Eight - 16th April, 2012

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

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

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

Celebrations all round...

SDR party - 23rd March 2012

Since we got back from STL, everything has been about the future. Ev's future and our future and, although we still have memory items everywhere, (as I sit here in my Cardinal's t-shirt, having opened a beer earlier with my arch bottle opener and with the 3 foot picture of the arch in the background) we had the chance to go "back" as it was the "SDR party" last weekend.

We missed last year's party - which is a get together of "SDR families" - as we were in STL at the time, but were able to attend this year. To be honest, it had sneaked up on us - things have been so busy at home, school and work that we didn't have much chance to let ourselves get excited. We knew for sure that Ben and his family were going but werent so sure about the others as we hadn't had chance to try and catch up. 

The first family that we met were the Wardleworths who we bumped into in a service station half way down the M1. As Loup said at the time, it was amazing that we had only really spent a week or so in each others company more than a year ago and here we were, as if we'd known each other for years and not seen each other since last year. That's the thing - such a common bond with everyone we met. 

On arrival at the hotel we were staying at, amazingly, we found that Jack - another STL friend - was in the room next door! 

Quick change and off to the party venue (10 min drive) where Ev wanted to walk in with his crutches. Ben and his family were there and as soon as Ev saw Ben, his competitive streak kicked in and he walked the last few steps into the hotel independently. Ben's own amazing journey has been tracked by Calendar (local news programme) and they have done a number of great pieces and they were there to provide an update, tied into the party. Calendar article. As well as Ben, Ev is on there (spot his feet at 01:09) and the rest of us make (thankfully, in my case) very brief appearances... 

I hadnt really thought about how the party would be (it was, unsurprisingly, emotionally charged) - and steadily more families joined the throng - some we recognised from Facebook, and it seemed weird in that we knew who they were but didnt know them. As we did more "celeb spotting" the real star of the show entered the room  - Dr TS Park.  We had chance for a very quick chat as he was whisked into the party room, and as we followed we also got chance to meet one of the physio's from STL - Mike Kenyon aka "Mad Mike" but he could quite easily by "Awesome Mike", "Genius Mike" or perhaps just "Ev's Mike". 

Then, our collection of friends from STL was complete as we spotted the Foxes and then also Jack. It was so good to catch up with them all and to see, within a 20 yard radius, all of our STL buddies, that we spent all of the time catching up and didnt have time to do much mingling with other families. Hopefully next time we will get more chance to speak to other families who we have only ever met online.

Unfortunately, Ev had had such a busy week that he was really "tired and emotional" by 10pm. So we had to head back. It was an awesome event - and we were a little sad that we hadn't had chance to join in more.  Luckily, but not unexpectedly, someone put together a video (thanks to Phil Putnam Spencer) SDR Party 2012 video - so we will always be able to go back again. 

We were lucky to get the chance to go to STL, lucky to meet such wonderful people, lucky that Ev has had this wonderful opportunity and we were lucky to get chance to be in that room. The future's the most important thing, but sometimes the past is pretty good as well...

Feeling philosophical - March 11th, 2012

I'm going to start with some philosophy - but I must admit I learnt it from "Horrible Histories"...
There is an ancient greek philisophical problem known as "Achilles and the Tortoise". In this, the author - Zeno - talks of a race where Achilles challenges the Tortoise and asks how much start he needs, and the tortoise says that it doesn't matter as he will win anyway, as long as he has some start. When asked why, the tortoise explains that if they set off and the tortoise has, say, 10 metres start. By the time that Achilles reaches where the tortoise started from, the tortoise will have moved on - even if just a small distance. Then, by the time that Achilles has caught up on this, the tortoise will have moved on again. etc, etc, etc.... So, Achilles will never catch the tortoise up.

Of course, this is clearly not true - although the more you think about it, the more you convince yourself that it somehow seems true - and, indeed, this is how it often seems for Evan. Yes, there are lots of "facebook moments" where we are so proud, but there are equally times when there are tears, lack of motivation, mo-jo is no-more and the "get up and go" has got up and gone (and sometimes Evan feels the same :)

A few weeks ago we decided to take a break from physio for a little while - and we also went away to Centreparcs (for my birthday "celebrations"). As we were rarely in a rush (which is far from being the case day-to-day) we had the chance to let Evan take a little time getting around. So, he gave himself the challenge of beating his "independent steps" record. Which stood at around 200. He well and truly beat it and achieved 500 - and if that wasn't enough, he more than doubled that a couple of days later - and managed 1,140.

He was so chuffed with himself - and so, with this new fire in his belly, he returned to school after half-term. He has some new challenges now and this weekend has seen a couple of really fantastic developments.
Yesterday, as a result of some one-to-one swimming lessons, he achieved his 5 meters badge - which requires him to do this on his front and his back. This really helps with his flexibility and confidence (although it hasnt done much for Loup's saturday morning lie-in as the lesson starts at 8:15am).

Then, as part of another challenge (of which there will be more in due course...) he attempted to walk from home to school, using just his sticks. With it being a nice morning, he set off with Mum, Sister and best friend in tow. It's 700m (Ev's walk to school route) and is a ten minute walk for us usually, but this was a lot of effort for Ev - but he did it, in 1 hour 8 minutes. At the end, he was tired but so proud of himself. Walking to school is such a simple thing for kids to do, but is something that we once wondered if Evan would ever achieve. Well, he has - another one off the list - and the fact that school was closed and he got to come back home to a well earned slice of "sticky toffee fudge slice" and a session on the wii made it even more special for him. I'm sure he'll be looking at doing quicker than an hour next time.

Yes, life goes fast, but Evan keeps catching up.

One year on....

During the fundraising, one of the things that we did was the 3 Yorkshire Peaks, and on the ascent of the last peak - Ingleborough - there is a stage where over each horizon there is another rise. It just keeps coming. Even though it was just a climb up a hill and back down, it took it out of me, and I was pretty fed up in parts - might have even said miserable - but I just kept thinking why I was doing it and it got me there. Just.

Evan's development, in fact his whole life, has always been like that and tonight, when I saw him sat on the steps, mid physio session, top lip quivering, reaching out to me - basically saying he had had enough - it made me think, not for the first time, how brilliantly he copes.

Now, this was supposed to be a "One Year after SDR" celebratory blog - and it is, well it will be, but it was just a reminder how Evan and all of the other "SDR-kids" have so much to cope with. Looking round the SDR Facebook site there are so many similar stories - school, clubs, friends, and other "normal stuff" all on top of physio - getting a "bit fed up" is pretty common it seems, and probably rightly so.

However, the truth is that SDR changes lives. Not just Ev's, not even just his family, friends and wider community (which it has). It has changed the lives of hundreds of kids and has the opportunity to change thousands more. Thousands more kids who can walk to school instead of being pushed in a wheelchair. Thousands more kids who will be able to play with their brothers and sisters. Thousands more kids deserve this chance and not all will have the support that we have had.

If you have had a spare minute to read this blog, please take another minute to visit the petition site. http://support4sdr.org/Petition.html.

So - a year on...

It is "just" a year since Dr Park worked his magic, Dr Dobbs did some more and then Mad Mike, Erica from America, and the rest of the team put him through his PT paces.

It is "just" a year since we made so many new friends in St Louis, both those from STL and those who had also trod the SDR trail; Ben, Belle, Jack, Holly & Lucy (& grand/parents and siblings)

It is "just" a year since the Shuttle bus, the Cheesecake Factory, Tigin, Applebees and of course the Arch all came into our vocabulary.

In that year so many things have changed. Some are big things ~ Ev can walk. As simple as that, he can take independent steps. He is still unsure, nervous and a little unbalanced, but he can walk. He can walk for long distances holding hands, when previously he could have done maybe a dozen steps.

Some are smaller (but massive) things. He is more mobile and more able to get himself dressed - way more than he could before. He no longer suffers from constipation which is as a result of the increased exercise he does, which "gets things going". We were also told that kids with CP are constantly in pain, similar to earache (ALL THE TIME) that is all gone now (we think -it's difficult to tell...).

There is also the wider impact - whenever we walk round Silsden; on the way to school, round town, at the park - people say hello to Evan. People at work and when we go out and about ask how he is doing, and we never tire of explaining his progress or getting our phones out to show photos and videos.

Things are better. Yes, there is still lots to do, but Ev's life is going down a route that it would never have gone without SDR.

What next...?  Well, we were so lucky with the fundraising that we are able to continue with PT for a while and have also been able to introduce some swimming-physio which will help with Ev's mobility and confidence. In fact, confidence is the next thing he needs to build up. He has all the building blocks and can walk quite far with us in close attendance, but he needs to do it on his own. He'll get there, we don't doubt it.

It isn't a year since Evan's Big Journey - it's simply another year in...

Evan's Big Christmas Message - 24th Dec 2011

So, it's Christmas Eve and it's pretty much the same as last year -kids full of nervous excitement, little bit of last minute shopping and to-do list mounting up. Except, it isnt of course, and it's been a roller-coaster of a year but we thought we would let Ev speak for himself in this Christmas blog. (By the way, these are genuinely his real answers - word for word...)

So Evan, how would you describe 2011 - "fantasmagorically brilliant"

and what was the best bit - "learning to walk"

and what are you most looking forward to in 2012 - "the Queen’s Jubilee"

and what any personal targets for you - "my personal target is to get up to standing independently for 20 minutes straight"

and do you think you’ll do that - "yeah, cos I bet I can do anything"

and what do you miss about america - "I miss Erica, Mike and everyone else I met especially Dr Park cos he is MY BIG HERO!!"

and how proud are you of what you have achieved this year. "hmm - over Mars"

and how brilliant have all the people been who have helped you - "I think they have done extendedly good
. they have been helping me over the level that they should be and I am really happy about that"

Earlier this year, you left Aire View - have you got any message for them - "Just want to say that I really really miss you and I will visit any time you want "

and how are you enjoying Hothfield - "I'm enjoying it fine. Miss Ilsley is a really good teacher a if you got her you’d be over the moon too "

and what about all you new helpers and friends "they are fine and they are really good"

And now some guest questions:
I would like to know how many steps you can walk now? "292 steps in one go"

Can you get from sitting on the floor to standing ? "yes, but it's a bit tricky" (and are you going to work on that) - "sure I am, yeah of course"
You are such a brave boy and I hope you enjoy turning on the Christmas lights in Silsden. - "I enjoyed it all right but I was nervous and then ker-bam i did it !!!!"

Hi Ev, we just wanted to know how you feel about being our local superstar and whether it's a bit weird everyone knowing who you are? "I feel ok about it and yeah, it’s quite weird but interesting." (how about when you are in Silsden and everyone says 'hi') - "I feel ok about that and it’s a bit normal"

Hi Evan :-) We would love to know, what has been the best bit about having SDR for you - "I got to learn to walk"

what have been the best changes "instead of me just thinking like I used to, I just stand up and do it"

oh and Jack wants to know, is total wipeout still your favourite show :-) "yes it is, and Horrible Histories and say hi to Jack for me"

Lots of love Ev, you are doing amazing XXX

Do you have one last thing to say "I’d like to say thank-you to everyone in England and Merry Christmas"

A unique opportunity - 24th November

First up, sorry it's been so long since the last update.... will do better in future. Promise.

Well... so many people ask "how is Ev doing" and I try to explain the best I can, but it can be difficult to keep it brief and include everything he has done. Also, not everyone is lucky enough to get chance to speak to him.

So, (and yes, I know this gets me out of doing a proper blog for a little while) - given that we are just 3 days away from Evan switching on Silsden's Christmas Lights (see Silsden.net for details) - I thought we could give people the opportunity to ask Evan questions directly. (You dont get this when Justin Bieber does light switch on....).

The questions can be on any topic - and I will also get him to do a "guest blog" at the same time. If you want to ask something, post the question as a comment here, or on the Facebook site or even tweet me.

Legacy - Sunday 9th October

I'm usually pretty good with dates, and have been thinking about events gone by as anniversaries come along - so I was genuinely surprised last night when a friend asked if it was the anniversary of the ball this weekend. Indeed, it is... I hadn't forgotten, as such, more that we hadn't thought it.

There is so much detail that still remains fresh - many people forget that the day actually began with "Katy's Big Coffee Morning". I remember the weather was pretty the same as today to start with (pretty awful) and that the sheer amount of people there was totally overwhelming. I also remember that, as I sat counting up various big piles of cash, that we had a visit from a guy who had done a fundraising bike ride with some friends and they "had some left over" and wanted to donate it. That in itself would have made it an awesome day - but this was, for many other reasons as well, the most awesome of days. I then remember having to track down a prize for the raffle which meant that I got a strangely memorable trip to work on a Saturday. Memorable in as much that it gave me half-an-hour to reflect on the day so far and what was to come. I still kind of miss the rush of adrenalin that came with all of the events.

I could do a whole blog on memories from the ball - there were so many things that happened then that still make us smile. Not least sitting with new friends when the auction was raining money - thinking crikey, what is happening here. However, and this is strange to say when talking about a fundraising event that defied our wildest targets (probably tripling or even quadrupling our original expectation...), but it wasn't about the money. It confirmed that we should do this, gave us hope that we would, and confidence that we could.

So, how did we forget about it being a year since. How was this day amongst days not a cause for celebration, a day marked on the calendar ?

Well,  it's been a year... and we have fit a lot into it, but just when you think you could with a rest, and that the world might just stop spinning at 100 miles-hour, more stuff comes along - and this week, something clicked. As well as Evan is doing - and, as predicted by Dr Park - he is indeed walking independently, it was a little stacatto. Left foot forward, right foot brought alongside, pause, left foot forward, right foot brought alongside, repeat.... However, his news on return from school on Tuesday was that he had walked 198 steps as part of his PT, and that these were more left foot forward, right foot brought just ahead, left foot ahead of that, right foot ahead of that, repeat. Proper steps, I guess....  I did ask why he had only done 198 (that was great but 200 was a nice round number) and Ev simply explained; "well, I had reached my desk". Why walk more than you need to... We were still recovering from this when, on Wednesday, we got the news that he had managed to do 292 steps. (I didn't ask where the other 8 were...). Today, we went swimming and he even stood up in the "little pool" and walked a few steps there.

The Ball will always be a massive part of Evan's Big Journey, but that was the past and, with massive thanks to that, Evan is writing his own future now.