Episode 11: Fiona and Heather – living with Wolf Hirschhorn Syndrome

Episode 11 Transcript

I have been reading my next guest’s blog Star in her Eye for so long now, I don’t know when I started. Heather Kirn Lanier’s writing about her journey with her daughter Fiona has been a constant, a source of comfort, beauty and grace throughout my whole journey with Eva. Heather is one of those writers who puts things in such a way that it is both poetry and the most sensible thing you have ever read. I am almost always nodding my head in agreement with what she writes, but also blown away by her insight and ability to see through the fog to the issue at the core of an emotion.

Heather carries Fiona on her back in a carrier. They are both smiling.

When I started this podcasting project, back when it was going to be a book of essays, I tentatively approached Heather, sure that she would have better things to do than contribute, but she said yes. We missed meeting each other when I was in Boston over Christmas, but with this episode we finally got to talk.

Fiona sits on the bottom step of a set of outdoor stairs with a warm coat on. Brown leaves are around her feet.

In this episode, Heather talks through her daughter Fiona’s diagnosis of Wolf Hirschhorn Syndrome; how she and her husband came to reimagine the way the word problem was used around Fiona; and how an AAC or a Augmentative and Alternative Communication device helped Fiona to communicate with the world. (For anyone interested, the app Fiona uses is called Speak for Yourself.)

Fiona with one of her crazy hats, sits close to her younger sister Petra at a table.

Fiona and her younger sister, Petra.

For the first time, we also have the voice of one of our kids in the episode too, listen right to the end to hear every bit of Fiona that you can. It’s worth it.

A hand reaches out to choose a word on an AAC talker.

Fiona withe her talker.

To read more about Fiona and Heather, visit Star in her Eye.

You can subscribe to the podcast in itunes and Stitcher radio.

2 thoughts on “Episode 11: Fiona and Heather – living with Wolf Hirschhorn Syndrome

  1. Ellen

    Favorite one so far! Probably biased as a fellow survivor of “the Ohio method” of service delivery, and long-time reader of Heather’s. (Happily in another state now, with a kid meeting milestones at his own, happy happy pace.) <3 Thank you, Tessa!

    1. Tessa Prebble Post author

      I’m glad you like it! I so enjoyed talking to Heather. The Ohio method just sounds so stressful. There’s already so much stress on special needs parents without thinking it’s all on you, all the time. Thanks for listening and commenting!

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