Behind the book: "Cotton Candy on the moon"
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The Inspiration
This book was inspired by my sweet Lilah and a moment we shared together many years ago. A moment I will never forget: Lilah had been playing when her gtube was accidentally pulled out. After multiple attempts, I was unable to get the replacement button in. So off to the hospital we went. It was nighttime, so it was pretty dark outside. Being that I was an exhausted single mom, we did not go out much in the evenings. As we were driving to the emergency room, Lilah looked out her window and said, “Mom...... I want to eat cotton candy on the moon.” There was something so powerful about that phrase and the way she said it. Tears streamed down my face as I told her what a great idea that was. The Importance In our community, every moment of everyday is a gift. Much of life is spent in hospitals and medical centers. Life is cut short for so many of our butterfly warriors. This was the thought that came to my mind when she said those words. The tears were those of a joyful sadness. Of finding peace in her someday eating that cotton candy on the moon.... Aside from the deep meaning behind the phrase, my goal when I wrote this book was to provide these kids with something relatable to read with their parents or to themselves. As children, bedtime stories are one of the things we remember most as an adult. My husband and I read 2-3 short books a night to each of our children. (Crazy I know!) It always bothered me that Lilah couldn't relate to much of the content or characters. My goal in writing this book was to change all of that. I wanted these children to have a book they could open to see a character just like themselves. A story filled with imagination and joy. A child in the hospital with bandages that has dreams all the way to the moon. I wanted them to see that anything is possible for them. They deserve that and so much more The Journey What is truly interesting is that this book wasn't written until a few years after that powerful moment. I had typed the phrase into a note I had made on my phone. It was never far from my mind. Something was telling me that I needed to bring it to life. A few years later I said “That's It!” I opened that note and began to write. In less than 10 minutes. It was finished! I knew that what I had done was worth sharing with the community and the entire world. The next day I put out the word in a few facebook groups that I needed an illustrator and publisher. I had incredible people jump in to make it happen within 4 hours of my requests. It was meant to be. The Goal The moment our book was published is one I will NEVER forget. What an accomplishment, not only for myself, but also for EB awareness. It is a pride I had never experienced before and might never again. I wanted, no NEEDED, to get this out there. I wanted every single family dealing with EB to have a copy, FOR FREE. I didn't know how I was going to do it, but I had to make it happen. I have never been more passionate about reaching a goal as I am with this! I want these children everywhere to feel seen, to feel special. I want them to be able to share this book with their families, friends, teachers, and schools. I want them to fall asleep at night thinking of endless possibilities in life. To start a program where these books can be provided to them, free of cost. Since then, I have used all of my royalties and those generously donated by my illustrator to buy my own books to send to families. Many of my family and friends donated enough for me to hand out 150 books to families at an EB centered gathering. I want it to go further. I want it to go international. I want to bring smiles and comfort to as many of these families as I can. This is my life's mission. I was put on this Earth to make a difference, no matter how small. I will bring awareness and help to get us all closer to a cure. The Butterflies On each page of the book, you will find a butterfly placed within it. This butterfly represents the spirits of those who have traded in their butterfly wings for those of an angel. A gentle reminder of the ones who have blazed the trail towards the progress we have and continue to make in the lives of those with EB. These are the ones we have lost along the way. They are always with us, and are never forgotten. After all, I hope they are up there enjoying some cotton candy on the moon. -Kelsey Gill, Author & Mom to Lilah To all EB community members: if you'd like to request a free book to be sent to your home, please click below to email us your mailing address.
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