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…

A Special Holiday - Making Every Moment Count


It was our first family holiday after a time when we thought we'd never have a holiday again. 

In fact it was our first family holiday shortly after a time when we thought we'd never be happy again. 

It took some persuading to make us go.

We were scared, really scared. 

We'd been told our son would die in childhood. At one point he wasn't expected to make his second birthday. 

And when things started to get better we were too scared to believe it lest the walls came crashing back down.

We'd been living on a knife edge for so long.

We recognised the overwhelming need to make happy family memories but were terrified of the consequences of our ‘risky’ actions. We were torn between wanting to make every moment count and the fear of something catastrophic happening while we were away from home. 

But our wonderful palliative care nurse coaxed and persuaded. The charity React provided us with a lovely little caravan by the sea. We went prepared with notes and documents and back up plans; details of local hospitals and ambulance response times, a car packed with life saving medicine and medical equipment. 

That holiday was magical; a week in Wales by the sea.  The sun shone every day; there wasn’t a single cloud in the sky.

We laughed, we played, we relaxed, we had fun.

We made memories we can cherish forever.

#momentscount






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This post has been written to mark Children’s Hospice Week (11-17th May) in conjunctions with the charity Together for Short Lives.  This year’s theme is about ‘Making Every Moment Count’ focusing on how precious time is for families by capturing moments in time.

Facts about hospice care & life limited children:
·         Most children need round the clock care – 24 hours a day, seven days a week
·         Families need support so they can make the most of every moment together
·         There are 53 children’s hospice services in the UK providing a lifeline for families
·         Children’s hospices are bright and happy places focussing on helping families make the most of every moment
·         Children’s hospices are all charities that rely on public support

Our local hospice has been a huge source of support for us.  You can find out more about Acorns and the work they do here: Acorns Children's Hospice.

Get involved:
You too can take part. A social media campaign will run throughout the week encouraging people to share the moments that matter to them by posting pictures, videos and comments on Twitter and Facebook, using #momentscount. Your moment could be a wedding, a celebration, a party, with friends and family or a career highlight... anything that captures a moment in your life that you would like to share.

So come on – share some of your precious moments using #momentscount too.




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