Sharing disability stories lessens grief and helps other parents
Tessa Prebble knows the dark thoughts parents of babies born with disabilities experience, and she knows the grief of losing a child to complications from those disabilities.
Her daughter Eva was born in April 2014 with multiple and complex disabilities, the extent of which hadn’t been picked up in pre-natal scans.
Eva died 10 months later.
‘‘I didn’t cope very well at all and went through all sorts of struggles, including whether I wanted to parent her,’’ says Prebble.
‘‘She ended up spending eight weeks in foster care, with me visiting regularly until I took her back.
‘‘It was a really, really tough time. I never thought about that being my life, and I had really dark ideas about what it meant to be the parent of a child with disabilities. It was all black. And then you double that down with regular pregnancy hormones and first-baby worries.’’
When she did take Eva back, although the baby was blind and deaf, along with having other issues, Prebble and her ‘‘always smiling’’ Eva enjoyed a few precious months together.
By the time Eva died, Prebble had found a strong support network of Facebook groups and was driven to help others. She wanted to use her skills to produce ‘‘warts and all’’ stories where parents share their dark thoughts, but also how they
made it through that complex first year of disability parenting.
‘‘Something that I would say to parents, ‘I know how you feel – but it does get better’. I first had the idea to make a book of essays of parents’ experiences in that first year. I contacted about a dozen I knew and they were keen, but they weren’t writers.
‘‘Then I pictured myself being given a book when Eva was a couple of months old, and I knew there was no way I’d read it. I’m a big podcast listener so I decided to create something that would be a ‘friend in their ear’, and not take a whole lot of mental energy.’’
Putting in some of her own money, and funds raised by one of her Facebook groups, Prebble bought some rudimentary recording equipment and set about teaching herself to podcast. ‘‘I’ve got journalism experience but no radio journalism or podcast experience. Google was my friend as I worked out how to do it the cheapest way.’’
With a dozen or so podcasts completed, and a growing audience, Prebble applied for the AMP Scholarship in 2016.
‘‘I saw it as a chance to upskill myself and to buy better equipment.
‘‘I wanted to be sure I was telling the parents’ stories as well and professionally as possible.’’
With her $10,000 scholarship, Prebble bought better equipment, a replacement computer, a sound baffle for her spare roomcum-recording studio, and sound engineering tuition.
Winning the scholarship also gave her something money can’t buy. ‘‘The scholarship legitimised The One in a Million Baby podcast as a worthwhile product outside of the disability community. It was great encouragement to keep going.’’
To date, she has produced 36 podcasts, including seven that highlight the challenges parents of children with disabilities face accessing education.
While Prebble’s concentrating on her new job as a content creator for Greater Wellington, she’s planning a new series sharing the stories of parents whose children have died from the complications of their disabilities.
‘‘We have lost so many children in the Charge community alone [Eva’s diagnosed condition]. This podcast would be a commemoration of each kid – celebrating them for who they were. So often parents who have lost children want to talk about them but don’t get to. This podcast would give them that opportunity.’’ theoneinamillionbaby.com
Content produced as part of a partnership with AMP Scholarships