Living with Cerebral Palsy 🍋🍋

Monday, 28 September 2015

Dismaland

Sorry I haven't updated for a couple of weeks. I should have, because Elin is doing great! Really good. She is (klaxon! famous last words coming up..) enjoying a brilliant run of good health. Maybe that's why I haven't updated much. My blog is always more of a place for fear and frustration by its nature, though I don't mean for it to be. I guess that just what spurs me to write more than when things are going well. Anyway, I finally have something to say.
This weekend I experienced pity from a well meaning stranger. As you probably know by now, pity is not something I am ready or willing to accept. Empathy, yes. Sympathy, maybe. Pity? No thanks. This person was, in the nicest way, saying how hard it must be for us, having Elin. My protestations fell on deaf ears I think, probably dismissed as bravery. Im not brave. It's just I've looked pure hell in the face and we are now so removed from that it's difficult to concede that life is really that bad at all chiefly because..it isn't.....anymore. I wanted to say 'Ha! You think this is hard? You should have been here a few years ago!!!'
 This realisation got me thinking and reading back through some old blog posts from years ago. It strikes me how much more even things are for us now Elin is older. I had actually forgotten what a complete roller coaster those formative years were- though at the time I know I never thought I would forget. We were in such a weaker position than we are now. In and out of hospital so much more. Struggling to understand, comprehend her condition. Researching, appointments in Liverpool AH, continually messing about with medication, dealing with the late epilepsy diagnosis and further the dystonia diagnosis. Bleary-eyed mornings, eventually going back to work with a head full of guilt and worry, whilst all the time grieving. For a child that was never born and for what was robbed from Elin- which becomes a hidden, unspoken grief. It was exhausting. Im sitting here trying to think about when it changed. When things became easier and we got off the roller coaster. I'm not sure. We certainly still visit the fairground from time to time believe me. But the ride is smoother, familiar, less terrifying. There are long periods of wellness for Elin and short bursts of illness- an inversion of the first few years of her life. I go days, often weeks without crying now. Things that used to sting so badly leave me with a flat acceptance instead. Everything is just easier I guess. I can hardly believe the journey we have been on. I can hardly believe it took seven years before we would feel that we weren't hanging upside down from the tracks anymore. But, I'm glad we are the right way up again. Though, I cannot ever hope to completely let go of the pain and shock caused by what happened to Elin , I can hope that year by year it gets a little easier as it seems to have done, which I never would have believed. Today, to continue the theme park analogy, Banksy's fascinating 'Dismaland' is being demolished. It's gothic, nightmarish dreaminess (based of course on a twisted version of Disneyland) is where it felt like we were when Elin was born. We bought a ticket for Disneyland.... but we ended up in an art exhibition that nobody we knew had ever visited, where everything looked vaguely familiar and should have been wonderful, but we couldn't quite recognise anything and it was horrific and distorted and gut wrenching instead.
We are not there anymore.
We're not in Disneyland either.
We're somewhere in between and we're happy.
And you know what, well meaning stranger?
That's more than good enough for me.

http://www.bbc.co.uk/news/uk-england-bristol-34364808

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