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…

Normal? Isn't that just another word for boring?

Just a short and sweet one this week - yes, I know that's unusual for me!  

So as part of Renata's #definenormal bloghop, I'm thinking again about normal.  I considered sharing more insights into my not so normal life with Little H and his myriad of medical mysteries, but since he's unwell at the moment and I have a strict half-hourly schedule of saline nebulisers, oxygen giving, chest-physio-ing, administering medication of one type or another, suctioning, temperature checking, NG feeding, there just isn't the time.  So short and sweet it is.

Normal I have decided is actually just another way of saying boring.  If I have nothing interesting to say about somewhere or someone, I'd say it's/they're 'normal' or 'alright' or 'fine' (imagine these words said with a shrug and you'll get the gist).  Basically - dull, forgettable, not particularly interesting; not even interesting enough to actively like or dislike.  It's/they're not lively, entertaining, funny, clever, artistic, talkative, quiet ...[insert any adjective at all here pretty much]... they're not anything! 

So I'm not really sure I want me or my family to be normal anyway.


This post is written as part of the bloghop #definenormal.  Pop along to Just bring the chocolate to find out more, join in and get a funky badge too, just like the one on the right!  :D 


  1. Blogger hates me, I've been trying to leave a comment for ages!

    This weeks entry is short, yes (but very impressive considering all the stuff going on at home), but oooooooh so true. The world would be a dull place indeed if we were all the same. Love the pic of the baby :-)

  2. morning!
    i think that when it comes down to it, no one is normal or would want to admit to being normal. no one thinks of themselves as being boring or lifeless or forgetable - apart from in a position of despair perhaps.
    normal normality just doesn't exist full stop...
    who wants to be normal anyway?
    sometimes, actually i think that i do...
    hope all is ok with you - hourly regime sounds like hard work - hope that you are looking after yourself

  3. So True. I'd hate to be normal, average, ordinary... Dull, dull DULL! Thanks for sharing :) Hope Little H is better soon. x

  4. Well, I've found 5 minutes to check twitter and here and have a coffee - does that count as looking after yourself h0peful Mummy? Ha ha.

    Thanks for all your comments and kind wishes. He's doing OK. The set up here is a bit like HDU at the moment but if it's keeping him out of hospital I'm happy. Though I suspect I'm not getting paid enough for the double shifts! :D He does seem to be coming out the other side now though (we hope).

    And then we can resume our not-at-all-normal daily routine. Xx

  5. Yeah - who wants to me normal anyway! Short & sweet but straight to the point - I loved it! Take care x


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