The next step – The One in a Million baby as a podcast

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 theoneinamillionbaby@gmail.comΒ with some info about yourself and your One in a Million Baby.

Stay tuned!

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16 thoughts on “The next step – The One in a Million baby as a podcast

  1. Maggie

    Love this, Tessa! What a great idea. I would think that it would be very comforting to hear the voices of those who are right there in the trenches with you. Can’t wait to watch this develop. πŸ™‚

  2. Lindsay

    This is very exciting! I love listening to Podcasts – I always learn so much. The Longest Shortest Time is one of my favourites! I can’t wait to subscribe to yours when the time comes.

  3. Courtney

    I think this is an amazing idea and that it will help so many people through those dark first days. It’s so unfortunate that when a child is born who is not “typical” the first thing you are told is how your life is going to change in such a negative way. And it does change, but as hard as our first months were, we have a new perspective on life, our oldest is far more empathetic than most 4 year olds and we are genuinely happy. Great idea!

    1. Jodie

      I agree with you Courtney. No matter how level-headed you are normally, those first few days/weeks are dark and the future lies ahead dark and uncertain as you try to figure out how your lives are going to change. Aside from the perceived negatives we were made aware of, I was also counselled by an over-enthusiastic Down Syndrome advocate (bless her, she was lovely but I wasn’t interested in what she had to say so soon). She told me that Down Syndrome children were such a delight and we were lucky to have such a child. I already knew I was lucky to have delivered our son safely and, since our other children are delights too (most of the time!), couldn’t we just have the delight without the extra chromosome? In the end, for me, it was about acceptance. That just took time, getting to know our wee boy once he got out of Special Care and blending him into our family as we had done with all of our other children. We have grown as a family in our perception of people and their differences – I can see that – but one year on, I still see us as an ordinary family getting on with life. My wee “delight” still poops in a horribly smelly way and keeps me up at night – no dark drama, no rainbows and unicorns either – just life as it unfolds.
      A podcast of different experiences is cool because those going through the early days will hear of life settling down after the drama and may find strength and confidence in the way others have worked through the uncertain time. It is so easy to feel alone, despite the official support system, when your baby is born different from others. Good on you Tessa for a fine idea and the impetus to get it done.

      1. Oneinamillion Post author

        Yes you’re absolutely right. You can’t rush that introduction to how good your life will still be. You want to feel angry and you’re allowed. You need to be able to grieve the life you wanted for you and your child. And you need to know it’s ok to feel all sorts of things.

  4. Claire

    Brilliant!! Looking forward to hearing these. You are the right person to do this, talented, articulate with such brave, breathtaking honesty, passion and compassion and love in your heart. Go you with Eva spurring you on!!!! X

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