I was 24 weeks pregnant, my unborn child on the cusp of viability. I was pushing 40 and I shouldn’t be pushing her out for another 16 weeks. It wasn’t my first pregnancy, but I was yet to hold a living, breathing newborn in my arms.

On Easter morning, I awoke to the crippling spasm of contractions. Five minutes apart. I knew I must contact the labour suite, but I was too petrified to articulate what was happening – it felt like the beginning of the end.

This blog charters the journey of the conundrum that is my darling daughter, Matilda. She is the most joyful child imaginable, but her future is uncertain. She is outwardly the picture of health, but her kidney function is less than 25%. She’s sharp as a dart, but her hearing is distorted due to Auditory Neuropathy Spectrum Disorder. For her, even the clearest speech is like listening to a badly tuned radio. She’s two-and-a-half, but she’s the same size as an average nine-month-old and no doctor is sure why.

Our story starts with us entering a hospital that we were not to leave for over 100 days. Its conclusion is as yet unwritten.