It’s a hot August Thursday and I’ve taken the day off work for my baby boy’s first birthday. But right now he’s at home and I’m in hospital, where my six-year-old daughter Beatrix is having lengths of plaster woven around her legs.

A couple of weeks earlier, she’d undergone major hip surgery and was now encased in a double cast from waist to shin while her deliberately broken and reset thigh bone healed. Yesterday, the cast developed a crack. Now, four healthcare professionals were holding her by her ankles and mummy-wrapping her to reinforce it while I tried to distract her.

While some parents might have been devastated by this timing, in one way, I was relieved. Bea has a rare genetic condition called Kabuki Syndrome, which means she has both physical and cognitive disabilities, special educational needs (SEN) and is under the care of 10 medical specialists for her various issues. The less work time her medical needs eat into, the better. Even if, as in this case, it means compromises for the rest of the family: Bea’s dad, her four-year-old sister Felicity, and now one-year-old brother Caspar (who, to be fair, didn’t seem to mind that his cake was hastily bought from Lidl en route home, rather than lovingly homemade).

Every working mother understands the conflicting demands of work and parenting. But as a mother of a disabled child, I contend with a largely unseen but additional, equally all-consuming, third element: care.

“Nobody understood my unusual motherhood experience, so I made a podcast about it”