Living with Cerebral Palsy 🍋🍋

Thursday, 31 October 2013

Tuesday, 29 October 2013

If you want the Rainbow, you gotta put up with the rain.....

...said that famous scholar and wise intellectual....Dolly Parton! Fairly apt for our windy adventures in Windermere this half term as you can see!
So after days of BBC weather warnings forecasting the worst storm since Michael Fish almost wrecked his career back in the 80's, it was with some trepidation we headed out to the Lake District for a mini break which had been booked since August. However, luckily for us and perhaps unsurprisingly, the storm turned out to be more of a  storm in a teacup (though it was wet, VERY wet). The biggest surprise of the break was how great Elin was and how tolerant of the bad weather, the change of surroundings, and being away from home in general. Don't get me wrong, she wasn't a fan of her buggy. But she was able to manage it for short periods. All other times, she tolerated the pouch/carrier brilliantly! This combination enabled us to spend a wonderful day going over from Bowness to Ambleside on the boat and having a leisurely stroll around the shops there. The rain lashed us and I worried about how this would affect Elin, I thought it might dis-orientate her but she seemed to relish the new sounds and sights and general assault on her senses! It was lovely, to be taking our time, with a happy Elin, like the other wrapped-up families huddling in the doors of cafes and shops.  We stopped for a re-fuel during one particular downpour and Elin expressed her distaste at the situation by weeing all over Daddy's knee! (Haha result, I had just passed her over to him. She knows which side her bread is buttered!) So off I trotted with her to the disabled/baby changing. Turns out it was less disabled and more baby. Elin has just become too big to fit on one of those fold down baby changing stations. The only  concession I could see to the disabled was extra room and a handrail. Luckily I carry a special sheet for occasions like this but never really had to use it. I really didnt enjoy changing Elin on the floor of the toilet, but there was nowhere else to do it. A full change of clothes was needed too- not easy. Thankfully she is still small enough to pick up from a lying on the floor position. But it kind of hit me, rather ridiculously I guess for the first time, that when she is bigger these things will have to be meticulously planned, that you would have to be sure anywhere you were going had a full range of disabled facilities, not just wheelchair accessibility. (Our local shopping area has a really good one thankfully) It's probably fairly easily worked out, it's just something I hadn't considered. Hmm. Stick it on the back burner for another day. In the meantime I am just grateful we had such a lovely break and most importantly of all that Elin enjoyed it. I was so proud of her. The last time she was there, she was an embryo inside my tummy right at the start of life and we had no idea what lay ahead. We couldn't know back then that our amazing daughter's life would certainly bring plenty of storms, but definitely and undoubtedly more precious and beautiful rainbows than rain, any day of the week. Right there with you, Dolly ;-)

Elin sneaking around on Daddy's back! Cheeky!

Brrr. Lake Windermere.

Elin loves (fake) fur!

Not sure about this boat thingy, Mummy!

Ahh dry land, that's better!

Thursday, 24 October 2013

My Pumpkin

My Pumpkin made a Pumpkin at school today with her super special helpers and teachers! She is pretty chuffed with it as you can see.
Happy half term everyone- it's been a long time coming! 

Sunday, 20 October 2013

Cos you gotta have faith..

Not being of a particularly religious persuasion I found myself crying at Songs of Praise today. Yup, I like a bit of Songs Of Praise! Think it reminds me of being a child and that Sunday cosy feeling and the hymns sound nice and remind me of my happy school days! Plus Elin likes music and we watch it together. (Just don't tell anyone we watch it ok? It will totally ruin our street cred).  Anyway this guy was talking about his faith and how he was on the streets and an alcoholic. Then he was saved by a Christian group and his faith has pulled him through. It was so moving to hear him speak and especially how he had turned his life around through his beliefs. Then another lady told her story of how she was a single mother with four children in a new city and feeling alone, and her faith pulled her through. Very emotional. But ultimately I have to admit to feeling something akin to jealousy. How wonderful it must be, to have such unwavering faith in something? Even when things are going horribly wrong for you, to know that this is a pre-designed path and that you are meant to be on it, and everything will turn out ok....and if it doesn't, you will have the strength to deal with it.  It must be such a comfort and it's a comfort that can be definitely missing from your life when you have a child balanced procariously on the edge of good health all the time. I am not about to become hugely religious. But it got me thinking. All those times people tell you that 'God doesn't choose parents who can't cope, that's why he sent Elin to you' (and you want to punch them in the mouth, hard)..that's just what they believe. That there is a plan for everything and everyone. I can totally see the appeal, because a lot of this journey is a struggle to understand, and a repeat of the question circling in your head...why? why? why??That is a question that fades with time but that I really hope to lay to rest for good one day. Although, for the time being I cannot put my faith in the God I prayed to throughout pregnancy for 'everything to be ok with the baby' , i will believe instead in friendships, family, and love. For now, that will be the faith that pulls me through, as we are lucky because thanks to those that surround us, it is a faith that never wavers.

Friday, 11 October 2013

Feeling better

It's been a loooooong time coming but*tentatively touches wood* Elin is feeling better! After my last post she actually ended up getting a bit worse, so we have ended up with the second week of illness for poor Elin and an admission to Children's Ward. Luckily it seemed to sort her out and the Drake household is holding it's breath and hoping that is truly the end of it. Not seeing this smile every day has been thoroughly depressing and not a situation I want to repeat anytime soon. Just got to beef her up again now after the self induced diet! The supermodel waif look doesn't really suit our Elin :-)


Sunday, 6 October 2013

Poorly days!

The photo says it all! Elin has had almost a week off school- unheard of! An exploding bottom and some very nasty facial viral cold-sore type things have meant she has needed to stay at home. She has been completely lethargic and drowsy and basically has been lying around being cuddled all day like a little lop eared rabbit! A visit to the ward on Friday reassured me that there is nothing sinister going on- it would seem her body is reacting to the antibiotics she had a fortnight ago (something to do with good and bad bacteria. Ashamed to admit he lost me a bit in his scientific explanations. This is because he talks very quietly and quickly and is nothing, I repeat nothing to do with the fact that he is the most gorgeous doctor you could ever wish to meet- I'm talking swooning/ooh Mr Darcy/very difficult to concentrate gorgeous!) Doctor Darcy prescribed yakkult!! So far it has worked and the exploding bottom has disappeared but the sores on her face (cheek, ear and lip) are making her look like she has some sort of biblical plague! They have started to yellow and crust over (sorry) but yes, she still looks like she has leprosy. I think based on this she may have to have tomorrow off too - I hate it when she has to miss school but she looks bubonically infectious (even though she isnt).I know school hate it too and will be missing her! The only saving grace is that I don't think they are sore for her. Let's hope she can return on Tuesday and normal service will again resume for this little household and our baby bunny xxxx


Friday, 4 October 2013

Show me the gas and air...

I am late writing this post, I got way-layed! Nevertheless it was an important moment and I need to share it! A few weeks ago a lovely acquaintance of mine asked me to write a piece for her blog. This is a blog I have long admired and moreover, it was a blog for 'ordinary' Mummy's i.e no 'disability' focus. The author, Clemmie, is a midwife and Mummy of two and the blog features, among other things, a weekly 'birth story' . I was asked if I would mind submitting Elin's birth story and a bit about what it was like bringing up a child with disabilities. I was so pleased to be asked and I jumped at the chance. I was just so chuffed that the author of this amazing (and popular!) blog would choose to include a story like mine, which in terms of birth stories did not really end happily (in the 'ordinary' sense). Sometimes, I can feel very left out when people, inevitably and in various random situations,  discuss their birth stories. It's a kind of rite of passage, isn't it, for women. A common theme, something to laugh about and share. It's a bit like being in a club. Those who have not been through it can never know what it's like or even begin to imagine. It unifies Mothers everywhere, from discussing how helpful (or not) your partner was to the more gruesome tales of numbers of stitches and hours spent pushing. But these stories, they always end with a laugh or a wry smile, because (almost always) it turned out ok. The story had a good ending. Everybody lived happily ever after. My story is different and thus not really appropriate for light-hearted situations. It can be a bit of a conversation stopper, or more so- something I don't want to get into to fear of bringing the atmosphere down. So when Clemmie asked me to write MY story, for her blog which is being read by a lot of Mummy's but also pregnant ladies, I felt an overwhelming sense of gratitude that someone was including us in the whole 'birth story' situation. I was also terrified about writing a really naff piece, or a piece that would upset or worry and pregnant ladies reading it (what happened to Elin happens in about one in 1,200 births- stats which are still not low enough in my opinion). Also, I didn't really know what to include. Truth be told I could write a book about the first four weeks after Elin was born, such was the magnitude of what was happening and the amount of ups and downs. Anyway, I wrote what I could, from the heart, and Clemmie was kind enough to publish it on her wonderful blog. I was humbled to learn that she had many wonderful responses to it and I have gained a few more followers in the process, too. So, if you are a fan of blogs, follow this one. Clemmie gave me a chance to feel like our story was nothing to hide away and it meant a huge amount to me. Also- it's a  bloody good blog :-) P.S If you want to read my post, just scroll down the home page until you find it. .

Tuesday, 1 October 2013

The kindness of strangers.....

It's in the little girl in the waiting room wearing the same dress as Elin, in the same size, joyfully chattering away and showing us  her new shoes and showing Elin how their dresses match though she gets no response.
It's in the consideration of the doctor asking Elin which sticker she would like for 'being brave' even though she knows she cannot answer, and I will answer for her (the penguin one please, we like penguins)
It's in the face of the balloon man making a flower for Elin as we pass by, making it pink, because she is a girl and handing it to me with a smile when she does not reach out to take it from him
It's in the cheery pat on the head the bus driver gives Elin every morning and the greeting 'Alright Chicken, ready for school?' never disuaded by her silent gaze
It's in glances in the coffee shop, the desperation not to stare, the smiles directed our way, the universal 'bless her' sound 'awwww'
It's in the grandma in Marks and Spencers who I have never seen before or since who touches my arm as she stands next to Elin's wheelchair and says 'you're doing a wonderful job you know'
It's in the shop assistant who let's me sit on a display chair because Elin is crying and needs to come out of her buggy and wraps my gifts super-fast and gives me two free carrier bags for all the other stuff we're trying to shove under the buggy so we can manage a bit easier
It's in the traffic warden who doesn't punish us even though I forgot the blue badge
It's in the comments from friends of friends on a video I posted online of a small achievement of Elin's, they think it's 'incredible' and 'awesome' and 'wonderful'
It's in the Tesco cashier who saw us in the paper regarding rights of the disabled and tells us to 'keep fighting, good for you!'
It's everywhere,
Love (it's all around you...)
And it's amazing

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