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…

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Low fat.
Keep shut.
Danger.
This way up.

Press here.
Give way.
50 kcals.
For sale.

New and improved.
Wide load.
Contains nuts.
Road closed.

Labels to inform and labels to warn.
Labels to entice and labels to advise.
Labels to categorise and group with the same,
Labels to classify and to explain.




Profoundly disabled.



Life limited.



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Comments

  1. A tag for H, gorgeous. A badge for you, courageous. A title for all of you, The Incredibles x

    ReplyDelete
  2. Very moving and profound. Did you write it?
    (SEN Editor for Britmums)

    ps... you have Captcha enabled :/

    ReplyDelete
  3. The Incredibles!!! Cheers Areyoukiddingney - I love it!

    Hayley - thanks, yes, I did write it. Not sure about Captcha enabled - isn't it a handy (albeit irritating) way of stopping spammers. Hadn't really looked in to alternatives.

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