The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

Do they know those days are golden?


I've listened to Elbow’s ‘lippy kids’ a lot lately and it fills me with a sense of melancholy. If you've not heard it (and you should - click the link below) it’s about a man reflecting on the carefree days of youth as he watches the kids hanging around a street corner. 

“Do they know those days are golden?” he asks.

And they don't do they? We don't realise how quick the time flies, how suddenly things can change. How precious and sacred the naive innocence of youth. 

“Build a rocket boys” he urges.

Make the most of now. Grab life with both hands. For in this moment, in this moment of innocence you can achieve anything. The whole world is yours for the taking.


I am sat in town watching a group of teenagers playing table tennis on one of the many tables that have sprung up around the city, inviting passersby to stop and play for free as part of a nationwide ‘Ping’ event.  I am filled with that familiar sense of melancholy. I want to shake them and tell them to make the most of these precious care free days; to bank these memories, to remember these feelings, to appreciate how simple and uncomplicated life can be. I feel like I have been robbed of my innocence somehow, that my eyes have been opened to a cruel world that I never realised existed before. I feel real pain at that loss. I long for the days when things were simple, when my child growing up and going to school were just things I took for granted. I wish my eyes hadn't been opened and my heart scalded by the fear that one day I will lose him.


And yet conversely, these days are golden.  

I have hours and hours of video footage and photos and banked memories to remind me of these precious precious days. It remains unspoken but there in the back of my mind is the thought that one day, these memories, these photos will be all I have. No doubt then, I will want to come back in time and shake myself, remind myself how precious these days are.


Do you know these days are golden?



Comments

  1. Big, snotty tears. Lovely song, lovely mum, gorgeous boy x

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  2. Another lovely post. You write from the heart and I think your words touch the heart of everyone who reads them. xx

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  3. Thanks Areyoukiddingney and Nanny Anne . I appreciate the kind words and that you took the time to read and comment. Promise I wasn't trying to make you cry though! :D

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  4. I don't think that I can watch the video as I am welling up just reading this, I usually just squash these feelings, though to be fair I really really made the most of being young when I was :)

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