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