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A boy who came back: the near-death, and changed life, of my son Max

It was, we were told, a case of sudden infant death syndrome interrupted. What followed would transform my understanding of parenting, disability and the breadth of what makes a meaningful life

Ruth’s greatest peacetime virtues map neatly on to the job description for a top-tier parent to a kid with a disability: her fearlessness is now directed at intransigent bureaucrats instead of difficult landlords, her unwavering loyalty now applies to Max as well as her oldest friends, and her boggling adaptability now means that, as well as figuring out life on a new continent, she can sketch out your shared place in a totally different world. Poor old Max: where most parents are cooing at their indolent progeny as they chuck another bowl of mashed banana on the floor, or dumping them on the rug with a pile of bricks and the vague instruction to follow their instinct, we were coaching him through a regime of baby sit-ups and commando rolls that brought to mind swelling trumpets and a young Sylvester Stallone. Kids with cerebral palsy often have a lot of trouble in the midline, the central zone where so many of life’s vital activities take place: to hold a toy proffered beneath his eyes, Max would extend his arms to their widest wingspan, then inch one hand gradually towards the centre, saying OOOH as he went, until you met him with the prize halfway.

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