Living with Cerebral Palsy 🍋🍋

Saturday, 17 August 2013


Just back from our holidays! We go, every year now, to Porthmadog which we absolutely love. I'm not going to lie, sometimes it hurts that we can't go abroad. I know people do, of course, with kids like Elin. With meticulous planning, the right medical insurance and travel company, it is possible. But it's not for us. I am a nervous traveller at the best of times so the thought of travelling a few thousand miles with Elin (who as you know hates travelling anywhere altogether) leaves me a bit clammy to say the least. What if our luggage got lost? What if her medication got broken or lost? How would I even begin to pack when we needed an extra trailer just to get to the North Wales coast for all her equipment/feeds etc? I sometimes feel I should be braver and just take the bull by the horns, but how much would I be able to relax? How much of a holiday would it be? Also, Paul points out rather sensibly, we should always ask ourselves 'What's in it for Elin?' in terms of going abroad, probably not much. She does not react well to heat and the sun marks her skin as well as setting off her eczema. It would probably all be too tiring and confusing for her, since she is so reliant sensory-wise on her environment. So it's not to be, but since Paul and I always went abroad before she was born and loved it, it is something that I daydream about now and then (one of many things!) However, alongside this is our love of the coast, and in particular Porthmadog. Luckily, Elin shares our love (it must be in her blood!) and it seems a rainy week in North Wales is her idea of heaven. She was such a good girl whilst we were away, calm and happy and even tolerating her chair now and then (we used the good old pouch for places the chair could not get to, or when she was fed up). She loves the caravan, I think it must be something to do with the sounds and how everything in a caravan is amplified. She loved spending an intensive week with Caitlin and her best mate Lydia (Elin revels in their teenage chatter and banter. I think she wants to be a teenager herself!) So a good week was had by all. It may not be everyone's idea  of heaven, but give us a caravan on Greenacres and heaven is definitely where we are :-)
In the caravan with Mummy
 Which way's the beach then???
 I want to be a teenager, too!
 Watching ribbons on the beach :-)
 Wig-wam fun!
 It's so funny being in Daddy's pouch!!

 Brits on holiday!
 We are not leaving the beach!

Thursday, 8 August 2013

A brief encounter..

The other day we took Elin to a popular local spot for a day out. It was a sunny day and teeming with people enjoying the weather and the start of the school holidays. We decided to abandon Elin's chair and take her down onto the rocks on the river where scores of families were already enjoying themselves. It meant carrying her, which is getting tricky, but it was worth maneuvering the deep stone steps to sit on the rocks with her and watch her listening to the flow of the river and the splashes of the other kids as they paddled in and out. I had already noticed a few people watching our descent onto the rocks, the unstrapping from the chair, the shifting Elin's weight about on my hip whilst trying not to catch her leg splints. I wondered fleetingly what these people are thinking, do they wonder how old she is, what is wrong? Mostly people just smile, on this occasion we got the offer of some help with her chair which was lovely. Anyway, in terms of people looking (or is it noticing?) I find elderly people and children are the most astute. Nothing much gets past them. So it wasn't long, once settled on the rocks and enjoying the sun, before I saw a little girl. Not looking at us, but staring. Transfixed even. Trying, I assumed to work out why Elin was being cradled like a baby and holding herself like one too but was obviously much, much older. I didn't mind, I really didn't. There is never any malice or ignorance in a child's stare, just interest. Anyway I carried on talking to Elin and Paul and forgot about the girl and her big brown inquisitive eyes. However pretty soon I noticed she was approaching us, with her Mum. Pretty unusual. People, though friendly, seldom actually speak to us (almost as if they are too frightened of somehow inadvertently causing offence. In contrast to this, I, on the other hand will speak to anyone who will listen!). The Mum explained that she had noticed that the little girl, who was six, was staring at Elin. She said that she is teaching her never to stare, but that if you find someone or something interesting or you want to find out about them, then you should just go and say hello. So the little girl said hello (still serious, thoughtful) and I told her a bit about Elin, and why she was wearing funny splints on her legs and that she was smiling because she could hear the other children playing in the river. The little girl nodded a lot. I had a little chat with the Mum then they were ready to be on their way. Before they left us though, I thanked her and told her I wished everyone had the same attitude as she did and the courage to ask about what they didn't understand, even if there is a fear of being rebuffed. So thank you little girl and your Mummy for being brave enough to say hello to us. Would I have approached me had I been that Mum and she been me in a parallel universe? The truth is I have no idea. I wouldn't know then what I know now. My life would be totally different. But I certainly hope I would and would encourage anyone reading this blog to do the same. You never know, it might just make someone's day :-)

Thursday, 1 August 2013

Our Day Out

Well Elin has had a fab day out today with her little buddy Megan! We have been to Park Hall Farm before but today was particularly noteworthy due to the length of time we spent there without Elin getting too upset or stressed with the buggy situation. We have been creating 'buggy situations' daily, even if we don't need to go anywhere and some of these have been successful outings, others have not (frustrating as ever). Now don't get me wrong, she didn't love the buggy today, but with various distractions she wasn't in and out anywhere near as much as she could have been. I love Park Hall because everything is close together and there are plenty of places to sit (pitt-stops where I can get Elin out of her chair if needs be) so we don't need to stress her out too much. Today, despite the warm weather, she excelled herself. In fact we were there from 10:30 until 4:30- unheard of! So proud of her! How wonderful to be able to be 'out' and enjoying ordinary school holiday family activities without Elin becoming too overwrought. Determined to continue daily 'buggy activities' so as not to undo all the hard work Elin, her teachers at school and her physio's have built up during term time. So far, so...not bad :-) :-) 

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