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…

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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