Grace has just gone to bed..... she has spent the evening down stairs with us because we have purchased Harry Potter and the Order of the Phoenix. It actually finished sometime ago, but she decided to tell us that she hates having to do any treatments physio etc, and she hates going into hospital to stop over night, infact she even hates going to clinic - the smell disgusts her and last time we were in she was sick as a result of the reaction to azithro, shortly before she was sick she had eaten a very multicoloured jelly from the hospital restaurant and now she can't get the jelly out of her mind and she just doesn't want to go back.
She has to go back on Thursday to be set up for IV's ahead of her bronchoscopy on 26 November......... what do you say to a 6 year old when they tell you something like that?
About Me
- Gilly
- I am a parent of a child with Cystic Fibrosis. I don't go to work anymore. I was an administrator for many years but now feel I want to spend my time caring for my daughter. I have raised money for the cystic fibrosis trust through lots of channels from baking cakes to running the Hydro Active Challenge, and will continue to raise money and awareness as long as I can.
3 comments:
(((HUGS)))
xxx
hugest of hugs. I know it seems harsh but you tell them they have no choice. If it wasn't CF, I can promise you it would be something like school....I think it's so much harder for parents when it's health related as it actually is horrid instead of childish I think it's horrid.
My parents were always gentle and always tried to make it better, but the bottom line was it's non negotiable and it's no one's fault it's just the way it has to be.
Sending you massive hugs gilly....and gracey too xxxx
Thank you for your hugs and comments. Grace has been set up for IV's yesterday and is a bit sore, but coped so far, not going in for her bronc until next Monday.
Hopefully we can get it behind us quickly and start to think about Lapland.
Thank you again, gilly xx
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