Having a child with special needs affects the whole family.

Having a child with additional needs changes a family.  I think you become more insular as no one can truly understand how much your life has changed.  We are not the same people, same couple, same family as we were before our special boy, Hugh, was born.  Our priorities have changed.  Our needs have changed.  Hell, even our political views have changed.  It’s not all bad though.  Yes, I am beginning to feel isolated from even my closest friends, but in turn, we have grown stronger as a couple, talk more openly and rely on each other more.

My overriding concern has always been though, the effect having a brother with special needs will have on my eldest son, Sean.  He is nearly three and I worry almost as much about his future as I do about his younger brother’s. Will he get bullied for having a brother that is so ‘different’?  Will he feel neglected because his brother demands so much care and attention?  Will he be embarrassed by a brother that can’t walk or talk?  Will he be jealous…

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 never expected that.


  1. I'm so sorry, and you know for me the comparison is with my son - when he was first diagnosed with aspergers and I thought a bit of social skills training could 'fix' things for him. I had no idea ((hugs))


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