Living with Cerebral Palsy 🍋🍋

Monday, 28 September 2015

Please don't pity me...

One from the archives this week for you lovely lot at Posts From The Heart..
 So 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 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.


Saturday, 12 September 2015


Thanks to all those who gave Elin money for her 7th birthday which we used to buy a special MP3 player/Storyphone. This is her doing her best to sing to her favourite song on it, "Funky Monkey" . She also loves listening to Osbourne stories and on a very good day can operate a switch we attach to it to 'choose' what she wants to listen to, or to 'pause' it and 're-start' it. She absolutely loves it and it never fails to maker her smile! Her face visibly changes as soon as it comes on and it is very clear she is listening intently. Cant wait to download some more stories and songs for her ;-)


Saturday, 5 September 2015


Well, after feeling like my right arm was missing on Wednesday and being unable to shake the sick feeling in the pitt of my stomach for most of the day (it's such a wrench after having her with me day in, day out for so many weeks!) Im elated to say Elin's had an amazing first week back at school. We can hardly believe she is Junior-age now (Year 3!). Thankfully she doesn't have to move classes or anything as her class at school is a mixed-age class, but I was still a little worried about the impact of the daily school routine after nearly six weeks off (which must be a lifetime for Elin). I needn't have been concerned- it seems she has settled back in straight away and  her teacher is very proud of her, as are we. I think this demonstrates a maturity in Elin's levels of understanding and more proof that as she grows older, she is able to increasingly make sense of the world around her. It's strange to think that she is in Year 3, since that is the year group I teach in my school. I can't marry the two in my head- the chasm between the children I spend time with at work and Elin is, of course, almost immeasurable. As they pour into my class with their pencil cases and chatter, their brains already wondrously full and inquisitive even at seven years old ("I watch them grow...They'll learn much more, than I'll ever know...") I can hardly believe that my own baby is seven years old herself. I let myself wonder what she would be like if she was in my class right now- the cheeky one no doubt! Of course I will never know. I'm not saying I'm sad about it, it's just an observation really. When I taught Nursery and Elin started Nursery I found it incredibly hard, noticing the differences between her and my four year olds in class. I think there may be a blog post about it somewhere if you go back far enough. But this time it's a easier somehow, maybe time does help to heal a little. I do know what helps is the fact that she has had a wonderful time returning to school as a big Year 3 girl and of course the school itself and staff being so brilliant and expert in dealing with her needs. It's kind of impossible to feel sad, when you have that, because Elin isn't sad. School is her favourite place in the world and if I told my class next week that Elin's timetable consisted of swimming, fun, cuddles, music, stories, sensory based learning, messy play and generally being treated like Royalty they might wonder themselves why going to mainstream school is something to be envious of! In Elin's little life it definitely isn't. She wouldn't change her Year 3 experience for the world and so, neither would I. Time to stop thinking 'What if....?' and continuing to appreciate what we actually have. "You must let go of the life you had planned in order to live the life that is waiting for you". Welcome to the Juniors, Elin. You're going to love it.

First day of Nursery/First day in Juniors :-)

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