This post is going to be different.
I am excited. Really genuinely excited. I can feel life buzzing away in me. I can feel Eva’s influence on that excitement and feel her steering me gently into the project which is making me so excited.
I wrote a while ago about the idea of a collection of essays written by myself and other parents of special kids, detailing and defining what our lives are like. I wanted to create a book which documents the struggles and the triumphs. I wanted a piece of work which was honest and unflinching and which allowed new parents to see whatever they were feeling, someone else probably felt that way too.
I got an amazing group of women together who all have different stories to tell about coming to terms with their one in a million babies and learning to love the new normal that is their life.
And then I started thinking… if someone had given me a book after Eva was born, would I have sat down and read it? Did I have the mental stamina to concentrate for hours at a time to digest these stories? No, no I didn’t. In fact, I still don’t.
The other thing people kept suggesting was meeting other parents through Parent 2 Parent. It’s a fantastic organisation that helps pair new parents with other parents with similar challenges as a means of support. But when Eva was born I couldn’t face talking to someone. I was afraid of their judgement. Afraid I would seem small and gutless by comparison. Afraid that by talking to them I would see just how far I was from being the parent I needed to be.
But something I could have done is listen to other people’s stories, without having to interact in person or on the phone, and without having to extend much mental energy reading an article or book. I could have listened to stories of people in my shoes. People who could acknowledge the truth of their feelings and maybe tell me even if I felt that way that it would get better.
I’m a big podcast listener. I have turned to podcasts in some of my darkest moments. They have provided me with company when I felt lonely, entertainment when I was bored; community, when I felt alone; and a voice to soothe me in the early hours of the morning when I can’t sleep.
One of these podcasts, The Longest Shortest Time, made by Hilary Frank, is responsible for connecting me to the amazing facebook group which is where my own Facebook group of friends came from. It was this same facebook group who sprang into action after Eva died and raised money for CHARGE Syndrome and me personally. This one podcast has provided me with an amazing community of women from around the world who I consider to be real friends.
So when I thought about that parent, trying to come to terms with their baby’s diagnosis, spending hours by their child’s bedside, maybe feeding their baby through an NG tube and checking their oxygen saturation levels, I thought: what if they could listen to a podcast about other families like them to keep them company when they feel utterly alone? What if they could tune in and tune out to a show where they didn’t need to be feeling completely focused mentally, but they could still feel like they were connected and a part of something? What if they could hear from other parents who had been where they had been and had come out the other side, but who weren’t afraid to admit the truth about those early days?
And so the book project changed tack. It moved from a written project to a radio based one. I’m excited to say the wheels are turning and I am making process. I have my first interviewee lined up with the wonderful Jen from Jacob’s Fight who will be talking about her son Jacob and his life with Hurler Syndrome. The recording equipment has been purchased and is on its way, now I just need to learn how to use it. The podcast needs a logo, so that’s being worked on too by some generous graphic designers with hearts of gold, and I have music from one of New Zealand’s most talented musicians to start every show.
So the pieces are coming together and I am beyond excited. I can’t wait to talk to all these amazing parents. I can’t wait to learn their stories and to share them with you all, and hopefully with parents all over the world. I can’t wait for The One in a Million Baby to affect other people in the way she affected me. I can’t wait to put my words into action and have Eva move mountains with my help.
If you didn’t think of yourself as a writer and that’s why you didn’t want to be involved in the book, I would love to hear from you. You can register your interest by emailing firstname.lastname@example.org with some info about yourself and your One in a Million Baby.