Amy made it to her school disco, which was fantastic.
She really wanted to go even though she was hurting and very sore.
She put on her brave face and tried to have fun with her school friends.
I'm glad she had a fairly good time but sadly she ended up near enough unable to move for the following 3 days!!
We are at the stage of having good and bad days.
We seem to end up with more bad ones at the moment but always thankful for the good ones in between.
Amy is trying so hard to go into school, I know this is very draining for her when she is in so much discomfort and pain.
She always tries to go in with that beautiful smile of hers but I can see just tucked behind her lovely big blue eyes, the pain that she is in.
I just wish I could make it better for her
My baby is hurting and there is nothing I can do
I wish I could make it better and make her dreams come true
She doesn't wish for make up, that girls her age all like
She doesn't ask for expensive gifts, things like jewellery or a bike
Her daily wish is always to be as normal as can be
And go a day without being sore, itchy and to just sit comfortably
She wishes the pain would go away and for her skin to just be clear
To soak in a bath tub and to run around and cheer
But sadly at the moment her dreams seem far away
And the itchy and discomfort is her life everyday.
Each day we know we’re closer and never give up hope
But she still struggles bravely finding it hard to cope
We thank the topical steroids that the doctors passed our way
With instructions on to use them each and every single day.
No mention of the addiction that the body may endure
And the fact a long withdrawal would be her only cure.
We’re trying to raise awareness and spread the word about
Doctors should be more cautious with what they’re handing out!