THAT MONDAY IT was hot. Sydney hot. Classic hot. Veering towards 40 degrees even though it was early March and we should have been past all that. She’d been to school on the Friday, after a few up-and-down days. On the Friday: a version of tenpin bowling, with wire ramps and hand-over-hand assistance from the teachers, at her SSP – School for Special Purpose. Lift up a soft pale hand, a hand that couldn’t lift that far by herself, and place it on the ball…and call it success. The exuberance of those teachers and aides (SLOs? I’m losing the acronyms) was really quite something; it wasn’t patronising, although it tended towards the optimistic. (‘Adania enjoyed taking part in the Rugby League special training camp today.’ She did, really? Can only imagine how startled those professional NRL players must’ve been, who turned up cheerfully but were likely entirely confronted by these bodies, these kids, their sweet softness and unlikely sounds. All those wheelchairs. Not a single kid who could run or catch or – especially – tackle. The world had already tackled them, well and truly. Presented with a mini football, which had to be placed in a lap or passed along, with a ribbon and a certificate.) But where was I? Oh yes, tenpin bowling and a school day on the Friday, from pick-up to drop-off.

But by the Sunday – some routine laboured breathing, changes of colour, all the things we had seen so very many times before. Extra time on the BiPAP – the ventilator – during the day, not just at night. This is a wheezing machine that helps you breathe out as well as in: snaps and velcro and masks and clips and little chambers to fill with distilled water every night. A machine that had – with a puff of air, a mechanical gasp – saved her life more times than we could count. Helped her through a seizure, an eye-roll, a rictus turn.