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…

I wouldn't change you ... But ...

I love you with all my heart son, but if I could take away your epilepsy, I would.

I sometimes wonder who you would have been without it. Would you be sitting now? Would you be walking and talking? Maybe. Maybe not. Either way the seizures are still a hinderance in your development. I don't think I realised the damage they were doing until you lost your ability to smile. When you couldn't open your eyes and you couldn't lift your head, I thought epilepsy had taken all you'd got.

You smile all the time now, my precious child; but when you look at me with such fear in your eyes, it breaks my heart. I don't know what's happening in your brain, but I know you're terrified.  It's scaring you. I wish I could make it stop.

I'm not sure what's worse; the seizures that scare you or the ones that scare me. Seeing you go blue like that will never get any easier. Seconds stretch to  minutes, minutes feel like hours. I force the air into your lungs, breathing for you while your brain resets, praying you'll breathe again.

Epilepsy doesn't make you who you are my child; you are amazing and wonderful and beautiful and brave.

Your epilepsy defines me at times though- I am scared and frightened and angry and sad.

I love you my son.
But if I could, I would take away your epilepsy in a heartbeat.



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