Down but not out

Our son Sam, who died of leukaemia at 17, had Down Syndrome. Some people might write there that he “suffered” this chromosomal disorder, but that simply wouldn’t be true.

It was a gift to him, as he was a gift to us and so many others he encountered: I have never known such an unadulterated free spirit.

Today is World Down Syndrome Day, an ideal time to remember Sam and the joy he brought, though of course his mum and I do that every day.

Why was Sam so precious? Around Sam, no one had to try hard or seek to impress. He brought out the best in people by allowing them to relax into their better selves. He absolutely accepted them as they were.

Perhaps even more important, he lived entirely in the present moment. After the most important question of the day had been asked at breakfast – “what’s for dinner?” – he spent little time anticipating, a massive boon when the day might involve hospital trips, needles, chemotherapy, lumbar punctures, X-rays, endless waiting. And he never resented the medical staff for their painful but vital invasions. He had several relapses, and lived 15 years after his first diagnosis.

Our family reflected on this trait and vowed to emulate him, which we have not necessarily achieved. Sam exemplified the wisdom of Jesus: “Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

It makes me unutterably sad that people with Down Syndrome are disappearing, at least in the West, lost to early diagnosis and termination as though they were deficient and subhuman. We are all diminished by such a loss.