Living with Cerebral Palsy 🍋🍋

Saturday 16 May 2015

That's the spirit....

Hi blog fans...if my blog was my baby I would be a pretty neglectful Mum! Can't believe how quickly the last week has gone. It's been another dodgy week for Miss Elin. We didn't see any smiles for the first half of the week and her dystonia was pretty bad. I kept her of school on Tuesday as she just hasn't been sleeping at night and was exhausted. She actually hasn't slept well at night for almost a full week now-it's the longest run of sleepless nights we've had in a while! You can't really describe that feeling of having to keep going even though your eyes keep closing themselves but suffice to say it's not pleasant- and that's just us so god knows how she was feeling poor thing. ANYWAY as we know with Elin, there is always a corner waiting to be turned and it looks like she's turned it if today is anything to go by. I noticed she was perking up on Thursday and she was much less dystonic at school yesterday. Today, she has been delightful! I could tell it was going to be a 'good sitting' day so we went to Chester and she was as good as gold, she only got dystonic in the chair once and we managed to calm her down and she continued her good sitting-hurray! She was rewarded with a trip to the Disney store (which was in no way a treat for me you understand) and we had a great time choosing some presents. She picked a noisy Frozen book, some star-shaped glasses and a Little Mermaid swimming bag to take her cosies to school in :-) I think she might have thought she was back in Paris with the soundtrack in the store and all the merchandise! (SOB!) We also had the pleasure of meeting a very nice completely smashed drunk man who smelled so strongly of spirits that I started to feel a bit hammered just standing by him. His partner seemed completely oblivious to this, unless she was completely ratted herself-who knows? I have no idea why they were wandering around in a Disney store but anyway they were quite taken with Elin, questioning us a lot and patiently listening whilst I explained how she liked the music and lights in there. I mention them soley because they were actually my first experience ever of a stranger asking me directly what is wrong with Elin (or as the fella so eloquently put it as he indicated a wobbly finger towards Elin "What is it?"- I assume he was referring to what Elin's condition was and not what Elin ACTUALLY is cos I answered 'She has Cerebral Palsy' rather than 'Oh this? It's a small human, commonly known as a child' and he seemed to accept my answer). So it struck me that maybe everyone who isn't walking around completely sozzled out of their wits hasn't got the dutch courage to inquire about why Elin is like she is. It's understandable, but a shame. I don't mind people asking at all, I prefer educating to ignorance. So in a twisted way it was quite nice, even if the only person I have been able to educate in the past seven years was so drunk he was sweating vodka.
Anyhoo following our Disney visit we had a further mooch around. Paul managed to take forever to decide whether to buy a new jumper or not because it was 'a bit pricey' -until I pointed out it's not really pricey when you buy roughly one new jumper every ten years -but Elin was amused by the jumper shop and my quiet rant whilst he was painstakingly parting with his cash so it was all good :-) Haha. We went for a coffee (huge disappointment ensued for me here- do NOT EVER choose iced cafe latte from Starbucks its gross) and enjoyed the feeling of walking around with a happy Elin for a bit longer before we decided not to push our luck and come home. This evening Elin has the very dubious job of keeping Daddy company whilst he watches Steven Gerrard's last game for Liverpool- I am, of course, not going to choose to be in the house during this time and instead am going to take Caitlin to the Cinema which we haven't done in absolutely ages. So a nice day all round for us today. I hope you blog readers have had just as good a Saturday and that your Sunday goes well, too. I will leave you with a photograph of Elin I took in the Disney store with a couple of her purchases....
We really will never stop appreciating the small stuff. She's just going to enjoy a little resonance-board play now (see post history 'Good Vibrations') and then some physio whilst she's in a good mood (but shhhhh don't tell her). 
Have a good weekend, folks. Thanks for caring about our girl
xxxx

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4 comments

  1. I wish there was a "like" button on these posts!

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  2. Love reading your blog Ruth, Elin is just a pleasure to read about & your wonderful sense of humour & positivity is just fab 😊 xx

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  3. Yay, glad you all had a good day dude! Great Disney choices Elin! Xx

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  4. Yay, glad you all had a good day dude! Great Disney choices Elin! Xx

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