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…


How do I explain something that is beyond explanation?
How can I make sense of something that makes no sense at all?
How do I breathe when the air has been sucked from my lungs?
How can my heart beat when it has been ripped from my chest?
How can I keep living when I feel so dead inside?

The sun still rises,
The birds still sing,
The world keeps turning.

But you have gone.

And I am lost.

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For Lyla, the precious little angel that is being laid to rest tomorrow. My thoughts and prayers are with her family.  They have set up a just giving page in Lyla’s memory – you can find it here.