Hayley Goleniowska, founder of Downssideup tells how a loving note from one sister to another sowed the seed of a book about hope, love, facts, family and inclusion.
Nearly eight years ago, I sat alone at my desk on a cold December evening. Flames danced in the fireplace as my heart felt heavy with uncertainty, shock, fear and worry.
As I typed the words ‘Down’s syndrome’ into my computer, I hoped to find a way of explaining to the two-year-old who was sleeping upstairs, why her new baby sister was not yet able to come home from hospital. I needed a way to make her understand why Mummy and Daddy were so worried. I needed a vehicle to start a discussion about why we are all different and how we all need extra support sometimes.
And, deep down, I too was looking for something positive and visual that would reassure me, would show me how our family life might shape up in the unknown years that lay ahead of us.
Outdated, depressing images jumped off my screen, but I shut them out and gravitated towards the most positive looking books I could find. I ordered them all. Some were outdated or contained incorrect information, and none seemed to contain the facts, written in plain English for children, with colourful photos. And oh, it was the photos I wanted to gaze at for hours, for they portrayed truly what was possible for our youngest daughter, with support.
As the years passed and our family found its way on a new path, the thought of that book we had searched for stuck in my head. I wasn’t sure how to approach creating it and I had absolutely no experience of publishing, so the seed of an idea was left to gently germinate.
A loving note
When my eldest daughter Mia was around six or seven years old, she was a very prolific note-writer. She would leave drawings and notes for us all around the house. One day I found a beautiful note for Natty, saying just how precious she was to Mia, and how her life wouldn’t be the same without her in it. It brought a lump to my throat and was a lightbulb moment for me. I realised here was the basis for the book. Mia’s words would form it’s core.
It took around two more years to complete the work. I asked Mia questions and her answers covered descriptions of Down’s syndrome, support services, heart surgery and even the annoying things all siblings do. We then chose family photos to accompany the words.
But what now? We almost had a book, I ran it through a Photobox website and it came back looking very sweet. Very plain and small but it was the first time I saw that we might actually have created what so many others might find useful. I sent digital copies to the main UK charities, asking for their advice and thoughts. They all loved it and agreed to be listed in the back cover.
I approached a couple of publishers, but our little book was too niche.I looked at printing on demand options, where one book is printed each time a customer buys it. That seemed like the way forward. Now we just had to get the document in the right format.
A friend and former colleague, Sarah, offered to help. The weeks passed and I thought we were close to our goal. I felt the nerves rise at the thought of sending such a personal work into the big wide world. One evening she arrived at my house with some large card tucked under her arm. It was the proof of the book, and what I saw brought me to tears.
My friend Sarah had taken Mia’s book and painstakingly added in not only our photos but Mia’s drawings and beautiful designs too. The whole book looked nothing like the pale little initial idea I had had printed. It was a work of art, a book that children and babies of all ages were going to adore looking at, along with their parents too.
Of course now the thing was too elaborate to fit a Print on Demand standard template. And to print such a colourful book on demand would hike the price per unit to well over £10, nearer £12 and I was adamant that it should be as affordable as possible to all families. £5.99 was a limit I wasn’t willing to go above.
There was only one thing for it. We were going to have to bite the bullet and self publish! A local printer was found, ISBN numbers and copy write purchased and we were off. It all took around a year to do, but finally, in May this year, around 1,200 books arrived at our home. We were to ship them from our front room each time someone ordered one via Amazon.
We were astonished at the response, humbled. The feedback from parents and charities has been incredible. The books have been shipped to all corners of the globe and are now available from Waterstones online as well as Sainsbury’s in Cornwall.
Mia has been featured on TV and radio and in magazines and journals across the UK, and I Love You Natty: A Sibling’s Introduction to Down’s Syndrome is adored by children, teachers, parents, lecturers and medical professionals everywhere. It’s a book of hope, love, facts, family and inclusion.
We have covered our initial costs and have been able to donate over 100 copies and we are now saving up for a second print run. It’s been hard work, but worth the risk, sweat and tears. And I hope we have created something that will make a real difference. Thank you all for advising on, supporting, buying, reviewing and recommending I Love You Natty.