a family’s journey of love and loss in Nepal
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  Publisher : Pier 9 / Murdoch, first published in Australia and NZ (May 2007)
                launch in the UK 1st June 2008, Distributed in the UK by Macmillan Distribution Ltd (MDL)


Page count : 432
RRP : £9.99
ISBN : 978-1921259265 and 1921259264



Synopsis

This is the autobiographical story of an English doctor who, a month after the birth of her second child, returns to Nepal. The book describes what drives her to leave – despite the admonitions of doctors and their gloomy prognostications about her son. She doesn’t know what to expect but fears the worst. Leaving Britain means abandoning access to good medical care, but it allows the child to live in dignity and happiness; it allows him to escape from daily blood tests, feeding tubes, hospitals and institutions. He defies the doctors’ predictions and his parents enjoy his short life; they live as a normal family not dominated by hospitals. They also learn from the tolerant accepting attitudes of Nepalis. The mother struggles with guilt, often thinking that she has made the wrong decision, but guilt is mitigated by seeing the joyous carefree child develop.

A group of giggling young Nepali mothers gathered around to see my five-week-old: to compare babies. They took him from me and pressed in to see. ‘How beautiful,’ ‘Such soft white skin,’ ‘These little holes in his ears are a gift from heaven.’ This was the first time strangers had admired my new baby, and at that moment I knew that it had been right to flee England. There he’d been still as a rag doll; he twitched at any noise and vomited after each tube-feed. He was suffering. Panic often showed in his eyes. We didn’t know what to expect of the future. All we knew was that it would be better than submitting to what the Cambridge doctors had planned for our quiet beautiful baby.

We had been living in urban Nepal, but would be moving to remote Rajapur Island in the middle of the largest tributary of the Ganges. We were up-beat about going but Nepalis warned of the heat, bandits and disease in the Plains. On Rajapur though we entered an accepting, straightforward community where David was special – touched by god – not abnormal. Our neighbours saw beyond his handicap. He stopped twitching at the slightest sound and he rallied physically too. Soon there was a sparkle in his eyes and slowly, he started to respond to us, even tease us. We were right to take him away to Nepal. And David’s older brother, Alexander, was spared spending his early years in dank England, hanging about in hospital waiting rooms. We settled into a contented, sleepy life on our island where we lived close to tiger, rhino and wild elephant, and village boys taught Alexander to climb mango trees, make catapults, catch skinks and fly kites.

The one sympathetic hospital doctor in Cambridge had advised us to treat David normally and we took this as a licence to take him on his first trek; at the age of four months, we packed up David’s heart medicines and tubes and headed up over precipitous drops and wobbly rope bridges to explore drippy forests and mediaeval hill-forts. The mountains were spectacular and healing. Strangely David’s heart disease protected him from the affects of high altitude. Our arrival in each mountain village was heralded by choruses of, ‘Children have come!’ We’d be surrounded and David taken from his carrying basket to be handed around for all to cuddle. He glowed in all this attention. He smiled and burbled appreciatively at all his admirers. Nepalis helped us see David’s qualities and talent for laughter.

I took up a little part-time health work, taking David with me to village meetings as part of my credentials for talking with the women. Our Nepali neighbours had their own problems yet they took life as it came and dealt with their hardships cheerily. Their spirituality and fatalism seemed to allow them to snatch some joy out of life too, and they helped us see our situation in proportion and live contentedly with our – at times – uneasy child. We did not dwell on David’s problems but, having absorbed the positive aspects of both cultures, could enjoy his happy personality and increasingly mischievous sense of humour.

This book describes the emotions of facing up to having a special child. It also shows that throughout all this we did not allow David’s problems to swamp us. We could still laugh, be optimistic. The book looks at some difficult issues surrounding disability and the ethics of who should be treated – or not. It contrasts our unhealthy, unhelpful Western views of imperfection and death with a more tolerant, fatalistic view in Nepal. There it was easier to take life day by day.
 
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