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…

Goodbye 2011

In the words of a well known Coldplay song,

“Nobody said it was easy; no one ever said it would be this hard ...”

I genuinely never realised how difficult parenting a child with special needs could be.  I’d never really thought about it before to be honest.  Not really.  But 2011 brought some horrendous challenges, some difficult conversations, some crushing realisations and some terrifying ordeals, none of which could I have anticipated when in September 2010 Hugh was sent for ‘further tests’ to determine why his head was failing to grow.  Even as the harsh reality started to dawn on me, towards the end of 2010, my biggest worry was that H and Cheeky would probably have to go to different schools!  It’s ridiculous to think now that once that had been the worst that could happen.

2011 opened up a whole new world of special needs to me that I didn’t know existed.  I became familiar with words I’d never used before – life threatening, life limiting, hospice.  I discovered what it is to genuinely fear for your child’s life.  Not just once, not even twice but countless times.  I developed a new morning mantra that I say each morning as I open my eyes (that’s if I’ve managed any sleep that is), “please still be breathing, please be alive, please still be breathing, please be alive ...” – who knew it was possible to live like this?  Who knew there’d be times you could resuscitate your own child, silently begging God “please not now, I’m not ready, not like this” and when the panic is over you could just carry on?  I genuinely never knew it was possible to live and function in such a heightened state of fear, that it would eventually become normal.

But despite this, I am determined not to look back on 2011 as the worst year ever.  It is depressing and just encourages you to focus on the bad times.  And in all honesty 2012 probably won’t be that much better and could potentially be a whole lot worse.  I had some wonderful times in 2011, a day trip as a family to the local ‘pretend’ beach, H’s first birthday party – a great big pool party with all our friends and family, a lovely family Christmas that wasn’t spent in hospital.  And these are just the big things – there’s the smaller but just as significant times – the cuddles in bed in the morning with H and Cheeky, watching Little H and Cheeky in the bath or in the garden together, carving pumpkins, the look of wonder on H’s face at the Christmas lights.  And the smiles!  The truly wonderful, light-up the room smiles that would melt your heart!  2011 was full of them too!

And my hopes and resolutions for the new year?  For 2012 I’m not going to hope for answers or cures or less time in hospital (though all of the above would be nice).  I’m going to try and take it a day at a time.  I’ll appreciate the good days when we have them and try to worry less about the future. 

Thank you to all the wonderful people who have helped to make 2011 less frightening and less isolating and for giving me the strength and the hope to face 2012 head on.

Comments

  1. A beautiful post. So many challenges but you face them head-on with such grace & positivity. Not only are you faced with the knowledge that your child has special needs but also that he has a potentially life-limiting condition. Wishing you a far less challenging 2012 xx

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  2. You are one amazing mum, you sound so strong, despite the enormous challenges and heartache that you have faced, wishing you the very best for 2012 xx

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  3. Thank you Jane and Blue Sky for reading and commenting. I don't always feel strong but I work hard to try and stay as positive as possible -some days that's easier than others. It helps to have people like you and my online friends to turn to when things do get on top of me. Thank you all. X x

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