The Family

Brit Mums Live

Saturday, 5 July 2014

Its simple?

When Ellis started playgroup when he was two he made a friend called 'Max'. The two of them got on really well and played like normal kids do. As time went on Max started to struggle to move his limbs and soon went from a stick to a frame to a wheelchair all before they started school.

It turned out that Max had musclular atrophy an uncurable muscle wasting disease. But Ellis and Max didnt know they just carried on playing adapting it so they could both carry on. 

Through primary and high school they ended up in the same class and Ellis helps Max if he needs anything. The years have gone by and when Ellis isnt gigging he will spend the night at Max's house. 
They have an amazing house which is very well adapted to their needs. I say their needs as Max's younger brother was also diagnosed with the same disease a few years after Max. 

Ellis was shouted at this week at school by a teacher for being cruel to Max. Max has a bionic arm aid that he uses to help him reach food by pressing it bit by bit with the finger of his other hand and Ellis had pushed the arm back to the begining stopping Max from getting his food. 
Yes it sounds cruel to an outsider, good job they didnt see him take the battery out of his wheelchair or put Max's arms on the outside of his chair so he can't put them back in. And writing messages on Max's arm to his mum like ' Jane, Max has been a naughty boy at school today' knowing Max cant wash it off. Or the other annoying things that he does to Max. Sometimes Jane writes a message back to Ellis too haha. 

But they also dont see Max running over Ellis feet with his chair, or calling him close to whisper then screaming in his ear or when Ellis passes him something, grabbing his hands and nipping or scratching all the skin off his hands with his long fingernails. 

The thing is Max loves Ellis for all this. 
Ellis sees Max. 
Not Max in the wheelchair. 
Of course Max nearly cried with laughter that Ellis was getting told off and tried his upmost to make it worst. Thats the relationship they have.
Yes Max has lots of friends but they see Max in the wheelchair who cant move and treat him like he has a disability. He doesnt need reminding of it, he lives with it everyday!
 So Ellis treats him the same as he would all his friends. He is Max. Simple as that. 

I'm so really proud of Ellis for how he is with Max and Max tells Ellis how he wishes all his friends were like him instead of making him feel like they are his carers. 

When I go to pick Ellis up from Max's house I try to do the same and chat to his mum ( who is the most amazing person I have ever met) she is so positive and inspiring.  I try to be on the outside,  but inside I'm screaming at the sadness of having two beautiful children both with such cruel disease.
I really dont know how she copes. But she does! And she does it amazingly better than I ever could.

I simply need to take a leaf of of Jane and Ellis's books. 
I will give it a good try! 

Lisa xx

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