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…

Videos

Hugh making his TV debut on The National Lottery, raising awareness for Swan UK and The National Lottery Good Causes.



Born this way - raising awareness about undiagnosed genetic conditions.
There's a cute pic of H in there too!  :D
  




Special Siblings - A video all about how special the siblings of children with special needs are.  
Look closely and you'll spot my two.




We are Family a video from Swan UK about the amazing work  they do supporting families with undiagnosed children like ours.




Welcome to Holland by Emily Perl Kingsley.


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