Living with Cerebral Palsy 🍋🍋

Tuesday, 25 October 2016

No thanks.

Today is a dreary day Autumnal day. I love Autumn but it's definitely better in the sunshine. It's kind of misty and foreboding otherwise. It reminds me, with the rusty coloured trees and grey streets below the ashen sky of the film 'Halloween'. I feel like there should be a solitary child meandering down the road with a red painted wooden cart, the wheels squeaking eerily as you wonder anxiously what lies in wait. That's what today is like. The dark mood is entirely apt, because we had some bad news today- we discovered that somebody we know had passed away. It was sudden, and unfair. This was not someone we knew well, but someone very involved in Elin's daily life. Someone who showed her kindness, who held her hand and stroked her cheek and sang to her when she needed it. Someone who made her feel safe. One of life's good people. The news slapped my face like the sharp October wind. Life is unbearably cruel. Life is short. It's hard. Live each day being thankful for everything you have.
Something I'm finding difficult to do this week.
Thanksgiving is approaching and I am glad I'm not American and I don't have to give thanks. I'm not feeling thankful. I should be. This makes it worse. Elin is still doing brilliantly. She is having a lovely half term. Thank you, for that. But I do not feel thankful. I am raging against the world today. Nothing seems fair.
A million things, upsetting, frustrating, annoying.
A million tiny things.
And one big thing. 
The fading light fell through the trees, dappling the carpet of crisp leaves beneath my feet today as I pushed Elin, alone, around the park. It was beautiful and calming. I needed air. Elin seemed to understand and sat perfectly in her chair as she gazed along with me at the world passing us by. We had a cuddle on a bench and I whispered all my secrets to her and told her life wasn't fair and what happened to her was not fair and I was sorry, and we and took in the stunning scenery together. I was glad and I was grateful she was there with me, and well. I thought of the awful news this morning and of a family grieving. I tried to swallow my almost inexplicable rage and give thanks after all. To the trees, to the air, to the world. To Elin, for her survival, without which my life would have been an endless cycle of damp and angry Autumnal days forevermore. And I almost managed it. Almost.
Autumn days when the grass is jewelled and the silk inside a chestnut shell,
Jet planes meeting in the air to be re-fuelled and the things I love so well..
So I mustn't forget.
No, I mustn't forget.
To say a great big thank you..
I mustn't forget.


Tuesday, 11 October 2016

A Year Out

Today, the 11th October, is a special day in the Drake household. Today marks one whole glorious year since Elin was last admitted to hospital. That is the first year of her life that has been completely hospital-free. 365 amazing days. In your face Cerebral Palsy! Also, in your face Alder Hey Neurologist (who insisted to us after her newborn brain scan that she would yo-yo in and out of hospital so regularly throughout her life that we wouldn't know which way was up). IN. YOUR. FACE.
Being admitted to hospital isn't always a big deal. Not when you're used to it. You know the routine. You know the doctors. You love the Nurses (plus Nurses breakfast toast is the best). You've been in every cube, you could re-paint the colourful wall decorations yourself from memory alone. It's so familiar. As long as Elin isn't too poorly, it's not like it's the worst thing in the world and we are forever grateful that we have the facility at all (cheers Aneurin). BUT at the same time, let's be honest, it kind of sucks. It's lonely, draining, worrying and worst of all it's really not nice for Elin. So, we have always been really pleased when we've had a long spell without making the dreaded phone call to the ward admissions. Not only is this good for family life of course but much more importantly it demonstrates just how BRILLIANTLY Elin's been doing lately.
We are so proud.
She is such a fighter. She's strong and robust and resilient and all the things those doomsday doctors prophesied she would not be. And what a demonstration of how a scan can show you a picture of a brain, but it cannot photograph the spirit.

Long may it continue.
Well done Elin :-)

On our way home last year for the last time in 52 weeks and counting

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