Living with Cerebral Palsy 🍋🍋

Sunday, 29 March 2015

Friday, 27 March 2015

Happy days are here again?

It's been a bit of a mixed bag for Elin this week. Back to being very up and down. Another visit to docs on Tuesday with a funny ear and some mild antibiotics prescribed which thankfully so far haven't affected her gut! Elin's dystonia was pretty bad at the start of the week too but I'm happy to report it has calmed down a little and we are certainly getting more smiles this end of the week! Could this signal an improvement? Hope so! 10 days until DISNEYLAND arghhhhhhhhhhhhhh!!!!!!!!!!!!!! Wishing you all a very happy Easter, I will update as often as I can but Disney pics might have to wait until I get back!

Here is a photo I have just taken. Hope the sun stays out for us this Easter!


Friday, 20 March 2015


I have had a bug the last part of this week and never being ill (I don't have time to be il!) I'm not that good at dealing with it. I suppose a rogue wisdom tooth and stitches in my back after having some horrible moles removed hasn't helped- I feel about 93! So, I've been a bit-not myself. Thankfully, Elin has been amazing. The only thing keeping me going this week has been seeing her so happy! However, she has been pretty dystonic today and yesterday and absolutely terrible on the lengthy school bus ride home. It takes quite a while for her to stop spasming when she gets home when she is like this. Im sure you can imagine what that's like and I won't bore you as I have blogged about it many, many times before. But I will never ever get used to seeing her so happy and joyful one day and so distressed the next. Never is the need to want to talk with her more heartbreaking than when she isn't happy. I live with a lack of communication with Elin, but I never accept it. Yes, thankfully we can communicate with her in our own way. But I don't want to communicate with her in our own way. I want to talk to her, and I never will. Sometimes this barely enters my head (good times) but sometimes it weighs on me like I'm trapped under a building (bad times). The highs almost make the lows even worse. Or, do the lows make the highs even better? Who can say. I only know I wish that things were different.

Have a good weekend folks
(don't worry, I'll cheer up soon. Im about to have a creme egg for a start)


Sunday, 15 March 2015

A gruff weekend...

It's been a busy weekend!
We have been enjoying a visit from baby Gruff, Elin's little fluffy-egg-headed friend! You hardcore blog fans will remember Gruff from a couple of posts last October, and Gruff-ster hails all the way from Brighton with his lovely Mummy and Daddy and was squished into the confines of Holly Cottage with us lot all weekend, the poor thing! But he didn't seem to mind and  Elin was in her element. When Gruff cried, she laughed. When Gruff laughed, she laughed. When Gruff saw her feet dangling off the edge of the sofa and pulled both her socks off to chew her feet, she laughed. Gruff was completely fascinated with her and they amused each other for quite a considerable amount of time at one point- Gruff patting her and pulling her top/patting her cheeks, Elin laughing in response, Gruff staring intently at Elin trying to work her out-and repeat. If you think this sounds cute- it was! It was amazing to see Gruff and Elin playing in their own little way. She clearly loves having other little people around. Another flaw-if that's what you can call it- of Elin's condition is that she tends to spend a awful lot of time with adults. You can forget that she wants to be in the company of other kids who will crawl all over her, pat her repeatedly and shake their toys for her to make her laugh- it's like she really knows the difference. There's something in the energy and aura of kids that adults just can't emulate, however enthusiastic. We are really going to miss baby Gruff, especially Elin!
Then of course, it has been Mothers Day. We all went out for a meal today and Elin gave me the best present ever- she sat in her chair! I remember this was the same last Mothers Day. Maybe she's gives herself a little talking to for my special day!! It was lovely not to have to watch her be agitated in her chair, or to pass her between everyone to try and keep her calm (it's getting harder to eat your dinner with one hand and hold her on your knee with the other- she's a big girl! I went for Risotto today too, there would've been more rice on the carpet than on my plate). Happy Mother's Day to all the other Mummy's out there - I hope your day has been just as lovely.

Amusing each other

Don't even think about it Gruff.....
 Gerrof Gruff!




Sunday, 8 March 2015

Litte Red..

Mother said
"Straight Ahead"
Not to delay..or be misled...

World Book Day 2015

So it's pretty obvious who Elin went to school dressed as on World Book Day! She even took a basket of cakes for her teachers (sucker-upper!) and a little story attached- which in the typical spirit of her school was returned with a continuation of the story and a gorgeous photo of her playing with her friends in their costumes!  Too cute. If only everybody could realise a little sense of humour, or imagination, gets you a long way. I was dismayed to hear a phone-in on the radio today with loads of parents complaining about Book Day because it was too much hassle/too expensive for costumes. PLEASE!!! Why has nobody got any imagination anymore? We were lucky as somebody bought Elin this lovely costume for her birthday and I kept it for World Book Day. But seriously, you don't have to buy a costume!! In my class at school one of my pupils came in his black jeans, a black hoody and his black trainers. He was a Dementor, he said, from Harry Potter. He then went on to tell me all about them and write a wonderful descriptive passage about being a Dementor. What did his outfit cost? Nothing. How long did it take to sort out the night before? Two seconds. But his Mum had obviously done the unthinkable and actually had a CONVERSATION with her child and encouraged him to use his brain. Another boy, in a bold and inspired choice (and my favourite I have to say) stuck one of his sisters dresses over his Everton kit and came as 'The Boy In The Dress' by David Walliams. Brilliant! The point of World Book Day is not to order a big fancy costume from the internet or spend days stressing about it, but surely to ignite imagination and inspire children to think about books and reading, and characters and stories?!!!!  There are so many things you could come as just by applying a bit of thought. If this post sounds like I'm going on a teacher rant, I am.  I can't think of many more important things you can teach your child than how to enjoy a good book. My sister and I used to literally love going to Chester  to choose a new book, being in a book shop today still makes me feel a bit giddy. I read the whole of 'Matilda' in one sitting in my wendy house once - that feeling of just not being able to put a book down is like no other. In all honesty, and just to climb down off my high horse for a minute, I can't help but feel our love of books as kids was mostly inspired by the total lack of anything else to do. I guess a lot of kids today have so many more distractions with the internet and whatever.  But surely getting lost in a good book is ultimately more satisfying than anything you can do in cyber space? 
Oh god. I think I'm getting old.
Anyway the moral of this story is- Parents! Stop whinging and join in the fun! Oh and kids- READ. READ. READ SOME MORE.
That is all, rant over :-)
PS Elin is ok. But not herself. Another very mediocre week and I still feel that we haven't seen her firing on all cylinders since Christmas really and truly. It's a lot of work to get a smile and that's really not Elin at her best. My next step is getting her ears syringed as I fear they may be a bit waxy, thus maybe making her feel a bit weird and off balance? Probably clutching at straws. But for now, it's all I've got. G'night Elin fans, have a good week- I'm off to start a new book.... x


Saturday, 7 March 2015


Forgive my lack of posts- had a very busy week and now have a 'post back-log' DOH. I'll start with this one: Last Saturday was the 'Cherish' Charity Oscars night to raise money for the Special Care baby Unit in Wrexham. Despite being Chairperson of the charity I cannot claim to have had a huge hand in organising this fab night (thanks to the amazing Nicola!) but I certainly couldn't have been more proud to be there. It reminded me of just how many babies have been helped by the unit over the years, and how generous people are when it comes to helping our little charity to survive. I joined the Charity when Elin was a baby, having seen a plaque dedicated to Cherish in the parents accommodation we stayed in for the month after she was born. I cannot tell you how invaluable those rooms were to us, to be able to stay on the unit (particularly when our newborn was in ICU!) and be close to her. I think going home to an empty house without her would have killed me after giving birth, and thanks to Cherish I didn't have to. Since then I have heard many stories over the years of families who have been helped by Cherish and each time I am so very proud of the work we do to keep it going. We were lucky- we lived in Wrexham so at best, without the accommodation we would have been 15 minutes away. But for families coming from afar as Bala, Shrewsbury and even further afield they are a godsend.  You really cannot imagine what it is like to spend the first month of your babies life in hospital, wondering if you will ever bring her home, until you've had to do it.  It still makes me feel sick now, the memory of the ward sister ringing the phone in our room in the middle of the night....running down the corridor...terrified of what you might have to face. All at the very time that is supposed to be the happiest in your life, when you should be home surrounded by family and cards and balloons. All I know is without Cherish an already unbearable time would have been even more so, if that is possible. If anyone out there *shameless plug alert* would like to donate- you can find us on Just Giving. In the meantime I'll leave you with a photo of my family at the wonderful 'Oscars' night,  minus one very important little girl, who was conspicuous by her absence, but the very reason we were all there.
We Cherish you, Elin, for always xxx


Sunday, 1 March 2015

Cymru Am Byth

Dydd Gwyl Dewi Sant Hapus, Pawb!
Elin has been enjoying a victory for Wales in the Six Nations on St David's Day weekend. She has also been doing some good standing in her frame, good playing in her be-active box, good listening to apps she likes on the iPad and some not-so-good sitting (you can't win 'em all). Wonder what this week will bring? Happy St David's Day folks.

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