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…

Super Brothers


Me and my brother are Super Heroes!


He wears a special Super Hero suit under his clothes, just like Superman.

I don’t need one.  But sometimes, when it’s cold, I wear a vest.

He has a special tube that goes straight into his tummy to give him food and Super Hero Strength.

I eat my dinner to make me Super Strong.  My favourite food is burger and chips.




He has a cool chair with wheels on so he can whizz around and I can run Super Fast.  Together we fight the baddies.



He doesn’t need to talk.  He uses the power of his mind to tell you what he’s thinking.  I can understand him the best though, because he’s my brother.

He tells me jokes that no-one else can hear and I tell him funny stories.



At night, when everyone is sleeping, he flies me all the way to the moon and we watch the aliens playing and catch shooting stars.  Then he flies me all the way back home again.



My brother is the best Super Hero in the whole wide world.

He’s the best brother too.

I love him all the way up to the moon and the stars and all the way back down again.


Cheeky (age 4) and I wrote this post together for Children's Hospice Week (26th April - 3rd May 2013).  Children's Hospice Week is the UK's only awareness and fundraising week for children with life-limiting conditions and the services, like children's hospices, that support them. This year, the focus is on siblings.  You can find out more by visiting the Together for Short Lives Website.



Comments

  1. cheeky loves his brother! it's obvious. I think that our little ones are very lucky to have superhero siblings who love them to the stars and back. this is a great post, together they can take on anything and win xx

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  2. I love your post and the pictures bring your words to life. Well done.

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  3. Thank you Petra.

    They are indeed very lucky to have superhero siblings h0peful mummy. I'm glad it comes across how much cheeky loves H- he really does adore him.

    Thanks bright side of life. I'm not much of an artist to be honest but wanted to try something a bit different.

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  4. I love this it's fab xx

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  5. Aw, how lovely and what a wonderful little book it would make for ALL children to read. xx

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  6. Thanks Michelle. I was trying to make it into a little book for Cheeky to keep but haven't found an online publishing tool I'm happy with yet. Lots of photo books but the text ones seem to be aimed at larger books.

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