I sat around a meeting with four professionals sitting in a semi-circle around me. "I will not let you fail my daughter."  I repeated "I will NOT let you fail my daughter". And we went around in circles. "We are not asking you anything that is beyond reasonable expectation of parental care". "We will want [...]

If 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 [...]

Ugh. 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 [...]

Elections. 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 [...]

January 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 [...]