Elin's Diary #4

Well we started the week still in Narnia with an unheard of snow-day off school and I think it's fair to say by Monday tea-time we were all a little fed up of the snow, as beautiful as it was! It's obviously so very difficult to get Elin out in it, whereas I could have walked in it forever there's only a limited amount of time she will tolerate the sledge and her chair certainly wasn't getting out in it! It's such a shame really as I think she would have enjoyed the sensory overload of being out in it and sensing the difference. I read an article by a visually impaired person that said even though they had hardly any sight at all and  obviously couldn't see the snow, the sound and atmosphere is completely different when it snows because everything is muffled and the surfaces don't reflect sound the same. It was fascinating and I wonder if this is a little what snow is like for Elin. I really would have liked to get her out more to find out how she really felt about it, but I guess without snow tyres this is a bit of an impossibility!
                   
I did manage to get out for a bit of a solo stomp up by our house and it was just stunning. I felt like the White Witch was going to fly past on her sled looking for Aslan!
Elin was really happy to return to school on Tuesday and had a good start to the week with lots of Christmas craft and some good sitting. Sadly, as the week progressed the sitting decreased as the dystonia increased. What better day for Elin to decide she wasn't going to sit in her chair AT ALL than school Christmas play day?! Thursday saw a complete lack of ability to sir for any length of time at all and sadly it coincided with her turn as a beautiful Angel in her concert :-( This meant that for Elin, the Christmas play was a bit of a wash-out this year as it was impossible to leave her in her wheelchair and thus pretty impossible get her safely onto the stage. Once again we find ourselves massively frustrated by this dystonic condition which when it rears its head badly can interfere with her experiences so profoundly. I know on a different day she would have absolutely loved it and this is why I hate it so much- ultimately it takes away her fun. It just isn't fair.
Fortunately, one of the Drake sisters did manage to get onto a stage this week! Caitlin did her annual turn in Birmingham Town Hall for their Christmas concert. Family who attended the concert managed to get this video, for those of you hard-core blog fans who I know like to follow Caitlin's adventures too, this is her singing "I Dreamed A Dream" from Les Miserables. Sorry for the distant view.

Elin has watched this gorgeous footage (we are so proud) about five times already today and without a shadow of a doubt absolutely recognises her sisters voice and just grins all the way through. It's amazing to see! On that subject, Caitlin came home from Drama school in London for Christmas this week and managed to be here for when Elin's bus got home on Tuesday. Once again the instant recognition in Elin's face was amazing and I am kicking myself for not filming her reaction. I did manage to get a couple of photo's though which I think give you an idea of how pleased she was to see her!
                    
Just amazing. Definitely made me a bit teary!
Elin's dystonia has been a little better but she's definitely having a bad spell this week, logic dictates that it will pass but it means everything is a little more difficult and it means having to watch her be uncomfortable. Not much fun. We cancelled a visit to the Cinema in Chester today to see a special showing of 'The Wizard Of Oz' which we were really looking forward to and which on an ordinary day she would have loved because we just don't think she'd have got much from it other than upsetting herself, particularly as it's a fair journey in the car to get there (for Elin anyway!) so the dystonia would almost certainly have stolen her joy. Again this was really disappointing but we just have to accept as always that when she is dystonic some things just can't be done.  It's not about being defeatist as sometimes we do just have to try and power through it but we have to ask ourselves in some situations what it would achieve and would Elin really enjoy it when she's feeling that way :-( As a good friend is stuck in hospital with her little one this week and I know some little friends of Elin's are too, we know things could be so much worse and we have to always keep at the forefront of our minds that she is well and happy and the dystonia must just be endured! Elin copes far better with it than me actually. She is such a brave little trouper.
Fortunately we did manage to visit one of her favourite places in the world this morning- the hairdressers in our village! It was time for Elin's Christmas haircut!! Once in the chair on my knee she was as good as gold and laughed continually as usual whilst they snipped her fringe. I think you can see by the photo how amusing she found it! I think for the rest of the day it will be snuggles, stories and maybe one or two Christmas films. We haven't even watched 'The Snowman' yet this year which is Elin's very favourite. We've got some catching up to do.

Well we're entering the last week of term now and I can hardly believe how fast it's gone as it doesn't seem two minutes since we were in Disneyland at the start of term in September. We've got another busy week planned culminating on Friday with the best part of Elin's school calendar, The Christingle performance and then a visit to the stunning Chester Zoo 'Lanterns' which we so enjoyed last year. 

"It's beginning to look a lot like Christmas!!!"

Have a good week folks.

Ruth xxx