Last couple of months I have written a lot about the struggles we are currently facing getting Freya the services at home we need to keep her alive & well, and have some sort of semblance of a life other than a desperate scramble to manage every day. Since Freya was born I've encountered many [...]
Care packages
24/7
onIf you ask a parent of medically complex child what their life is like they will often tell you it's one step forward and two steps back - though I think it's more like one step forward, twelve back, few side way steps and jump in the air - and this is very much what [...]
Stupid is as stupid does
onUgh. Just ugh. I have numerous times written about the bureaucratic nightmare living with a chronically ill child is and the endless battles we have faced in the last two years to ensure that Freya's needs are properly met, but the events of last couple of months take - like people far politer than me [...]
A mistake… or something else? Feeling queasy about continuing care
onIt's been overall a pretty crappy week. After the little lady's fun-filled birthday celebrations I started feeling a bit funny. First I thought it was directly related to the amount of sparkling wine consumed (child's birthday is as much theirs as it is their mother's) but soon it came clear I had caught some sort [...]
The (inevitable) political one
onElections. Whether you rejoice in the small government approach of the other side of the pond or rejoiced in the victory of the left in France there is a distinct smell of change in the air. Here in the UK parliamentary elections are around the corner. After the emotion provoking brexit referendum last year there are [...]
Of caregiver fatigue
onJanuary always feels like the longest month and this year has been no exception. Freya has been doing well, whizzing around the flat with her little trolley and being full of mischief (she's recently discovered the joys of dropping things in the toilet bowl. Must be a genetically programmed milestone for toddlers, and yet another [...]
