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...
