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…

Seeing my son through the eyes of others

For the first six months of my youngest son’s life, I knew deep down there was something not quite right.  Family and friends tried to tell me he’d catch up, I was imagining it, he was still so young.  But I knew.  I just knew.  I made a mental note of all the things that were different about him and tried not to feel so awful and guilty for looking for the things that were wrong rather than the things that were right.

And then our worst fears were confirmed.  An MRI showed his brain was underdeveloped and the long  journey towards a diagnosis began (we’ve not reached the end of that road yet).  But finally I could stop looking for all the things that were wrong.  I wasn’t imagining it.  Now I could appreciate my son for who he was. 

We developed a new sense of normal and although I’m aware he is severely developmental delayed – probably functioning at about that of a 3-4 month old though he is one and a half – most of the time I just don’t notice.  He’s my son.  My beautiful little angel.  He is who he is.  And I love him. 

But a certain times, I’m confronted with the reality of the situation.  It makes me sad to see him through the eyes of others.  When a parent of a similar aged/sized child asks if he’s talking and walking, when an old man waves and tries to make him smile and he doesn’t even register they’re there, when he is wheeled out of an ambulance hooked up to monitors and oxygen looking sick and vulnerable.  I don’t want people looking.  I don’t want people pitying him.  I know they’re not being unkind but I just hate to see him through their eyes.  The new special needs equipment has the same effect – electric powered seating system, standing frame, bath seat.  When I see him in these, it’s as if the blinkers have been taken off and I am confronted with the stark reality that my son is different.  And that makes me sad.