My daughter Daisy was born with a rare, life-limiting genetic disease. She had lots of things going on medically but in-between hospital stays Daisy loved nothing more than going to school and spending time with her friends. Daisy had a learning disability, she used makaton, a form of sign language, to help her communicate. Despite her minimal verbal skills however Daisy understood everything, she knew exactly what was going on!
Sadly when Daisy was only 10 her beloved Daddy died of cancer. Her teachers made a special book for us to read to her, helping Daisy to articulate her feelings about losing her Daddy. At the time I found that there were very few books that I could use which were aimed at helping Daisy communicate her feelings around her grief and loss.
A year later Daisy succumbed to sepsis and she joined her Daddy in the stars. Daisy had been the life and soul of her school and the staff and children were devastated. I remember visiting my friend whose daughter attended the school. I was really aware when I entered their home that the little girl was trying to make sense of it all - I was in the house, but where was Daisy? She, like Daisy, understood a lot of what was happening but she did not have the words to talk about how she felt.
As I spoke to the teachers and therapists who had worked with Daisy and her friends at school several things struck me; statistically children in special schools are more likely to lose a classmate than a child in a mainstream school, death and grief are not curriculum subjects, very few resources exist to help children, especially non-verbal or learning-disabled children understand and communicate their feelings around death and dying.
I decided to write my children's book, Goodbye Daisy, because I am passionate about breaking down the taboos about talking about death and dying. Just because children have a learning disability doesn't mean they are not grieving for their friends. I saw that so clearly when Daisy's daddy died and later when Daisy herself died. And with the chances of these children experiencing the death of a schoolfriend statistically higher than a non-disabled child then it's even more important to ensure that they receive the support they need.
Goodbye Daisy is told from the point of view of her schoolfriend Evie as she hears the news that she will not see Daisy again and this time Daisy will not come back to school from hospital. Evie is cross and confused as she has lots of questions she still needs to ask. Daisy's mummy brings Evie a special gift, the night light that Daisy used to have in her room. Evie wonders why Daisy didn't take her nightlight with her. When she falls asleep, Daisy comes to her in her dream and tells her that she doesn't need the light any more and she wants her friend to have it so that Evie can remember all the happy times they spent together. The next day in school Evie makes a special glitter star and her teacher hangs it high in a tree in the school garden.
I have commissioned experienced illustrator, Helen Braid, to develop the pictures that go with the story. I worked with Helen on the cover of my book Was this in the plan? and she also developed the visuals for my blog including a picture of Daisy in her wheelchair.
I have written an guide for parents/teachers and carers at the back of the book detailing my own experience in helping Daisy with her grief. Daisy's movement psychotherapist, Ella Beard, who worked with her for many years has also shared her professional advice in the book. Ella has many years of experience of working with non-verbal children and was key in helping the school come together to mourn and talk about Daisy as they grieved for their friend.
Lastly, as many children with learning disabilities relying on makaton to communicate I plan to include a page of relevant signs as a quick reference guide for parents/carers and teachers.
Risks and challenges
This project is clearly very important to me and I have identified an opportunity to produce a book that would really help children who are likely to experience the loss of one of their friends during their school years.
Last year I published a book called Was this in the plan? via a traditional print publisher but for this book I plan to use print on demand as it is more likely that schools, parents and carers will order online when the book is needed. That way there is no risk of it ever being out of stock if a large quantity is needed. In addition it can also be made more readily available overseas.
Anyone who knows me knows how driven and determined I am, despite losing both my daughter and husband in the last 2 years I want to keep moving forward and trying to make a difference, especially to the lives of children with learning disabilities.
I am a highly experienced marketing professional with a bulging contacts book and am confident that I can promote the book so that sales exceed expectations. In addition as a professional writer I hope to achieve some good press awareness of the project in order to help drive pledges and funding.
So how will the funds raised be used?
It's really important that we get the right illustrations in this book. Daisy loved books, just like many non-verbal, learning disabled children just because she couldn't read didn't mean she couldn't look at the picture and understand what was happening. I have worked with Helen Braid, the illustrator, for a number of years. She designed the the look and feel of my blog including a picture of Daisy in her wheelchair and when I needed a cover design for my first book Helen was the illustrator I called on to turn my vision into reality. She knows my story and I know she will do a brilliant job in bringing my words to life. In addition to make sure that when a child dies parents/carers and teachers know what resources are available its essential to have great publicity. I can call on my contacts and social media presence but sometimes you just need to spend the money. I want to make sure that if a child has lost a friend they have a book available that can help them make sense of it all. Lastly there are printing and distribution costs, I want this book not just to look wonderful but to feel wonderful in your hands, I don't want to skimp on the quality. It's a story worth telling after all.
If there are any funds left over they will be donated to the two causes so incredibly close to my heart; ShootingStar-Chase Children's Hospice and Together for Short Lives.
A percentage of the sale of each book will also be donated to these charities.
- (60 days)