Book celebrates Miriam’s life

4 May 2009
Writer Huberta Hellendoorn’s book celebrating the life of her daughter, Miriam, an artist born with Down syndrome, will be launched in Dunedin on Wednesday 6 May.

Called The Madonna in the Suitcase, the book traces the story of a young married couple arriving in New Zealand from Holland in 1960 and the birth of their first child, Miriam, in 1962.

Miriam's growth as an artist is fostered by her family, teachers and friends. She is depicted as a child, and then a young woman, of courage and determination. She is both loved and loving.

Dunedin writer Paddy Richardson describes The Madonna in the Suitcase as “a story of grace and hope … one that will provide inspiration for any family but particularly for families caring for a child with special needs. Huberta is a talented, published writer. The book is carefully crafted, with attention to detail and language, but written without sentimentality.”

Huberta, who has had several short stories and articles published or broadcast, has written the book as an address or letter to her daughter – a device that invites the reader to step into the lives of the Dunedin family.

An extra chromosome

In the final chapter, Huberta concludes: “When I began your story I didn’t know where the journey would take me. Your life has been my guide and this work has become a love story about you, but it is also a love story for all those people in the world who have been, or will be, given an extra chromosome.”

The story has already been adapted into five episodes and is scheduled for broadcast on Radio New Zealand’s Nine to Noon show in mid 2009. This adapted script was also one of 30 entries to make the long list of the 2008 Six Pack Competition, which was organised by NZ Book Month and attracted 500 entries.

Huberta believes the book has wide appeal. “I also think it will have a wide international readership because of its value to medical and nursing experts, teachers, physiotherapists, speech language therapists, occupational therapists, and other professionals working with people who have a disability.”

In 2001, Miriam became physically disabled after she had a stroke. She now finds it difficult to paint, write and dance – three activities she loved doing before the stroke left her severely paralysed on the right side of her body.

“All her hard-won achievements to communicate and live an independent life were lost when she had the stroke,” Huberta says. “Miriam used to write a lot of letters and they were very funny and clever. Now, she spends a lot of time finding and circling words in the Word Find books I get for her.”

Since the stroke, Miriam has learned to walk for a short distance although it’s hard for her. She attends the Community Learning Centre in York Place, Dunedin,  three days a week, where Huberta says she “well cared for and occupied in a constructive way” by Trudy Scott and her team.

“Miriam is proud when she arrives home with cards, painted flower pots and bags made of old jeans. Each day, she has a structured programme of reading, writing and arithmetic, plus a selection of arts and crafts projects.”