Since coming home from school today Daisy has been silent, not a peep.  No ‘yum yums’, ‘da’s’, ‘quack quacks’, ‘moo’s’, nothing, ………….. silent.

Her hands are a purplish red, her skin mottled, cheeks crimson, skin dry, eyes sad.

All of this is usual, its become the norm.   Due to frustrations with ‘most’ medics over the years   I don’t ‘burden them’ with Daisy any more.  Who wants to sit in a GP surgery with all the ‘sick’ patient’s judging you as you try to prevent your little cherub from sitting on someones lap, steal crisps,  push a child, push an adult, flash her boobs, flash her front bottom! ~Not me, now I just manage Daisy and all the worrying and upsetting symptoms that come as part and parcel of having her.  Not a day goes by when I don’t worry about her (and before you think it, no I don’t have Munchausen by proxy).  So, today I have bathed her in a nice warm jacuzzi to warm her hands and get her circulation going; I’ve massaged her chunky legs (makes her chuckle) I’ve moisturised her dry skin and I’ve tried to brighten those sad eyes by singing her favourite tunes (badly) whilst conditioning her beautiful Rapunzel hair.  I’ve administered her anti-epilepsy medication, I’ve sat on her to give her some Ibuprofen for suspected period pain (don’t get me started on periods) and I’ve drugged her so that she can fall asleep (don’t worry, it’s legal).

I’m sitting watching her monitor now and she looks so peaceful, she’s kicked the duvet off and is hopefully having happy dreams, I’d love to know what those dreams would be, she deserves the best ones, not dragons and monsters but dreams of buying beautiful clothes, beautiful bags, diamonds and dating Jamie Dornan………..just like my dreams!

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