Living with Cerebral Palsy 🍋🍋

Monday, 24 November 2014

The cold never bothered me anyway...

Oops! Bit introspective in last Thursday's post! For introspective read 'miserable and pretentious' haha. Anyway I'm taking a tip from Elsa from 'Frozen' this week, and the song that seems to have possessed a billion children in the months since the film was released. It's possessed Elin too - she loves it- we watch the whole film every weekend and play the songs on my mobile in between. Lots of good messages in the film I think, but for now I am finding this one most appropriate ...


Oh- and my very own little Elsa agree's I reckon, cos who cares what anyone else can do and what we can't, or what anyone else has got and what we haven't. Cos we have got each other and actually, that's all we need.

The cold never bothered me anyway.


Thursday, 20 November 2014

I wonder

I wonder..if they can realise...that their words sting your eyes and ever so slightly break your heart.

With the lump choking your throat and the  tremor you know would betray your voice (if you let it)
You silently smile.

It's all you can do.

Your smile gives nothing away. It says I am like you, we are the same. I know what you're talking about.
But I don't and we are not.

I wonder, what it's like to be you.
Every single day, I wonder.
But I could never truly imagine that alien life.

Do you wonder what it's like to be me?
You could never truly imagine our alien life.
But, perhaps maybe you could try.

And choose your words more carefully?

I wonder.



Friday, 14 November 2014

God only knows....

Well it's Children In Need day, it's not even started yet and I've cried about four times today- once during school assembly which was a bit embarrassing -but we watched that saccharine Gareth Malone butchering of the Avicii track 'Wake Me Up', which would have me changing the channel faster than you could say 'sick bucket' on the radio, but on screen, coupled with super-slow mo images of Children (In Need) had me predictably weeping like a baby. Maybe Gareth Malone does know what he's doing after all, with all his celebrity singers and swelling children's choirs in the background. Damn him and his spindly be-spectacled smugness . Anyway I still prefer the other celebrity filled track of the moment- a cover of the Beach Boys 'God Only Knows' , not just because  it generally doesn't make my ears bleed but because I think the message of the song is more emotive and also, of course, it reminds me of how I feel about Elin ;-)
Speaking of Lady Crawley herself, she has had a great few days! Back onto the good week of the Dystonia cycle by the looks of it! This morning, she woke us up at 6:00am- because she was lying in her bed LAUGHING. Yup, I opened my eyes this morning to the sound of peals of laughter.  Once my initial fear that she had been possessed had quickly subsided (we watched 'The Exorcist' on Hallowe'en cos we thought it would be a laugh. It really, really wasn't) I realised that it was the first time this has ever happened. What an amazingly lovely way to wake up in the morning.  She was rewarded with an immediate migration into our bed and cuddles galore of course. Maybe she'll do it again tomorrow?? I would like to wake up like that every day for the rest of my life. More importantly I would like Elin to wake up like that for the rest of her life. My own little Child-In-Need, my little Pudesy Bear, my everything.
God only knows what I'd be without you.

Happy weekend blog fans
Children In Need is a VERY worthy cause, if you are able to donate ;-)
Love, us xx


Saturday, 8 November 2014

TGI Friday

It's been an exhausting week again for poor Elin. As predicted her dystonia started on Hallowe'en and has continued for a full week. It's not been as bad as the week before half term but still, it's rendering her unable to do an awful lot except sit on your knee and be cuddled. Any necessary car rides are back to being traumatic and tiring for her. I'm watching intently for signs of improvement- she's due to improve now after all- if we are continuing down the good week/bad week route that is. I guess we'll see.
Something Elin did manage to do this week was attend an appointment with a 'Bobath' physiotherapist.  Bobath, as I understand it, is a form of physio designed especially for those affected by Cerebral Palsy. It is widely recognised as being the best form of physio for kids like Elin and most children's physiotherapists are now schooled in it's teachings. There is a centre for Bobath down in Cardiff and I know some parents have taken their children down there for intensive treatment and been pleased with the results. Elin has been lucky enough to be exposed to this form of therapy for some time now via her fab school physio's, but still it was good to go and meet one of the 'experts' from Cardiff and to see what she did with Elin.
It was a bit of a surreal experience truth be told as we entered the familiar physio room at our local children's centre- there must've been about twenty professionals sitting around the room watching us. Elin's school physio and the Bobath therapist started work with Elin immediately and I sat awkwardly on the floor with them, hugely self conscious of not knowing what to do and wondering if there were any holes in my leggings or if the bottoms of my shoes were dirty, what with 20-odd strangers looking at them. My focus was soon pulled however by the Bobath therapist herself who was quite fascinating and spoke like Dracula. Seriously. Her accent was totally 'The Count' from the Muppets!! She didn't have a purple face and a cloak but it appealed to my immature side and amused me silently for longer than it probably should have done. On the plus side, it helped relax me no end as I tried to work out where she was from, imagining gothic and intriguing countries where she rode around on  horseback at dusk providing Bobath to children in need in return for cups full of blood.  Anyway, I digress. The point is, she was brilliant.
It's hard to explain what she was doing, so I took some photo's. Sufficed to say I haven't really seen Elin in one or two of these positions before so it was really interesting. I liked seeing her standing up (against a ball) as we don't see her standing up unless she's strapped into a frame, and I said as much without really thinking -which naturally produced a collective 'awwwww' from all the people around the edge of the room and made me feel immediately sad and slightly pitiful. How can I be in a position where I have never seen my daughter stand freely and I no longer even notice? But there certainly wasn't time to dwell as Dracula was bouncing Elin up and down rather vigorously on a ball then stretching her out like a medieval prisoner on the rack- which may I add, Elin was LOVING (as much as she can love anything when mid-way through a dystonic week anyway).
So here are a couple of photo's. I noticed one of the physio's was filming the whole thing and I am greatly hoping we can have a copy as Paul would love to see what happened and I know Elin's teachers and helpers at school would too. We were very lucky to get the time with such an expert and for the first time I seriously considered travelling to Cardiff at some point to be taught some techniques to use ourselves, you know, when the Dystonia calms down and we can actually travel!
Have a good weekend blog-fans thanks for caring about our girl

And, finally, just because I know you blog fans can't get enough of Elin photo's.....

After school on Friday    ....and a little while later...........


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