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.... 

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!.