one sofa to another - a challenge Stephen (Ev's physio) has presented to him. It's nothing - four steps. He's done thousand plus steps in one go, he's walked to collect the Paralympic flame in front of a crowd, but if he would only walk these four steps it would be a massive thing for us.

Maybe we are being greedy.

But, almost out of nowhere, Ev decided to set himself this as a new challenge and - well, of course, seeing as i'm writing this blog about it - he did it. Not once, not twice, but perhaps twenty times. Good walking as well - not the couple of steps and then a lurch that he has been doing but good walking, hands down, and well controlled.

And then, well, he got so giddy, inspired by himself that he decided that wasnt enough. So he did this........

It seemed so ordinary, so matter of fact, and he did it over and over again.

A few small steps - but so much more than that.

Whatever next....... ?

Whatever next... Sunday 23rd September

The question we have been asked most often in the few weeks since the flame trip is "so, what next?"

The truthful answer is that we dont know, it could be anything, everything or just something. The majority of what's next is the day-to-day, the ordinary, and in some respects the mundane. The kids were back to school the week after and were back into it - and on the Friday we walked to school as we had done in the last few weeks before school term ended.

Unfortunately, the weather on the first week back can only be described as "damp". This is actually quite difficult for Evan as it effects his control - the rubber stoppers on the end of his crutches can slip on the wet ground. This definitely impacts his confidence which is key to a good walk. So we ended up doing the last bit "one-handed" but it was a good start. it may be that the bad weather means that we wont be able to do this easily each week.

The week after, we decided to add another plate to those already spinning and, taking advantage of Grandma Skipton being able to take Maya and Sam to school, we added another walk to school to the regime. This time we went for one-handed all the way - which is easier for Evan but we try to be very loose handed so that he has to be in control. He did really well and managed it in about half-an-hour. He now has a series of record times and categories for "getting there", "all the way with crutches" and "one-handed".

On the whole the walks to school are hard work but a good experience, however on the friday walk to school a couple of days later it wasn't such a good one. To be honest, he was too tired and moaned, groaned and grumbled all the way. It was wet that day as well and was a pretty miserable start to the end of the week. Strangely though, when we got to school Ev turned to me and said, "it wasn't very good that, was it Dad!?" - the fact that he knew this kind of made it a little better. It takes a little extra planning to be able to do this, we have to take advantage of good friends who take Maya and Sam to
school - and probably have enough on in a morning - and we are very lucky that we have these good friends.

The other type of what's next is more like "what's new?" - such as the walking one-handed on a wednesday. Evan also went to his first Wheelchair racing club last week. Inspired mainly by Hannah Cockcroft and our experience in London we have managed to find a club in Leeds which ties in with everything else going on. The chair they had available was a little too big but he could wheel himself up and down the fast lane. The grin as he reduced his "pb" from 100 to 95 to 84 and then 83 seconds
(for 100 metres) proved that perhaps he has a little of what he needs and perhaps he is on the first steps to "Wherever 2020" (I have already googled where it might be....) but even if he doesnt make it, as long as he enjoys it and he finds some new friends it will still be well worth it.

The final aspect of what's next is what can only be described as "Celebrity stuff". It's weird saying that but like it or not, Evan has achieved a level of local celebrity - as evidenced at wheelchair racing, where someone said "ooh it's the lad of the telly" (which was brill) and someone yesterday remarking to Loup, "I didnt realise you were Evan's Mum." Celebrity doesn't need to be a term reserved for talentless attention seekers - Celebrity comes in many forms.

In fact, such "status" this led to an invitation to be part of the Relay for Life
http://www.cravenherald.co.uk/news/9940759.Lord_Lieutenant_to_start_Craven_Relay_for_Life/

It's an event which celebrates fundraising for Cancer research and Karen Weaving who is Chair of the organising committee helped us during our fundraising. We were a little unsure of how Ev's particular story fitted in with this great cause but it soon became clearer. Part of the event was to celebrate the survivors and, of course, to remember those who weren't so fortunate. You dont need to delve far into the lives of those around you to find that this is something which can have a devastating impact. As we found those around us both humbling and inspiring, it didnt seem so out of place for Evan to help show how you can achieve something if you have the right spirit and also support. The event was then opened by Lord Crathorne, Lord Lieutenant of North Yorkshire - who himself recalled his wife losing her battle with the disease a couple of years earlier.

The best way to describe the event itself was a feel-good, 24hour, non-stop, sponsored walk and as we headed off I'm pretty sure that Loup was planning participation for next years event.

Watch out Yummy Mummies!.

Saturday 25th August - Still more to do....

On the way back from London, everyone was saying that we'd be able to have a nice long rest over the weekend. Not at all... Ev was up (bright and breezy) as was Loup (less so) for his 8:15 swimming lesson and then as soon as they were back we headed off to the John Charles Sports Centre in Leeds where the Leeds part of the flame was star attraction amidst a Paralympic Sport taster event.

A few years ago we looked at disabled sports options for Ev but there were a number of reasons why we didn't take it further. Firstly, and the main one, was that we started to look at the SDR surgery at the same time and this, the start of "Evan's Big Journey", quickly took over our time and energy - leaving only a little for extra-curriculur activity, secondly the clubs tend to be further away and have later start times which wasnt great when Ev was only 6 and already had a hectic schedule with school and physio. Finally and probably the most sensitive one to consider was that it was a bit difficult to come to terms with the fact that Evan would, at that time, almost inevitably be in a wheelchair for the rest of his life at some point. We tried not to use his chair as much as possible - even then trying to get him onto his kay-walker.

Now, he doesn't need it - yes, we use it for longer distances and he certainly will use it for a long while to come - but things are different. Much different. It feels the right time to pick it back up - of course inspired by the events of the last couple of months and what was to come with the Paralympics.

Not only was the event a chance to reacquaint ourselves with the flame for one very last time, it was also the chance to meet with Ev's SDR buddy Ben. Ben is a couple of years older than Ev, lives nearby and had travelled to St Louis a couple of weeks before us and our visits had all too briefly overlapped. However, we'd kept in touch since (again, all too briefly) and Ben is also a member of Leeds Spiders Wheelchair Basketball club who were on display at the event.

The event started with the introduction of the flame and then it was off to try all of the events. Well, that was the plan but we were quite unexpectedly asked to pose for photos with a number of people who had seen Ev on TV (including one rather elderly lady with a brand new blackberry), a local boy who is going to be one of the first to get SDR in the UK (in Leeds - Yorkshire driving the way again!), a family who had just got back from STL and also an old work colleague of mine who had come along to the event and wanted to say Hi after seeing Ev on TV (and recognising me...).

It was great to hear that (Dr Park's version of) SDR was now available in the UK but unfortunately it still needs to be funded privately rather than via the NHS. However, a small step towards SDR changing even more lives - but more work needs to be done.

None of this was unwanted and made for a very pleasant, if not surreal, experience but we then had chance to try out some of the events - as did Maya and Sam. The exhibition of Wheelchair Rugby was particularly boisterous and the Wheelchair Basketball participants were able to throw hoops much more accurately than I could. Given that Ev has been particularly inspired by Hannah Cockcroft (who makes a bid for Gold tomorrow, as I write this) it was great that he got a chance at Wheelchair racing. Let's hope for somewhere exotic in 2020 and 2024 - it would be great to attend both Paralympic and Olympic events... (no pressure, kids !!)

It was a great experience, topped off, with Ev walking a lap of the athletics track (400 metres) - walking one-handed with Loup. We just need to have a think about what he wants to try going forward.

We also had to say goodbye to another of "Team Evan Flame" - Tom had arranged much of the trip and was also a new friend we hoped to see again sometime.

Now, we could head home for a rest - but looking at the clock we realised it was past two o'clock and the kids were hungry so we headed off to a local restaurant for a special treat. As we got in the car we switched on the radio, I recognised that voice. The kids beat me to it ~ "Katherine !!!". On duty reporting from Peterborough where Leeds United were playing.

Everyone has to get back to normal at some point....

Friday 24th August - The biggest of big days (pt 2)

...on the way back to the DCMS offices we were stopped twice. Once by a lady who said that "as a member of the general public - I think you, your family and your little boy are fabulous" and then by another who said pretty much the same but was lucky enough to get one of Evan's (by now) "trademark hugs" - we also passed a couple of girls who were wearing the polo-shirts we had seen around DCMS, so had been helping out, and they waved and said "Hi Evan....". I explained to Joe from Look North that I'm often just known as "Evan's Dad" on many occasions. I don't mind - don't mind that at all.

Tom from Yokshire Gold commented that he couldnt believe it was only 9:40 - I agreed, it felt like mid-afternoon, but there was plenty more to experience.

The DCMS offices were full of post-ceremony euphoria and there was a great buzz around the place as other ambassadors picked up their flame transportation units (essentially a bucket...) - but we were soon in taxis heading off to Kings Cross where we were met by East Coast again who escorted us to the First Class lounge for a very quick drink and a bite to eat before we got on the train back north.

As we were settling down, Amy asked me if we needed her to get everyone to give us some space for a while. Did we want the Train executives, the TV crew, the other TV crew and the Radio presenter to give us some time alone. If you had asked me that question a couple of weeks ago I would have said yes, absolutely, but not today. It didnt feel like we needed it.

I was sat at the back of the party and was able to see everyone bustling around ahead of us - these were all people who we had known only briefly - maybe only for a day or so - but for now we considered them friends and we were truly grateful to have made all of their acquaintances. Of course, they were there to cover the story - but I think they enjoyed it while it happened. I think Evan's Big Journey does that - people cross it's path and they get drawn in, often leaving with a smile on their face and also usually a little orange wristband. It's brought us the most amazing experiences and despite the reasons why it started it, it's been the trip of a lifetime since. One of the guys got in touch afterwards and commented that; "Every now and then a job comes along that makes me think I love my job. This was one of them". That means a lot.... an awful lot.

There was still a little bit of time for a last couple of recordings - and Sam really got stuck in "playing" with some of the cameras - which the owners very kindly but nervously let him do. This was a really good bit of the trip - it hadn't just been about Ev, the other kids play their part as well. Sam is a real live-wire and is inquisitive to the extreme so we are constantly on "Sam-watch" and "Where's Sam?" is a constant phrase we use but one of the guys put it well - "he's lovely, so energetic, I could watch him all day!". Evan had said to Chris Holmes earlier in the day that he was "Mass-destruction Sam" - but in a good way, of course. On the other hand, Maya is generally quiet in company but really shone - it cant be easy for her, she hardly saw her Mum for 6 weeks when Ev was born (she was just 20 months old at the time) - and very often the focus is on her little brother - but we were really proud of her. At breakfast that morning we had grabbed a table for 5, as we usually do - forgetting in our nervous haste to get a place for Amy - but Maya spotted this and went and sat with her to ensure she wasn't on her own. Evan's purpose and drive is as much a result of this nurture as his nature.

The train journey was drawing to an end and it was quite sad - Katherine, Tina and Charlie were shooting off but Joe was sticking around and we did some brief goodbyes as we drew into the station. We exited one door and the rest of the party the other - greeting us was a real crowd of paparazzi - clicking, flashing, and beckoning us to look in one direction and then the other. Ev had walked off the train with the flame and it was quite warm and heavy. As the flashes lit up the platform, the lantern slipped from his hand....

Crash.

Silence.

Luckily, we had the five flames and were able to re-light from the official source. Still, a heart in mouth moment and Amy had to make a mad-dash down the platform to get the other lit one.

We then had to get to the hotel. The last few steps.

The room in the hotel was full - including some faces we knew; Grandma and Grandads, Mrs Smith (Ev's first teaching assistant) and also Tom Jones (no, not that one...) and Kate Nesbit who had played such a big part in the Walk to School. Kate had even delayed her holiday to attend - her family waiting in the car before they headed off to Scotland.

We said a quick hello to the Lord Mayor and his wife before the Town Crier began the ceremony. The flame was handed over - the flame that we had only had being safeguarding for a few hours but that we had known of for a few precious weeks was passed on. The flame that had given us another wonderful experience.

Evan's job was done. I think he had been a pretty good Flame Ambassador...

Soon the room emptied, everyone jumping on a bus that toured the flame around York and that was it. The last people left at a party that we didn't want to finish. One final last task to do - to say goodbye to our new good friend - Amy. (We knew we'd see Tom the next day...). This was her last day - her job was done and she was moving on to pastures new - I can't imagine how high and low she must have felt. However, she is well and truly a bona-fide member of Team Evan and i'm sure we'll keep in touch.

And with that we were done. Well, nearly - as we got into the car I switched to Minster FM - they had grabbed me on the platform and I'd done an interview on the run. We tuned in just as the news came on and there I was, trying to put into words how I felt as we dashed out of the station. We listened to the piece as we sat in the traffic - starting to realise what we had been very lucky to be part of. Slightly frustrating to be in a traffic jam - we wanted to get home.... the cause of the traffic jam ? .... it was the bus carrying the flame...

We managed to get home just in time to view the clips that the guys had put together.
Calendar clip
Look North clip

It had been the most amazing day. The most wonderful experience. The trip of a lifetime.

The biggest of big days!

Friday 24th August - The biggest of big days (pt 1)

While reading the blog of Thursday's activity, Loup reminded me that I'd missed off the fact that as we headed down the platform to catch the train, she'd been met by Katherine from Radio Leeds who had (in the nicest possible way) thrust a microphone in front of her and they had done a live interview as we got onto the train. It's an indication of how things went over those few days that something which, in itself, would have been something to talk about was lost in the melee.

As we had to meet up at 6:30, this meant another 5:30 start - a very quick breakfast, although I was so nervous I could hardly eat anything - although the kids seemed somewhat unphased, well aside from Sam who, not being such an early bird, was recovering from being (literally) wrenched from his bed.

We'd walked from the hotel to Trafalgar Square the day before so knew the route and made our way through Leicester Square which at this time of day was inhabited only by road sweepers rather than the throng of tourists we had seen the day before. We'd seen another flame ambassador (Leicestershire?) in the hotel and as we made our way onto Trafalgar Square we walked with and alongside a number of others clearly heading the same direction.

The meeting point for all 33 ambassadors was the offices of the Department for Media, Culture and Sport (DCMS) and as we hung around Jeremy Hunt (Secretary for State) wandered past (this being his department) and then Lynda came up to me, looking somewhat bemused, and said "The Prime Minister wants to meet Evan and have his photograph taken with him !". Regardless of political persuasion or opinion that you might have, when the Prime Minister asks to meet your son, that's a landmark day.

David Cameron had sadly lost his own son who was severely disabled with Cerebral Palsy in 2009 - he's a Dad and, on another day, that might have been me. We never stop forgetting, even with the challenges that Evan faces, that we are very lucky to have him...

We left Loup and Ev in the safe hands of Tom for the briefing and myself, Amy, Maya and Sam headed over to Trafalgar Square. The media were there and we spotted Tina and Charlie at one end of the barriers at the front and Katherine and Joe at the other. However, they then united to form a little Yorkshire media enclave fighting for space and position. We did a bit of celebrity spotting - we could see a few presenters in front of us (I even got asked if I'd let Gethin Jones interview me for ITV, but I thought i'd let someone else be on telly as well....) and on stage we spotted Mandeville (the mascot) followed by Seb Coe, David Cameron and Boris Johnson - the latter clearly a very popular guy as there was a noticeable "look, look, there's Boris.... " from all around us.

Then, as the clock reached 8am (it felt like midday), the ceremony started. The Master of Ceremonies was Chris Holmes, renowned Paralympic athlete who was also Director of Paralympic Integration. Speeches followed from Seb Coe, David Cameron and then the wonderfully erudite and bonkers Boris Johnson with a speech combining a latin lesson, Lady Gaga, Shakin' Stevens and a reference to the Olympics as antipasto. (Boris Johnson speech).

Then the flame was lit and the splitting ceremony commenced. Loup had also mentioned that they wanted Evan to be first up - he was the youngest of the participants - which was good as we wouldnt have long to wait - and worry... but when the first name was called it wasn't Evan. Nor was the second. Panic set in - he had been nervous and I could imagine him clinging onto Loup saying he couldnt do it, but then I heard the assistant to Chris Holmes (who is blind so had to be prompted for the list of names) whisper "Yorkshire" to him- audible over the mic.

Showtime !!!

I could see Ev enter stage left and he set off slowly. After the initial round of applause died down it was just Ev walking to the flame. He was doing it. I could see him doing the combination of walking, concentrating, balancing - so much effort for him to do this. I put my hands to my face - I was so, so, proud and have to admit to a few tears.

The crowd fell silent - willing him on, as I do so often - trying to will his feet to lift themselves. After about 25 steps, and 30 seconds, Chris Holmes shouted "Come on let's hear you" and the crowd clapped some more. Which had the effect of spurring him on but he seemed to lose concentration and after three more steps he slipped. Loup caught him and steadied him. I hoped it wouldn't dent his confidence but feared it might. It didn't. He carried on and 22 steps later he was there to collect his lantern. The crowd, as much as it could (there weren't as many people there as you might expect) went wild and Ev beamed his widest of grins. He had done it.

50 steps in a minute an a half. The most amazing 50 steps. The most unbelievable 50 steps. He'd done it - he'd bloody done it.

(Later on I found out that someone had recorded it and put in online - so you can see it for yourself here Evan walking to collect the flame)

I turned to Amy and simply said "thanks!". She had helped make this possible. Given Evan a platform to achieve something truly wonderful. He had been inspired and he had done it.

The remaining thirty ambassadors collected their flames but I wasn't able to pay much attention - totally overwhelmed. Tina and Charlie, Katherine and Joe came over to record our reaction and they all clearly had a similar response. Charlie admitted to not being able to hold the camera steady at one point. It didn't feel like they were just there for the story - we had only known them for a day or so but it just felt like they were friends, sharing the experience.

Once the ceremony had finished we were able to go "backstage" and meet up with Ev and Loup. One obstacle - I had to get in line as he was already signing an autograph for someone ! Katherine did a piece with him live to air and I couldn't believe how calm he was. He just keeps going and constantly pulls it out of the bag. I don't know where it comes from - but the power that pulled him through on his first day still clearly burns strong.

Evan had chance to meet Chris Holmes and his guide-dog who he and Sam renamed from "Lotty" to "Licky" . He was a lovely guy and they spent quite a few minutes together.

There were then a few opportunities to take some photos and record some other bits on camera and then Joe beckoned us over. Do you want your photo taking with Boris ? Too true we did. He asked where we were from - Yorkshire. Where's the sign, where's the sign ?? (each flame had a sign with the name on) and he rushed off - all whirling dervish - to get it for us. Loads of photos later he was whisked off somewhere and we were just about done.

We had a flame to deliver - and so we headed back to the DCMS offices.

Proud - so, so, proud.

Thursday 23rd August - We're off.....

After some late night and last minute packing, a 5:30am wake-up call wasn't the ideal start but we were so excited that even the lack of a shower to wake us up (given ripped out bathroom - see previous blog) had ill-effect and with a nervous spring in our step we set off. 

On the way to York we switched on the radio just as they were reading out the news headlines; "....and we join the young lad from Silsden, Evan Whitton, who is travelling to London to fetch back the Paralympic flame". The news - in our car - reporting what we were doing - while we were doing it.  

We arrived on time in York Station, parked up, got some breakfast and then about twenty minutes before the train was due to arrive we moved to our platform. Just as we would normally do and got the treats out for the kids for the journey - sticker books. Anything to keep the kids amused on a two hour train journey and as they excitedly thumbed through I got a tap on the shoulder - "excuse me, are you with Evan Whitton ?". I'd never thought of it like that, although I am used to being referred to Evan's Dad more than any other of my identities... The guys at East Coast rail (which was actually a posse of manager types) had been waiting to greet us and were worried we hadn't made it - we'd never thought we'd have a greeting party but they very kindly helped us onto the train where we met up with Katherine from Radio Leeds and Tina and Charlie from Calendar. 

We got settled down and as the train was pulling out of the station they came round with complementary tea, coffee, juice and various breakfast stuff. Looking round I noticed that Sam had actually asked for a cup of tea and a croissant and was tucking in, with a "crikey - this is the life" look on his face. How on earth am I going to explain to him that this doesn't happen on every train journey... 

Katherine was sat with us and we had a chat about what would happen over the next day or so and then Tina and Charlie came to do a bit of filming. "Just be yourself" they say - which is easier said than done. So, rather than doing that (which usually entails me trying to play Angry Birds on my phone while getting all three kids to "ask your Mum"), I went into "pointing mode" - I couldn't help it, but take a look at people being filmed on news clips and they all do it ! ... Evan then turned to Katherine and said "can I ask you a question ?". 

"of course"

"do you want to play with my Skylanders sticker book ?"

So Katherine became acquainted with the world of an eight year old and we had a chat about football and work. Almost close to being a normal train journey - but so far off. 

On arrival we were then met by yet another East Coast managerial posse who helped whisk us through Kings Cross and onto a taxi, clearly the envy of those in a rather long taxi queue on an unexpectedly sunny day. This all felt strangely weird for just a regular family on a day out. It was becoming clear that this wasnt just a regular day out. We knew that, but it was only just beginning to sink in. 

We got the taxi to our hotel and dropped our bags off and then met up with Tina and Charlie. The plan was to take a taxi via Buckingham Palace (well, the kids did want to go and see it...) on way to the Natural History Museum. However due to the Paralympics the route was closed to traffic but it was walking distance, so off we went - filming clips as we went and getting to know Tina and Charlie. On the way we passed through Trafalgar Square where, just under twenty-four hours later, Ev would be doing his stuff. Reality was truly kicking in...

Due to special permission being required for the filming, Calendar had contacted them and the Natural History Museum had very kindly provided us with a personal guide and entry to the "Animals Inside Out" exhibition (intriguing, interesting and freaky in equal measure). Tina and Charlie, having got their footage, went off to do some editing and left us to it. Katherine asked if it was ok to stay with us and do a piece later on. Of course it was - an extra pair of hands always comes in useful in a museum when you have three kids to look out for. If anyone visits London we can definitely recommend taking a Radio Presenter and a TV crew - they are very handy. 

Despite this being an extraordinary day out, the ordinary still occurs and one of the things that Evan suffers with is that when he needs to use the loo he doesn't get much warning and so mad dashes when he is caught short are very much part of our life. However, when you have a Live Radio show queued up for us in 5 minutes it does make it much more interesting. As it happens, we made it but "technical difficulties" meant that Katherine had to do a piece on her own and we arranged to do an interview en route back to the hotel.  

Given the 5:30 start we were starting to flag a little bit already, but there was more to come but it didnt seem onerous - the final part of the day was to meet up with Amy and Tom from Yorkshire Gold. They had organised everything for us including a meal out at Hard Rock Cafe, and we were really looking forward to meeting up with them again. 

We checked in to the hotel and, as ever - given there are five of us - we had to split into two rooms which somehow took the form of a "boys' room" and a "girls' room" - Lynda now the proud owner of a "long straw" on that one.... and we had chance for a quick drink at the bar before we headed off. Chance to reflect on how lucky we were. We were only part way through the trip but had already done so much and been blessed to meet such great people, who were really fantastic company. 

At Hard Rock Cafe we met up with Joe from Look North who was going to pick up the piece from Olivia and he caught up with the story of Evan's Big Journey. He sat talking to Ev for ages ("Man v Food" this time). One amazing thing was that he told us that the feedback to BBC about the "walk to school" piece was one of the best ever and Amy added that the clip had been sent to LOCOG and "Seb knew all about Evan". Even with everything else that was going on, this blew me away the most. Seb Coe. Lord Seb Coe knows of and is impressed with what Evan has achieved. Gulp. A great end to a brilliant day.  

...and with that, five very tired soldiers went back to their hotel and to bed. Tomorrow was another day.... 

Photos from the day:
Thursday morning

Thursday Afternoon

Thursday Evening

Getting Ready... Wednesday 22nd August

I'm not sure if we do it on purpose, but we don't tend to do things easily. I try to "keep things simple" but often fail to do so and we always seem to have lot of different things to do, to be five places at once, and when it rains it pours...

This morning not only did it rain, it poured. Literally. Along with the rain arriving so did a "bathroom guy" (we are renovating the bathroom so that Evan gets the benefit of a walk-in shower, essential for a growing lad), a radio presenter and a TV reporter. We also had thought we had better pack for the trip to London so three loads of washing were queued up.

Katherine Hannah was first up - she had a bit of a chat with Evan and then managed the amazing feat of leaving Sam lost for words when trying to get some quotes from us. As ever, Evan wasn't lost for words - although he did tell Katherine (of BBC Radio Leeds) all about visiting Calendar (ITV) - so that would test her editing skills. In fact, much of what happened over the next few days would surely test the editing skills of the various media teams we worked with. She also coped admirably with the background bangs, crashes and wallops generated by someone ripping out a bathroom. A few successful takes later Katherine left us in the hands of Olivia Richwald, who set up camera in the conservatory. Well, I say conservatory - it was built as that but is basically a big toy box. I'm sure (ok, pretty sure - ok, ok, fairly sure...) we'll recall it as a grown-ups' space eventually but for now it's the kids' space.

Just as Katherine had generated silence, Olivia generated harmony. She asked if she could get a shot of all the kids playing together. Now, given that we have a ten year old girl and eight and five year old boys, even Kofi Annan might struggle to get that combination, in ANY family, to play together in front of a TV camera AND do an interview at the same time. However, after about 10 minutes they had done us proud and Olivia seemed happy so Maya and Sam were excused and Evan stayed on for a one-to-one.

I was happy to avoid the camera so made a coffee, checked on the bathroom guy, did some tweeting while Loup hid by doing some washing and also checked on the bathroom guy (!) however, I did keep an ear out and heard Ev "grassing us up" that 'Maya wanted to go to Buckingham Palace but they are taking us to see the Natural History Museum instead' - which was news to me (the Palace bit) but interesting to hear the kids' interpretation of events.

After that, it was time for us to get in on the action, despite our best efforts to discourage Olivia that she needed it. To be honest, I struggle to answer questions in this environment. I tend to mumble something and then think of a really good answer about an hour later. I like to ponder on things and then write on here later on but, as I said, they didn't go to editing class for nothing. So we all sat there on the sofa and answered a few questions and, perhaps sensing that we'd collectively had enough, Olivia called it a day and dashed off into the rain laiden down with her equipment.

We then had the rest of the day to ourselves. Which, if we did things easily, would have been spent sitting around worrying about what was to come. However, we don't do things simply, so the rest of the day was spent attending a birthday party, picking up some friends from the airport, having haircuts, going for baths/showers (going to London after three days of bathing in a sink might not give the right impression...) and finally getting packed (oh, and I popped to the local pub quiz for a bit).

We were ready.

As much as we could be.

What would happen over the next couple of days? -  We weren't really sure, but we were ready for it.

Just...

Inspired - Thursday 16th August

It's only a few days since the end of the Olympics, bid farewell by the brilliantly bonkers closing ceremony, and every mention of what is next - the Paralympics - makes our hearts beat a little faster. It's a little over two months since we found out about Ev's involvement in the Paralympic Flame as Ambassador for Yorkshire and it was always such a long way off, and would be after the Olympics which felt like it would go on for ages.

It's here now though. Next week. Details are starting to feed through, and yesterday some (ahem, First Class) tickets for the journey down. It all feels slightly surreal to be getting the "vip treatment" but we are very appreciative of this opportunity and what it means. Everywhere still seems to be so "up" after the Olympics, especially what Team GB achieved, and to be a continued part of this in anyway is such a great opportunity. The paralympics is going to be fantastic and i'm sure Yorkshire will continue it's domination of sport (we are independent now as a result of the Olympics, right...?)

So many people have been asking about the trip and what we'll be doing and it's great to be able to share it. We have been arranging the trip with Tom and Amy who work with LOCOG on this as well as with ITV-Calendar who are going to accompany us and do some filming of the trip. We have a great opportunity to visit the National History Museum the day before. Totally, totally out of our comfort zone but it will hopefully be something that we can look back on, and gives us the opportunity to share, as much as possible, our trip with as many people as we can. Not just Team Evan - but anyone. In fact, after the last time we were on tv (sorry - I can't type that without the inner me raising an eyebrow...) we were contacted by someone who is going to STL with their son next year and are at the start of their own journey and who said "(we) thought it was wonderful that Evan is doing so well and the achievements he has made - such an inspiration for us".

I'll try and provide as many updates as we can (probably via twitter @andywhitton) but photos and blog will inevitably follow. 

If Evan can inspire just one person or one family in the same way that Team GB have and will inspire the whole nation then that will mean so much to us. 

Looking forward to it - nervous, excited, intrigued, inspired!

Down on the Farm - Monday 6th August

We never know where Evan's Big Journey will take us; a rain drenched walk to school one week, presenting an award at the O2 Yorkshire Media Awards the next. As a result of the latter we were lucky enough to meet a couple of the actors from the show; Bhasker and Fiona - and a couple of weeks later we were lucky enough to get an invite to the Emmerdale studios in Leeds.


So off we drove a couple of days ago and were greeted by Alli who took us on a "behind the scenes" tour of the studios. To be honest, the kids are more into Phineas and Ferb than Amos and Mr Wilks and due to it being on around bathtime we dont watch it as much as we used to so they didnt really know the characters or locations but when we walked into the Woolpack, it was amazing (ok, for me it was...). The attention to detail was amazing - just like a real pub ! We had a few shots (photos, not drinks - although there is real beer in the pumps) and then moved on.

Even if not regular viewers we still recognised a lot of the sets (admittedly some from Harry Hill ?) but when we went into one set and saw a picture of Seth Armstrong (legend!) on top of the telly we had to have a picture with it. 

The boys loved it and even did a few scenes - which Alli most creatively and patiently directed. I think they would have stayed there all day re-enacting scenes.

However, our time was up and we were taken for lunch in the studio canteen and got chance to meet Bhasker again and then had to say bye to Alli and head back home.

We've since paid more attention to a couple of episodes and it's really weird to say "we stood there", "look, it's that" and "Ev was there". A really great experience and we were so lucky to be given the opportunity to visit. Massive thanks to everyone who was involved.

One final thing...

a spoiler.....

it's not called Emmerdale Farm any more !?

Ambassadorial duties - Monday 23rd July

Monday was simply another "one of those days". We'd known for a week or so that this would be the day that everything was announced in respect of Evan being chosen as Yorkshire Flame Ambassador, and had been in discussions with Amy (our contact) about press releases, quotes from Evan, possible media opportunities and early stages of planning for the trip to London.

On the whole, we are happy to do pretty much anything - but the one thing that we never did during the fundraising was television. (We had a couple of opportunities but for various reasons chose not to). However, this felt different - it wasnt for us as such. Who is it for ? At the most basic level,this is an opportunity for Evan, but in the wider sense it's a recognition of everything that has surrounded Evan's Big Journey and everything since.

So when Amy asked if we would do some TV (local stuff - Calendar and Look North) - we had a chat and said we would, but only if it was pre-recorded. We were anxious enough about this, and the pressure of live didnt feel right for either of us - and Amy was able to sort this.

As Monday arrived, so did Summer, and then a Calendar reporter - camera in hand. I hadnt really thought what this would involve - if we didnt think about it, it wouldnt happen. Right ? Wrong !

They dont mess about these guys - moving from story to story - and as we were saying Hi to Victoria, Ev came out (v.nervous) and to get him to warm up I sat him on my knee. That was my first mistake. "Ah, great shot - we'll go with that....".Within what felt like about a minute after they arrived we were ready to go. I got asked a few questions (cant really remember what I said), then it was Loup's turn and finally we did some "family play in the background" scenes and it was "in the can" and they were gone. 

We then had a few hours to kill - couple of tweets, facebook updates and other messages but before we could do the next bit of media stuff we had to get back to real-life as Evan had an orthotics appointment at Airedale to get fitted for some new splints. Once that was done we rather nervously headed off to Leeds.

At the Calendar studios, we were ushered into a room just off the main office and were joined by the presenters who had a quick chat about what this was all about. Ev's SDR buddy Ben is a regular visitor to the Calendar studios and one of the presenters (Tina) had done the Walk to School report. So they were well-versed on the background.

Initially, we thought just Loup and Ev would do the tv but (for some reason) I said i'd have a go as well  and they took us up on the offer. Ev and Maya (plus Mum and Dad) were reasonably subdued but Sam was getting ever excited.

We did the piece (I wont give away any "behind the scenes" info...) and, somewhat miraculously, the first take was good enough. So, we had a quick tour of the gallery and were soon heading off.
Highlight of the experience was seeing Tina asking "Where's Sam?" and looking around nervously when she had lost sight of him. Fair enough, given the value of the kit around. Funny nevertheless.
Biggest regret was that it happened so fast that we didnt take the chance to get photos and authographs, etc. Although I suspect it wont be the last time we visit those studios....

Next up was a trip across Leeds to "the beeb" and this time, it was decided that "Loup and Ev" were the perfect match to "Christa and Harry" so myself, Sam and Maya watched from the dressing room. We did remember the camera this time and got some good snaps. As you can see, Sam remained "not subdued".

Last but not least, Loup, Maya and Evan then headed downstairs in the building to do a piece on Radio Leeds. I didnt get chance to hear it, as it was live, and I was with Sam in the (notorious?) BBC canteen / waiting area. Loup thinks it went ok, but like everything else that day, it went in a blur and we'll try and track down the various pieces of coverage and put them on the website shortly. (I have a bit of a backlog in this regard - but i'm on the case....)

Finally, we headed off out for a family meal - time to sit down and chance to reflect. Who knows where this opportunity will take us - and we are so grateful for the chance. Yes,we are so far away from our comfort zone that it is a mere dot in the distance, but I know we are the better off for it - even when it feels scarier than that :)

What next ? Probably some more of "those days"....

"Team Evan" - Tuesday 24th July

This is just a quick update to say a big THANK-YOU to each and every member of "Team Evan". 

From the very first people who got involved and convinced us we were doing the right thing to people who beep their horns when Evan walks past in the rain, to the "new members" (including our new celebrity friends...) who assisted with the media stuff yesterday. If you're reading this, you're in the team ! 

Some days are more normal than others, some are more difficult than others, but every day is interesting. 

However, every "like", every "retweet", every new friend or follower helps us, spurs us on, and keeps us going. 

Thanks!!

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....