Living with Cerebral Palsy 🍋🍋

Saturday 13 June 2015

Stormy Weather....

Been a bit neglectful of the old blog again lately! Prompted to write this after hearing a Mum of a child like Elin declare that despite things being hard, she wouldn't change her child 'for the world'. It got me thinking, this. It always does, as I hear it often and when I do a huge, suffocating wave of guilt washes over me, You see, I'm not one of those amazing Mum's who says they wouldn't change a thing. I would. I'd change all of it, I'd change everything. I mean, I get the sentiment I really do.  I can't imagine life without Elin and I wouldn't want to live in a world where I wasn't her Mummy. But change? Yes. I would never wish to change the essence of Elin- she is a joy. But I would change her circumstances in a heartbeat. I want to see Elin run and dance and play. I want to hear Elin speak and laugh and sing. I want to share things with her as she grows up. I want Elin to have had the childhood she so richly deserved, the life that was waiting for her in those drastic, dramatic and devastating hours before she was born and it all slipped away from her. I want to be an ordinary Mummy, not a 'special' Mummy. I want an ordinary family life for all of us.  Sometimes I want it so badly I could scream with all my might into a pillow, or collapse in the middle of the supermarket. But, it wasn't to be and if I'm good at anything it's turning a negative into a positive. Elin is the most positive thing in our lives and the lives of all she touches so that part is easy. Our hearts could burst with how much we love her, how proud we are of all she has achieved and how amazing we think she is. She consumes our every waking day and she is our life.
Yet...in the middle of the night...or on a bad day......or when Elin is in pain or unhappy....or we have a stream of endless appointments ahead....everything is far from easy. I'm acutely aware that most of you with children will see our life and what happened to Elin as your worst nightmare- why wouldn't you? It's hard living the life of someone's worst nightmare. It's hard, harder than you could imagine to grip hold of the positivity and not drown in the swamp of what could have been for Elin. The life she could have had and the experiences we could have given her. How can I say I would never change her? I would give everything I own in the world, sell my soul and even relinquish my GHD hair straighteners if it meant I could go back in time to the 22nd July 2008 and wave a magic wand. Not for me, but for her. Ok- a bit for me. A tiny bit for me and for Paul. But mostly for her. But sadly, in the absence of a Tardis, this is impossible, so you have to get on. Train your brain not to think about it, which mostly, it doesn't. Only sometimes...when she's sleeping......and the life you never lived, the sliding doors you didn't make it through, the parallel universe of the other Elin's life weighs heavy on your mind and in your heart and slaps you across the face with it's vicious finality. During these times, I can't do certain things. I can't be around other little girls and their parents (something Paul finds particularly difficult). I can't go shopping, I can't think very much about anything at all. I can't fake a smile and I can't see my friends. Luckily for me, these slaps across the face do not come very often. Or maybe they do, but I can deal with them more easily now. Because ultimately, as regular blog readers will know, my overwhelming feeling regarding Elin is luck, how incredibly lucky we are to have her in our lives. She has taught us far more than we can ever teach her- how many parent's can say that? But, if Im acting weird or changing arrangements or being naggy at any point for seemingly no reason- please forgive me. I'm just waiting for the slap to stop stinging. Im holding Elin tight and I'm crying into her hair. I'm waiting for the storm to pass because it might not be a good day to dance in the rain.
But it will pass, it always does. It can't not, when you see Elin smiling up at you in her beautiful innocence. She is my reason to keep dancing. And you know what? Sometimes embracing the storm in what feels like a very black and white world means you end up unexpectedly landing in a place of colour you never knew existed in your heart.. "far far away, behind the moon and beyond the rain"..... well, you know the rest.  I love you so much Elin. The rainbow in my cloud.
Elin today. A little wild flower in the garden, waiting for a storm -pleasingly a literal storm, not a metaphorical one ;-) Have a good weekend folks. Keep dancing.
xxxxxx
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6 comments

  1. Brilliant post. I hope you ride the storm and keep dancing. I hope this raises awareness of the positives that can be enjoyed and that every family is unique #PostsFromTheHeart

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    1. Thanks so much! We have become very adept at riding the storm :-) xxx

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  2. What a beautiful little girl you have. I believe that our little ones can teach us a lot and it's understandable that you want the best for her. #PostsFromTheHeart

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    1. Thank you! Elin has certainly taught us more than we could ever know x

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  3. I hear you and I get it. On the days when Number One is consumed with anxiety, or when Number Two is screaming again and again in pain, I would give everything I own for them both to have a chance at normality. I am capable of avoiding the world for days. It doesn't mean we don't love them. We do. More than anything in the world. But sometimes, just sometimes we are allowed to wish for that parallel world where they had the chance to be the them they were meant to be, that they had had the easy life x #PostsFromTheHeart

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  4. Thanks so much lovely. This was a post from the archives for me but is still very bit as relevant today. Important not to feel guilty about having these feelings I thinkxxx

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