ONCE UPON A GENE - Episode 106 - Rare Book Club with Co-Host Patti Hall - Featuring Heather Lanier and Her Book, Raising a Rare Girl
Fellow rare moms, Patti Hall and Heather Lanier have shared their journeys in their memoirs. Patti is the author of Loving Large, a story about her experience raising her son who was diagnosed with a rare disease called acromegaly, also known as gigantism. Heather is the author of Raising a Rare Girl, about her daughter who has Wolf-Hirschhorn syndrome.
EPISODE HIGHLIGHTS
What is the synopsis of the book, Raising a Rare Girl?
I start the book talking about a phenomenon called super baby, which is a pressure in pregnancy culture to make a superbaby— a totally healthy prenatal environment encouraged by medicine and the culture at large. Fiona was born full term, but really small at 4 lbs.10oz and no one initially knew why. Three months later it was discovered that Fiona had an ultra-rare syndrome known as Wolf-Hirschhorn. I talk in the book about how I processed the diagnosis and what it meant to have a child with questionable development, how to advocate for Fiona and how to help her carve her way into the world.
How did you arrive at beautiful acceptance?
When someone would say something or make me feel like Fiona was broken, I looked to her and I saw that she was the most miraculous being in my life. Despite the noise around her, I knew Fiona was amazing. I returned to what I knew to be true of her and allowed her to be the light she is.
Did you receive responses from anyone outside of the rare community who read your book?
I get notes and emails from parents who thank me because they're early in their diagnosis journey and it serves as a roadmap. I appreciate the reviews from readers who are outside the world of parenting a disabled kid, like a teacher who said she thought she was open to her students, but realized she had a lot of work to do.
Did you have a moment when you realized the experts were asking you for advice?
I write about a time when Fiona had a fever and I thought we may need to see an immunologist. I'm waiting for the doctor, who was a very good doctor, to make the same conclusion. He turned to medical literature, struggling to spell Wolf-Hirschhorn, looking for anything about the immune system as it relates to the malformation. I knew kids with the syndrome often needed immune support and that was the moment when he started to trust me more.
RESOURCES AND LINKS MENTIONED
Episode 033 - Loving Large: A Mother's Rare Disease Memoir
Loving Large: A Mother's Rare Disease Memoir
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