Sallie Eden finds out more about Janet Cotter and her book, “Lives Worth Living”
Even if I had not been aware of it from reading her book, it was only a short time into our interview before it became clear what a marvellous ambassador Janet is for the children and families affected by life limiting conditions.
Formerly Head of Drama at a Comprehensive School, on retirement Janet took a break to go travelling, before taking on a care role at Little Bridge House (the CHSW hospice in North Devon).
She says, “I had always visited Little Bridge House and what I saw there was truly inspiring – it’s colourful, warm and enjoyable and I thought several times that I’d like to work there. So when I saw an ad for a care team worker I thought I’d apply. Although I’m a counsellor, I had no real experience as a carer but I believed I could offer something. In time I was accepted and trained to work on what they call ‘the bank’, working part time on flexible shifts”
As a counsellor, Janet had already run some ‘Remembering days” at the hospice, aimed at helping people move on from their grief. The book was a way of doing more, by helping parents move forward by telling their stories and, in that way, also providing information to health professionals.
“People don’t know how to react to or support families with a disabled child or a child with a life-limiting condition. Sometimes they don’t want to face it. I want people to feel differently about children in wheelchairs. Living with a child who has a life limiting condition means finding joy in unexpected places; and that’s a revelation for some people”
When talking of the book, Janet is keen to stress “this is not MY work – it’s the parents who wrote these stories. Although I was responsible for editing their accounts, producing the versions you see in the book, from exercise books, post it notes, phone conversations and other collections of memories, it was important to retain the voice of the parents.”
The project, which won a Santander Community prize, took about 18 months and was funded through the generosity of people who pledged for rewards via a crowdfunding project, other people gave money as a gift and many donations were anonymous. The original target was £7,500, but the figure reached was £11,000.
Janet explains “the project is actually in two parts – the visible part that is the book and a website for the parents of newly diagnosed children, to provide emotional support and help them handle the shock and all the other emotions that come rushing at them. As one parent said to me, ‘it’s a small club no one wants to join’.”
“The role of Doctors and medical staff is to make people better and that’s what they focus on, but these children won’t get better and what is often needed is not professional medical input or support from Social Services but contact with others who’ve been through something similar. I wanted to open their eyes to what is possible. That was the trigger for the ‘closed’ Facebook account
(www.facebook.com/groups/livesworthlivingcommunity/) set up to allow parents to share views and provide support to each other.”
How did she choose the stories to include in the book? “I closed my eyes and thought of the names of 15 wonderful children with amazing parents, children I’d met and helped to look after. Not all of them said yes straight away, but in the end, although it was difficult, they were all prepared to give it a go.”
Proceeds from the book go to Children’s Hospice South West (CHSW) and to The Jessie May Trust, a Bristol based charity. Jessica May died at home aged 4 1/2 months, surrounded by her family and supported by a team of nurses. Her parents created the Trust to ensure that every child who is not expected to reach adulthood receives nursing care at home. Since 1996 they have been providing care, free of charge, in Bristol, North Somerset and South Gloucestershire. For more details, or to donate, go to http://www.jessiemay.org.uk/.
The website link for the book is www.livesworthlivingbook.co.uk and for more details of the project go to www.facebook.com/livesworthlivingbook
The book is selling well, with orders from as far away as New Zealand and Australia, and although it’s not perhaps a book you’d think of giving as a Christmas gift, you can still give a gift to a family who needs it by donating to one or both of the charities. But the final words go to Janet “it’s about the children having a legacy, to show the resilience of the human spirit. It is possible to move forward after the death of a child. However ill a child is they have gifts to give, even if they can’t move or speak. They give more than most of us can ever know. These children are not a burden; they change lives completely and forever.”