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…

The sound of a breaking heart

Do you know what sound your heart makes when it is being ripped out? 

Mine wails. 

It’s a guttural sound; primal almost. 

Initially disembodied; until eventually you realise that sound is coming from you. 

From me.

I found that out today. 

I took Little H for respite today.  A daycare session, a chance for us both to chill out, relax and have a splash in the hydrotherapy pool.  I wanted time to read, H I think was looking forward to being fussed and cuddled and stroked by the nurses.

And that happened.  And it was lovely.

But something else happened too.  Something that caught me unaware.  Something that punched me full on in the stomach, winding  me, leaving me gasping for breath.  Something that reminded me that I’m using a “Hospice”. 

Many people reading will already know how worried I am about the future, but for the most part I bury those thoughts, or rather bury my head in the proverbial sand.  When things are well, I can relatively easily go about my day to day life without thinking about, or more specifically worrying about, ‘the future’.  I look at Little H and I see a smiley beautiful happy little boy and I know the doctors, consultants, specialists ... they are all WRONG! 

Mostly, that works for me.  That’s how I get through day to day.  I’m not a martyr.  I’m not amazing.  I’m not strong.  I’m a mum.  That’s it.  And a lot of the time I am in denial.

And sometimes, every so often, I am caught unawares, and reality likes to give me a cold, hard, slap around the face. 

Like the time our Paediatrician took us to a separate room to ‘talk’ while H was in HDU and explained how serious his type of epilepsy was.

Like the time I had to resuscitate H on the side of a dual carriageway.

Like the time I read a form in his files (serves me bloody right) that said, clearly printed in black and white: LIFE LIMITED AND LIFE THREATENED.

Like today.

When I sat eating dinner next to a lady planning her son’s funeral.

This post is written as part of the #definenormal blogging challenge courtesy of the lovely RenataBplus3 from Just bring the chocolate

Why not join in?  Define your 'normal' and get a fancy badge, like the one on the right, to add to your blog.

Don't forget to check out the other #definenormal posts too.


  1. Sometimes, a comment on a post is not enough... sometimes, despite understanding entirely what is written and feeling it deep inside you, you can't find the right words x

  2. No words. This post just put my big moany one in perspective xxx

  3. Thanks Katie, cjc and blue sky for reading and commenting. I do appreciate it. Your virtual hugs and knowing you are thinking of us and that you understand helps. X x

  4. Get that 'when it hits you' feeling but 'life limited' & 'hospice' are in a whole different arena. A virtual hug from me too - for what it's worth xx

  5. My stomach knotted when reading your blog. Not usual for me to be lost for words. Read your blogs and often think about how you are. Take care xx

  6. First blog of yours I've read. There are no words. Sending you a virtual hug around you and your boys whether you want it or not.

  7. oh my, I dont know what words to say but sending love

  8. Jane, Nanny Anne, Niamney B, Sally and Jane (@northern Mum)I really do appreciate your kind wishes and virtual hugs. You can never have too many hugs xxxxx


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