Butterflies sleep hanging upside down, attached to the stem of a plant or flower, eyes open in peaceful quiescence. Sleep was something that came naturally to me in London, yet it seemed that I had forgotten how to do it back in Hong Kong. My mind would flutter from one thought to the next in a kind of half-consciousness. I found myself wishing I was a fat little caterpillar with not much else to worry about other than eating and the gentle act of metamorphosis. Not that it was so easy for the caterpillar, I reminded myself. Metamorphosis involved a huge transformation and caterpillars, like all things in the natural world, had to fight for survival.
And as long as Harper wasn’t fit enough to fight, I would do it for her.
When Dad had left the house I went to his study, turned on his computer and began researching cases of adults with Down syndrome who had been denied transplants. The list was long, but one caught my eye: a 1995 report on the case of an American woman, Sandra Jensen. I read quickly:
Born with Down syndrome and a congenital heart disorder, at age 34 Sandra Jensen needed a heart and lung transplant, but was told by medical professionals that heart and lung transplants were not given to adults who had Down syndrome… Jensen fought for her rights, and on 23 January 1996 received her transplants from Stanford University Medical Centre…
I felt a tumble in my ribs. What if? I pictured Harper’s name instead of Jensen’s, imagined a public battle in Hong Kong that led to reformed laws. At the end of it all, Harper was rosy-cheeked and full of energy, having finally received a new, healthy heart. Then I came to my senses. Sandra Jensen had fought for her rights in America, not Hong Kong. Hong Kong had deeply entrenched views about disability; the ‘less-abled’ members of our society were often shamed and families preferred to conceal their ‘imperfect’ members from the world. But how would Hong Kong ever change if no one took a stand?
I closed my eyes. Harper’s face appeared once more as a photograph in the South China Morning Post. The headline trumpeted: A victory for Miss Eve!
As a child I had sworn that I would fight for Harper, and perhaps this was a way to do it. Dad and I agreed on one thing: Harper deserved to have a heart as much as anyone.