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Sunday, 21 August 2016

The Chronicles of Elin (Part Three)

Elin is continuing to have an amazing Summer holiday and has even seen the sun a little! A bit more of a low-key week really but still pretty busy and lots of fun. Keep it to yourself, but Elin has been on a DATE!!!!
Yes, she had a hot date at the Zoo with her boyfriend from school, Llew!!!  Since Llew had his cousin staying with him and we had Elin's nephew young Arthur staying with us, we thought a group day out might be just the ticket. Llew's Mummy and Daddy also take advantage of having yearly zoo membership so I'm sure there will be plenty of dates in the future! We had a wonderful day despite pretty torrential rain. Elin was BRILLIANT in her chair and we were so proud of her. Our fingers were wrinkly when we got home, like when you've been in the bath! 
 Elin loved the smell of the Monkey's this time!! 
Good looking on the boat ride!! Well done, Elin!

So even though we got soaked at the zoo, there have been some sunny days for Elin too! She has been chilling in the garden, visiting Ty Mawr Country Park and having a go on the park in the village which has disabled access :-) 
Elin loves being out in our beautiful garden (thanks Daddy Drake!) and I love it when she loves it because I get to read a book in the sunshine :-) 
You might have noticed a distinct lack of Caitlin lately! That's because she has had more holidays than Judith Chalmers this Summer! Elin has missed her loads and this was the day they were reunited after two weeks. Absolutely gorgeous!!! 

As well as all of this fun, Elin has been given an amazing new SEN toy by someone who didn't want it anymore. It's a special soundboard and plays various different sounds (hundreds in fact) when you press the buttons. We are still getting to grips with it, it can also record voice messages to play via the buttons, but so far Elin loves it! I'm glad someone was kind enough to give it to us because at almost £800 we never would have been able to afford it (I won't start!!) 

Elin has also been demonstrating some excellent standing this holiday. Well done, Elin!!! Hope all you lovely blog readers are having as good a holiday as Elin is. We've just ordered a new bag for school- is it that time already??? 

Friday, 12 August 2016

The Chronicles of Elin (Part Two)

Elin's been continuing her good spell and having more exciting times since my last post. We have just returned from our holiday in Yorkshire visiting family. It was perfect!
Well ok, not quite.....
Typical British holiday weather! But, if you're going to explore t'dales you might as well go for the full experience I say. You haven't really had an authentic time if you haven't used the words 'fresh' or 'bracing' to describe your excursions. 
I will happily take the inclement weather because Elin surpassed herself once again and was amazing. Even in her chair!! Not perfect but so much better than we could have wished for...

Boarding the Drake-mobile! 
On the way we had a pit-stop at Chanock services. Paul and I cried in the service station and not just because of the price of a cup of coffee. Apologies if you were there last Tuesday and you saw two adults burst into tears at their table in Starbucks. But something lovely happened which you don't frankly expect when you stop for a wee and an overpriced hot drink. We got chatting briefly to a couple on their way home to Scotland. The tables were so squashed together that the woman was practically sitting on my knee anyway, but being used to people turning their heads away when they rest their eyes on us with Elin I was pleased that she engaged in conversation and asked Elin's name etc. She also spoke directly to Elin which doesn't sound like a lot but actually is quite rare. The man told Paul that they had been to a classic car show, so we talked about that for a bit (you know, because my knowledge of classic cars is extensive ha) and then they talked a bit about their grandchildren when we said we were visiting Gruffy chops. As they got up to leave, the man passed me a £5 note, nodding in Elin's direction and said "Here, just some wee pennies for her holidays". We held our composure enough to thank them and as soon as they had gone we just looked at each other and burst into tears!!!!! People can be SO AMAZING. Elin was pretty chuffed with her pocket money too :-)

Those who know Elin well may not believe this was taken in the back of a moving vehicle, but it was and this is how she behaved in the car for most of the holiday! She was occasionally dystonic of course but did manage to calm herself down each time which is a new pattern of behaviour we have been pleased to notice.
So, lovely journey on the way augured well for a good holiday and hat's exactly what we had! You remember fluffy egg-head baby Gruff ? Well now he's two years old, a big boy and obsessed with trains, tractors, engines, diggers and vans. he couldn't wait to show Elin his 'Chuggington' toy...
Elin absolutely LOVED being around Gruff. Her eyes followed him around the room. She was delighted anytime he came near her to play but also loved listening to his constant chatter and buzzing round the place. Gruff is still at that magical age where he is just happy to play with Elin (and regularly tried to share his food, breaking biscuits etc in half and saying 'for Elin'- heart melting!) and doesn't really worry too much about why she's not doing an awful lot. He brought her a pine cone on a walk and when she didn't take it it just fell to the floor so her just picked it back up and tucked it in between her knee's instead. I have blogged before that there is a certain age, around three, where children start to become very wary of Elin, it's like they become a little bit inhibited- maybe even a little scared or worried of the unknown, they know something's not quite right but they can't put their finger on it. Then, usually by about five they don't tend to include her or play with her at all- it's just too much to take in and understand for them- why she can't hold the toy they brought her, whys he can't chase after them, why she doesn't answer back. It makes me thank our lucky stars for schools like Elin's who work everyday to try and break down those inhibitions between the able bodied children and the kids like Elin, teaching them not to be worried and showing how they can engage in a  different way with her to what they are used to.  Oh Gruffy, I wish you could stay two years old forever!!!
We did actually have a little bit of sun at first and used the time to go and see Skipton castle and get some famous Skipton fish and chips. As castles go I'd give it a 5/10. Pretty, but no wheelchair access (it's like they weren't even considering the disabled back in the Medieval times when it was built! TUT!!!) Also, when you've got Chirk castle on your doorstep and Caernarfon castle not too far away you become a bit of a castle-snob ('There aren't even any interactive re-enactments happening or giant dragon heads anywhere' etc) But still it was great to see and Gruff liked the cannons. (bang!)
Proof that the yellow orb in the sky does sometimes float above Yorkshire! 

 Of course the sunshine was short-lived and since no visit to Yorkshire is complete without a walk oop in t'dales, off we trotted in the rain. we went to a stunning place called Malham, which Gruff's Daddy Gareth had chosen from a 'Miles Without Styles' booklet for buggy/wheelchair users. It was a little rocky and bumpy but we made it to the waterfall, which Elin loved listening to. Considering bumps are usually something she doesn't enjoy a lot of in her chair, she did brilliantly. We did have to abandon the chair for the final leg though :-) 
She LOVED the gale-force winds!!!
On our way back down we met another Mummy, who has an 11 year old boy with C.P in a very cool all-terrain lightweight buggy. 'I thought I was the only one mad enough to do this' she joked. Nope. When in Rome!!
So concludes this instalment of the Chronicles of Elin. It is my birthday and I've had the best birthday present watching Elin enjoy her holiday.  Gruffy's Mummy and Daddy made us a lovely pre-birthday dinner with champagne and an actual proper coal fire the night before we left, which concluded a lovely, relaxing holiday. Perfect.
Maybe being 35 isn't so bad after all.
Until next time folks........

Tuesday, 2 August 2016

The Chronicles of Elin (Part One)

Hi Elin fans and lovely blog readers! Elin has had an uber busy start to her Summer holiday following her 8th birthday celebrations! I considered writing a post today about the price of special needs toys, which I have recently re-discovered are astronomical. I said in my last post Elin had enough birthday money to keep BHS afloat for another 12 months- well it turns out she doesn't, as SEN toys seemingly are priced to drain your funds faster than Sir Phillip Greene will drain 20 years worth of pensions. Anyway,  I digress. I think I'll have to save my rant about how extortionate specialised toys are for another day (lucky you!) because we've just been having too nice a time to post a miserable update :-) Let's keep things positive :-) Elin is having a wonderful break so far. She has even been sleeping through the night (that's it- I've jinxed it!). Not always good sitting but not bad on and off and then a miracle day today of fantastic sitting at the Zoo. Hurray! She has been enjoying playing with some new birthday toys that were bought for her, been to visit her Great-Nanny, stroked a horse at Erddig, been to the Disney shop in Chester to look for a treat and been to the Zoo today! Phew!!
I know some of you out there love to know what Elin gets up to in her down-time, so I am hoping to post a series of updates throughout the holidays which will mainly consist of photographs unless I have something very important to say! (who, me?) These will be entitled The Chronicles of Elin so all you lovely Elin supporters can keep up with her adventures. I hope you enjoy them. Here is Part One . I hope all of those of you out there are having an equally nice Summer thus far.

Elin listening to a fab present she received. Speakers filled with water which attach to her favourite MP3 Speaker  and play her favourite music through them whilst the jellyfish swim up and down inside and the coloured lights twinkle. Amazing!! Not even from an SEN catalogue. (Yes, that is Tom Jones you hear. Elin absolutely loves him!!) 

Elin enjoying a present of a mummy and chick who talk to each other, sing, chirp, share 'food' and can even take a recorded message to tweet back to Elin. Awesome! 
Light up tambourine hurray! 

Elin and Great -Nanny Audrey
Mummy please buy me a Nemo?!

Having an ice cream by the river in Chester.

At Erddig meeting Claire, the horse! Elin liked it when she puffed air from her giant nostrils all over her!
I love the rain, it splashes on me.......

My Daddy can't go anywhere without a cup of tea so I may as well join him!

 Chester Zoo- Just wanted to say if anyone in the vicinity is reading this and has a disabled child- Chester Zoo is AMAZING value when you get an annual membership. Elin's birthday present this year from Nanny was a membership (thanks Nanny!) It entitles the three of us to go as many times as we like in a year and get 10% discount in the cafe's and gift shop. Because I am down on the membership as Elin's carer, we only ended up paying a membership for Paul and Elin so the value is incredible. Coupled with the fact that it is one of the only leisure facilities in the area that has a proper adult changing room with hoists and moveable adult sized changing table etc, and also the new wheelchair-friendly boat ride (which I've mentioned in my blog before I think) you really can't go wrong. We're going to be going A LOT over the next twelve months! Today Elin listened to some noisy dinosaurs in the new exhibition (and laughed her head off at them), got sprayed with water along with Daddy by a particularly naggy dinosaur (how sad!) rode on the monorail, listened to some penguins splashing around, sniffed some elephants, laughed at a boisterous zebra (the noise was crazy!) and rode like the Queen of the Nile on the back of the riverboats whilst giggling at the monkeys climbing all around! Just a wonderful day. AND SHE SAT IN HER CHAIR ALL THE WAY AROUND. Who could ask for anything more? Until Part Two, folks.......
PS Thank you so much to the GP who sent me the lovely email (you know who you are :-) I did respond I hope you received it) I am always SO touched to receive feedback about the blog and thoughts from others - any readers wishing to get in touch please feel free to email me anytime. Also anyone wishing to comment on these posts should know that, due to a recent change in my privacy settings, comments added underneath posts will never be published until I have read them first, I don't always choose to publish comments depending how personal they are to the writer. Big love y'all :-) xxxxx

Tuesday, 26 July 2016

24 hour party people :-)

Hi Elin fans! As promised here is a quick update on the big birthday weekend..
Elin had a fab party and there were roughly a million people in our garden enjoying the fun! (This may be a slight exaggeration, but only slight). There was no rain, plenty of sunshine, a bouncy castle, a massive paddling pool that looked more like a water park (thanks Amy!),loads of balloons, an incredible amount of gifts and money for sensory toys, not quite enough food (doh!), too much drink, a beautiful birthday cake and smiles all round. Nobody could quite believe she was 8. It was humbling that so many people came (from all over the country!!) to celebrate with us. It goes to show how much she means to everyone and that is so wonderful for us to see. Elin's birthday isn't just an ordinary party, it's a celebration of a miracle and an acknowledgement of how special it is that the girl who almost didn't live for even eight short minutes has been bringing everyone joy for eight long years. She had a great day and followed it up with a birthday outing to see the BFG at the Cinema (which was fantastic and made me cry twice). Now, I'm off to choose her some new switch/sensory toys with her incredible amount of birthday money (which could frankly keep BHS afloat for another 12 months) Have a great day folks, keep smiling, enjoy the pics of our girl :-)

Friday, 22 July 2016

Isn't she lovely :-)

The moment we met you we thought we had lost you. But you clung to life and the minutes turned into days and weeks then months and now eight amazing years. Happy Birthday Elin, our miracle girl. We are so very lucky to have you.
 Big party tomorrow. Updates will follow :-) 

Sunday, 10 July 2016

I hate you so much right now...

Some days you just have to dig deep. Today is one of those days. I'm lying here watching Wimbledon, detached completely from it,  with Elin lying on me and I'm digging deep. I got Kelis circling in my brain because her voice in its screaming anger echoes exactly how I feel. Elin is continually writhing and very stiff today, not comfortable in her own skin, not comfortable on me, or anywhere. The dystonia has her little body in its jaws today and isn't letting go and I have to stand by and watch the monster. We tried to take her out before, the guilt of keeping her inside on a weekend predictably eating away at us, but the guilt of taking her out and thus upsetting her dystonia further predictably crushed us in the end anyway . It's a lose-lose situation. It poured down without warning and she thrashed and grunted in her chair whilst we couldn't lift her out because, you know, we were all getting soaked. There were shelters but no seats and how do you stand carrying a chunky eight year old for very long? You don't. Fighting with her chair in and out of the car restraints, fighting against the dystonia rendering her practically impossible to hold. Fighting against the rain, fighting against the urge to scream and the lump in your throat because you just wanted a nice afternoon out of the same four walls. For her. For us. I'm sick of fighting. When trying to do the simplest of things involves a struggle at every turn it drains you. My left hip is screwed from holding her, it constantly aches and clicks and wakes me up and I'm too scared to go the doctors because, really, what am I supposed to do about it? So I fight that too.  I got up seven hours ago and I want to go back to bed. It's exhausting. Maybe the real fight is the emotional, not the physical. It takes me back in time to a place I don't want to visit. You know -the 'why us?' place where reason and happiness go to die. I hate you so much right now, Cerebral Palsy. Dystonia. Fate. Destiny. The Universe. Whatever it is . I hate you. The whole world is planning their Summer hols and we're just hoping Elin gets at least a good few dystonia free days this year to enable us to actually get her out and about without it being massively traumatic for her, and us . If those days also coincide with some sunshine well then we will feel like we've won the lottery. Woo fecking hoo. I wish with every fibre of my being that someone could find a cure for dystonia, since the arching and the writhing and the constant stiffness is what affects Elins  quality of life so badly, never the fact that she is disabled. We are so fortunate to live in a country where being disabled actually hardly stops you doing anything anymore. But the dystonia will, oh god yes. And did I ever think there was a time I would be sat here wishing my daughter was 'only' disabled? That I find myself wishing to God-knows-who yet again that I f we could cure the dystonia I would happily take the disability, honestly I would, I promise guv. What a sad little wish that is.  It makes my heart pound and my stomach twist with the unfairness of it, the frustration. So I'm digging deep, like I've taught myself how, and I'm riding it out and biting my lip and trying to care enough to root for Murray and attempting to remember the hopeless feeling will ebb away, as it always does. But though tomorrow is and always will be another day, rest assured Cerebral Palsy, I really really hate you so much right now. For everything you stole from all of us. I hate you. 

Sunday, 19 June 2016

Father's Day

Nothing much I can add! It's been a tough week for Elin as she has had Bronchitis and the evil antibiotics needed have, as usual, upset her tummy and given her impetigo. She hasn't been sleeping too well and until the antibiotics started to kick in she was coughing pretty much continually. Not nice to see :-( Paul has been as always an absolute stalwart in caring for Elin and also for me when Ive been almost too tired to stand up! He never complains and even reading this sentence will leave him incredulous- he refuses to believe he's doing anything special at all. "But I'm her Dad". I think this is what I love most about what he does for us day in, day out. He just cannot see that it is anything special, that I would not be able to cope without him. That lesser Dad's would have folded by now, or at least shown moments of weakness. That he would be totally justified in being mardy when I  leave him *literally* holding the baby to visit friends or go out for a few drinks, but instead of being mardy he selflessly encourages me to go and have fun, to get a break (Maybe this is not a totally selfless act if Liverpool are playing or there is a new Game Of Thrones episode to be devoured, ha!) That he is not interested , as so many are, in a world of social media over-sharing (which I am not judging anyone on by the way -since I do it myself with, for example, this very blog! )  or showing everyone just what a great Dad he is. He doesn't care what the world thinks or whether people 'like' a photo of him and Elin and congratulate him on being so awesome. Because he just doesn't think he is. And that is WHY he is.
Happy Father's Day, folks