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 [...]

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 [...]

I wrote some time ago about fear, and how as a parent of a medically complex child fear has become a permanent resident in my life. There is another feeling that has been making himself at home – anger. Not that I have been all Zen before Freya - Years ago, an old boss chuckled [...]

After five and half weeks of home time Freya fancied a break and we ended up at St Mary’s paediatric intensive care unit. After four nights we are back at home and overall it was a pretty good little break. A good little break at the PICU? Let me explain. Last Tuesday Freya was just [...]