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“I am only one,

But still I am one.

I cannot do everything,

But still I can do something;

And because I cannot do everything,

I will not refuse to do the something that I can do.”

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'WHAT YOU DON'T SEE'

What you see vs what you don't...

 

This is what you see, Hayley smiling and happy and making the most of the hand life has dealt her. She truly is amazing and does just get on with it, with a smile on her face most of the time.

 

However...

 

What you don't see is her crying and sobbing for half an hour to an hour at a time before her injections because they hurt her so much and she's scared of the pain.

 

What you don't see is her kicking and screaming as I try to hold her so that the doctors can check her with a stethoscope and feel her stomach, because she's been traumatised by it all.

 

What you don't see is her reluctance and fight against having her observations done at times, simply because she's had enough or just wants to get some sleep.

 

What you don't see is her feeling sick and leaning over a sick bowl, holding her ng tube firmly in place for fear of it falling out and her needing a new one... again.

 

What you don't see is the anxiety and discomfort she feels with every dressing change.

What you don't see is her crying and cuddling tightly in to us before having "sleepy medicine" before each general anaesthetic, or the way it makes her feel when she wakes up from it.

 

What you don't see are the tears she cries everytime we have to leave Daddy and Jessica for days or weeks at a time for hospital stays, or the way she cries during those stays because she just wants to go home.

 

What you don't see is her refusing cuddles because she feels so rubbish that being cuddled only makes her feel worse, but at the same time she's crying for me to help her.

 

There is so much more to all of this than meets the eye. The above doesn't even scratch the surface.

 

Hayley has been through so much, and missed out on so much. She can't even remember when she got sick, it's just become a way of life for her. It breaks my heart that recently she's been asking why she got sick, and I don't have any answers. She said today that she doesn't want any of this anymore. I just wish I could wave a magic wand and make her, and all the other innocent children fighting this horrible disease, better. I don't though, so we all just have to carry on fighting, one day at a time xxx

 

Written by Hayley's mum, Zoe:

Hayley March 10th 2017