Where there is hope

What happens when parenthood is dominated by sickness, disability, suffering and grief? An Auckland couple share their experiences in a book. Sophie Bond reports.

It's a rainy day during the school holidays and James and his little sister, Jessica, are at home with mum Joanne.
Jessica is drawing quietly, James is rattling a small toy in his hand, and making happy noises.
James is 17. Other parents of boys his age might be dealing with girlfriends and curfews, but Joanne and Charles Hewlett wonder where their next respite care break will come from.
The West Harbour couple hope the reflections in their book Hurting Hope will help others understand what life is like with a severely disabled child. While it is not an easy read, the Hewletts' honest, finely crafted insights make compelling reading.
Joanne is a teacher, Charles is the principal of Carey Baptist College, and the book is the result of reflections the pair wrote over several years.
The couple's first daughter, Janelle, was born with an aggressive brain tumour and died at 13. James suffers from severe developmental delay. Joanne hopes the book will be a record for Jessica - a tribute to what life has been like for her parents.
"We'd love other families and caregivers and people in the health sector to read it. And family and friends of those with a disabled child, who perhaps want insight into how people are really feeling. Someone may appear to be coping remarkably well but underneath they're not.
"It's important that people see the other side. It is okay to grieve, feel hurt and disappointed, all those sorts of feelings are normal.
"We wanted to be a voice for parents of children with severe disabilities. Not that many people rub shoulders frequently with someone with extreme disabilities. People like James aren't the ones we tend to see on TV."
Joanne says another important focus of the book is the availability of respite care.
[Respite care centres provide state-funded, temporary relief for families. Last year The Aucklander investigated the shortage of facilities: in Auckland only two cater for  people aged over 17,  and both have waiting lists.]
"I can't overstate the importance of respite care. It has been a huge part of us coping but, unfortunately, the support isn't adequate. We've been fortunate to receive a lot, but we pushed for it."
Families are allocated funding for respite care but finding a respite facility is not always easy, Joanne says.
"Our children managed to fit the criteria for Wilson Home [in Takapuna] but now James is 17 he has outgrown it and we've been looking for an alternative for a while now."
The one appropriate facility in West Auckland has a two-year waiting list. "Parents are struggling and need respite that doesn't seem to be there.
"Families don't have the energy to get into the politics of it all, to push government."
And to those wanting to help friends or family in a similar situation, Joanne encourages them to overcome any fear or awkwardness towards people with disabilities. "See the disabled child as a person, not a problem.
"As a parent, I can really relate to someone who gets to know my child and values them."
Hurting Hope by Charles and Janelle Hewlett is available from Manna bookstores or at www.hurtinghope.com