Growing up - and looking back

It’s been a while since I wrote an Evan’s Big Journey blog.

On one hand, I apologise for that - I know that so many people who have helped out over the years or have met Ev in some way or another like to keep in touch. However, on the other hand, I don’t apologise - not writing it as often means that Evan is moving on. So much has happened in the last couple of years that we could write a book, and one day I might...

That said - this week something has been poking me in the side, whispering in my ear, prompting me to write another one. Well, two things, in fact.

The first is that feature on Facebook which tells you what you were doing this day on previous years. 5 years ago to be specific. This was the time when we had just started fundraising and events just came along one after the other. There were updates about loads of twitter based celebs retweeting that led to loads of website hit and donations. Other updates about starting Evan’s Big Ball and Win Christmas - and updates about so many other events. We even did a piece on Pulse FM that - until looking back just now - I’d totally forgotten about. We’d hit over £18,000 in just 2 months. All of this somehow didn’t seem as bizarre back then as it now seems when my phone reminds me first thing in a morning that “you have memories...”.

The second is that for the last couple of days Evan has been picked up by school transport to take him to South Craven. Secondary school. Something which just over 5 years ago we could never have countenanced. School has been a massive part of Evan’s Big Journey - as we left him in the hands of first Aireview and then Hothfield but South Craven - Secondary school - is the biggy. We wave him off, and it’s tough. He looks small again, and we have to hand him over to someone who will look after him. We’ve had to do that quite a lot; whether it was the team at Jimmy’s,  Dr Park’s team or at the school doors. If the activity of 5 years ago hadn’t happened then the last couple of days would have been so much different - and certainly harder.

He’s been fine the first couple of days - aside from a couple of mishaps with his schoolbag but life’s like that and he’s survived. Perhaps one of the biggest steps of Evan’s Big Journey - but he seems to be taking it in his stride.

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

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....