Months ago, I emailed a group of mothers who I have met through various means, but mostly through the blog. They all have children with extra needs, whether those are medical, educational, physical, or all of the above. I was planning an essay collection and I wanted to know if they would be willing to take part.
The majority were happy to be involved. I started thinking about how it could work and my brain began to hurt. I didn’t want to tell each parent what their focus should be, but it seemed clear the book would need some kind of over arching structure.
I puzzled over it for weeks until one day I realised maybe it wasn’t the project that was the problem, it was the medium. I pictured myself in Eva’s hospital room after she was born. I imagined a well meaning social worker handing me a book of essays. I saw that book being accepted by me and then put aside. I didn’t have the mental capacity to read. To concentrate on words on a page, let alone pages in a book.
I spent hours in that hospital room with Eva. We had naps together, with her lying on my chest. And in those hours, when it was just the two of us, I listened to podcasts. They were company. Voices in my ears when I wanted to block out my own inner voice. They provided me with friends when I couldn’t face seeing anyone in person.
Remembering those moments, I realised I was focused too much on the writing. It’s what I know how to do, so it seemed like the obvious choice. But what if I could translate those same stories into the spoken word and instead of reading a weighty book, the parents I invisioned could listen in the late hours of the night when they were alone and tired and feeling in need of company?
I emailed my group of mothers and floated the idea. I felt flaky and amateur, like I was flitting from one thing to the next. I was nervous that these women, who had already been through a lot, would not have reason to trust me with their stories. I hoped I could inspire confidence, but I was worried my inability to stick with one project for longer than a couple of months would cast doubt into their minds.
To my delight, they were almost all eager to be a part of it. I updated them as I bought gear and did my research. And then all of a sudden it was time to pick our first guest. Jen Carter from Jacob’s Fight put her hand up straight away and I am so grateful for her trust in me.
I have no experience in radio. I am trained as a journalist, and I can write, but radio is a brand new thing for me. So while I knew I would do my best to tell her story well, Jen had very little reassurance that I could even do this thing. She put her trust in me to help her tell her story. She allowed herself to be first before she had heard whether I could even do it.
The jury is still out on whether I can actually do this, but I was humbled and honoured to discuss Jen’s family’s life with her. And I am thrilled to be able to share her story with you now.
Jen is the mother of Jacob, a gorgeous, happy kiddo who just happens to have both an interstitial lunge disease and Hurler Syndrome. This is a rare degenerative metabolic disease that results in early childhood death without invasive medical treatment.
In August 2014 Jacob underwent a bone marrow transplant. This doesn’t cure Hurler Syndrome but it stops the progression of the disease. Jacob will always have learning difficulties and problems with his skeletal structure but the transplant has stopped the neurological decline.
During the episode Jen explains her family’s decision to go with the bone marrow transplant, as well as what her life is like and what it’s like to love a child like Jacob. You’ll also hear the occasional squawk from Milo, Jacob’s little brother, as the episode goes on.
When Jen had Jacob she was quite a bit younger than I was when I had Eva, and in talking to her I was struck by her maturity and grace in such difficult situations. Life doesn’t always give us what we thought it would, but Jen and her husband Matt have become the parents Jacob needs and listening to their story I felt inspired and fairly awestruck.
My podcasting skills aren’t quite there yet. They don’t match the importance of these stories. I’ll get there. There are bumps, clicks and crackles that shouldn’t be there. Sometimes the cutting isn’t perfect and I’m still getting the hang of story telling in this way. But that’s not going to stop me. Hearing these stories is more important than putting out a product that is perfect, and after listening to Jen, I’m even more motivated to ensure other people hear them too.
This is the first guest episode of The One in a Million Baby podcast. Thanks for listening and reading.
Listen right here, or subscribe through iTunes here The One in a Million Baby – Tessa Prebble
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You can follow Jen and Jacob’s journey at Jacob’s Fight – living with Hurler Syndrome.
Thanks again to Grayson Gilmour for his music from his album Infinite Life!
You can buy his album on iTunes and through his website.
And thank you to Enelia from Abacus Finch for the beautiful logo design.