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 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.