Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

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.

Comments

  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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