Living with Cerebral Palsy 🍋🍋

Tuesday, 31 January 2017

Tearing down the wall...

It would appear with recent events that the world is about to get a whole lot more divided and segregated and that for the leader of the free world, hate really does trump love (pun entirely intended). The wall is going up, the borders are shutting down. Globally it's been a pretty thoroughly depressing January and I have no idea where it will end. Ignorance coupled with arrogance is such a deadly combination. But I won't start- I know nobody comes to this blog for political opinion! Luckily I experienced a little rainbow on another grisly day (both weather and news-wise) when I visited Elin's school today.  You see even Elin knows the best thing about barriers is when they come down :-) :-) If you'll pardon the extended metaphor, Elin has been knocking down a little wall lately and by doing so casually smashing her school targets -not to mention our expectations-yet again.
This video is so amazing I had to share it immediately. The game she is playing with her support worker is knocking down a tower of brightly coloured bricks (which have bells inside so she can also hear them) I know it might not seem like a lot. But it is pretty huge. The concentration Elin displays, along with the listening and looking skills are so clever! Then there is the fact that she is able to tie this all together and use her motor control skills to achieve her goal. She doesn't even stop there, she perseveres until she has demolished the very last brick and her expression clearly betrays her joy and that she is completely aware of her achievement. How I wish I could show video's like this to the Neurologist who told us when she was four months old that she'd 'never be a thinking person'.
I challenge you to watch this without smiling... :-)

Pretty good, no? Credit to her awesome Teachers and her Support Worker for their excellent planning, patience and tireless encouragement in extending Elin's abilities each and every day, which allow her to achieve in this way. As if that wasn't enough, after all that hard work today Elin continued to work on her targets by 'showing an interest in her own reflection'. Her focus is stimulated in the wonderful dark-room resource they have at her school, by using UV lights, brightly coloured wigs for her and in this case, flashing bunny ears. All of which make it easier for her to find her own reflection, which she clearly does on more than one occasion. No video this time but some pretty gorgeous photographs..

Here's looking at you, kid......

Tuesday, 24 January 2017

Forget Me Not

Yesterday was six years since Elin lost one of her little friends and we lost any remaining belief we had at the time in life being fair.
Harvey was 12 months older than Elin. He was the first other child I met who had severe Cerebral Palsy following Elin's birth. The hospital's 'Home Advisory Service' put me us in touch with his family when Elin was tiny. They thought it would help.
At first, it didn't.
I was frightened. I was scared of what I saw when I first met Harvey. He was unlike any one year old I had ever seen, his limbs were awkward, he struggled to feed, he was silent. I had a glimpse of our future and I wasn't ready to accept that version of what was to come. It was very early on and maybe I wasn't ready. I can't believe it now, of course, but I cried when I got home. I'm ashamed of this fact, but it's true. I was terrified.
But his Mummy came to visit again. She talked so much sense and understood what I was going through in a way nobody else I'd met ever had. She put Harvey on my knee. Didn't ask, just put him there. I liked this. It hadn't occurred to her that I might not want to hold him , why would it? She was Harvey's champion, pure and simple. I noticed she talked to Harvey all the time. I noticed he was listening. I cuddled him tight.  He smiled at me.
Wow. Anyone who knew Harvey will never forget his mega-watt smile. It dazzled me. He laughed, I laughed too. Paul met him for the first time and  thought he was amazing. He couldn't understand what I had been scared of when I'd first met him. I couldn't really remember now either. I started to realise that there was so much more to this gorgeous little boy than I ever could have imagined the first time I saw him. How stupid was I, when I had a baby Elin in a car seat at my feet, to judge any child by a fleeting first impression. I would hate for anyone to do that Elin, yet there I had been. I guess emotions sometimes overrule the head. I was thoroughly ashamed and will always be, of how I felt that first day we met.
Harvey became the light in our darkness. He helped us to heal when we thought we were broken forever.
That smile helped us to make sense of our strange new world.
Then on the 23rd January 2011,  Elin was spending the afternoon at school - only her second week there. She was doing afternoon sessions to get used to it and would then swap to morning sessions whilst I was at work. (She would be picked up by the bus Harvey would be on, I was so glad she'd have a transport buddy. I made a book about her for her Teachers and in it I put a picture of her and Harvey and wrote "Harvey is my boyfriend") The phone rang. My heart plummeted in case it was school, what if something was wrong with Elin? It wasn't. It was far, far worse.
I still can't believe Harvey isn't with us. We keep his photograph in Elin's room and look at it every single day. Elin has lost other little friends since that day. It never gets any easier (and I'm glad it doesn't). But Harvey has to remain special to us, for being the reason I wasn't frightened anymore. For being the crack of light in the shadows we lived in during those early days.
On that day, when Elin lost her best friend, the Universe gained the brightest of stars.
Bless you Harvey, for all you were, are, and always will be to us, without ever even knowing it.


Thursday, 19 January 2017

Post envy

I stumbled across another Mummy's blog today. One of her posts has been fairly widely shared on social media and it's not difficult to see why. I just had to share it on my blog. I desperately wish I had written it and even for a moment considered stealing the premise and re-hashing it in my own words. However, I could never have written such an eloquent and articulate post on this emotionally complex subject and I think you should read the original in it's full simple, honest, concise glory. Not only is it a very moving and engaging article but it's astonishingly accurate. At least in my view.
If I had a pound for each time I have thought this..
"Please don't praise me for loving my child with a disability"


Saturday, 7 January 2017

Don't look back in anger...

I love old photographs. I realise this is hardly revolutionary, most people love old photographs. Nothing can quite give you the warm, fuzzy feeling that an old photograph can. It can remind you of a great time you once had, or of someone you loved that is no longer here. It can present you with moments you don't remember as a child, or moments you do. Places you lived in, people you knew. It's hardly surprising that when faced with a question of what objects they would run to save if their house was on fire, most people say photo albums. Photographs record the big moments forever..birthdays, christmas, holidays. We want to treasure them and keep them to took at when we are old. They also record the small moments. The forgotten and seemingly mundane. But not always the insignificant....
Yesterday I saw an old photograph that did not give me a warm fuzzy feeling, it made me sad. I should point out I do not remember being sad when it was taken, aside from the general sadness that coated absolutely everything at that time of our lives in a permanent thin film of disbelief and horror. I was enjoying time with friends and family, I remember it clearly. I know Elin had not slept again the night before, but that she was beginning to improve following her giant operation at Alder Hey. So when the photograph was taken things were, by enlarge, probably looking up for us at the time. I think I was  feeling more hopeful and positive than I had been in a while.
But when I look at the photograph I still see sadness and desperation in my eyes. It surprises me that I look really young. I suppose I was young, I was 25 when I had her. I didn't feel young at the time. I'm
pretty skinny (by my standards at least) from what must be the effects of constant worry (every cloud!!!) Worse, I see Elin. She looks sad too. She was- she cried a lot that day, I remember. She cried a lot every day at that age. She looks so stiff from the yet undiagnosed dystonia and the uncontrolled seizures we were still grappling with. I was so proud of her and I look back and she just looks so poorly and upset. I have to face up to the fact that she was. The first six months of her life were pretty miserable. For all of us. Many of my friends have had babies since I had Elin. I watch the purely magical world they arrive in following the birth and that magic is as foreign to me as it is to a childless person. We lived in permanent shock. It was like living in a horror story, where you just have to get up each day and keep living life as if everything is ok. The photo unwittingly takes me back to that time. I cry when I see it, for everything we went through and everything we lost and were grieving for. Mostly I cry for Elin. Where was our magic??
But then, looking back is ultimately empowering. How can you ever know how far you have come, if you never look back? Boy, have we come a long way with our amazing girl. This time is alien to us now. Sometimes I cry for what is past, sometimes  I cry for the future, but never for our present. The baby in the picture, stiff, unhappy, confused by the world, regularly in pain and simply unable to smile (it was ten months agonising months before she did) is in that foreign land of times gone by. How different she is now.  So I will always steal myself and be brave and stare these photo's in the face. They can't hurt me. She is the happiest girl in the world. She smiles and laughs constantly and brings so much joy to the lives of everyone who knows her.
It's a miracle and so is she.

It turns out our magical moments just arrived a little late :-) 
never stop believing, folks. Happy weekend xxxx

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