WINTER 2021: THE UPDATE
Inara has had a setback early this year – a hospitalization after nearly dying – but now she is thriving again. And – best news – we have a definitive diagnosis at last: an error in gene RHOBTB2, a diagnosis she shares currently with just nine other children in the U.S. But now that we know to test for it, many more mystery children like Inara will be able to get diagnoses – and more targeted care. Other parents of children like Inara won’t be wondering in the dark with no idea what’s ahead for their child or why their child has suffered. I wrote about this in the expanded second edition to Lives of Unstoppable Hope, after what has been a long winter. Long may our dragon daughter soar! (And roar.)
SPRING 2018: THE UPDATE
We are climbing now, too. Behold the triumph of Inara, who was called “the girl who will never walk” but who decided to be a fierce and all-devouring dragon instead of that.
FALL 2016: THE BIG UPDATE!
Guess who’s walking!
That’s right. We were once told that Inara wouldn’t survive her first year. We were once told she would never stand. We were told she would never walk. She is now taking tentative unassisted steps and lots of assisted steps. Over a year seizure-free and ready to take on the world.
Here she is standing:
And, with a little help from her wheelchair, exploring the world. Girls in wheelchairs explore the world, too. Especially this one!
My Daughter, the Fierce-Hearted
Inara is partially blind, with scarring in her brain and a history of severe seizures. She is also one fierce, dragon-hearted little girl. She is named for a character from Firefly who approached all things in life with both grace and intensity; nothing keeps Inara down, and in our home, she is triumphant.
Readers who are new to my work have asked me lately about Inara, and I thought I would collect the pieces of her story here.
Woven into her story is the story of my books and how I came to bring them to you; the story of my wife and our love for each other and for our children; and even the quiet patience and exuberant big-sisterness and caring of River, my oldest daughter. You can read about Inara and her family in the book Lives of Unstoppable Hope and in these old blog posts, too:
“Update on Inara’s Story; Also, Why Late at Night When Everyone is Asleep I Write So Fiercely and Fast”
“Dragon at the Hospital: Day One”
“Big Update About Inara!”
Inara and the Giraffe Club
How the Kindle and KDP Helped Save My Little Girl
Inara and I cope with the more difficult moments by sharing stories:
December 29, 2015 update:
Today, as I update this blog — today is December 29, 2015 — Inara is growing more able by the week. She has been seizure-free for some time; we hope to keep her so, though we know each month is a new creation. Yet we are so inspired by her. Though she isn’t speaking yet, she has developed a deep vocabulary of nonverbal communication — both gestures and sounds — and she can communicate her needs and feelings. She is artistic, painting with her hands and feet. She is standing (at one time we were told she would never stand) and taking a few assisted steps; we are confident that sometime in 2016, she will be able to do at least some walking. She has more fine motor and problem solving skills now. She is tempestuous, capable of fierce tantrums and fits of uncontrollable giggles. And she is smart. Dear readers, she is so smart. I am so proud of her.
As they say on Firefly: Inara has done the impossible, and that makes her mighty.
I am so proud of her and her sister. And also so grateful for all those — readers, friends, doctors, nurses, specialists, church members, fans and Patreon members — who gathered around us when things were touch-and-go. You all made an enormous difference.
Lives of Unstoppable Hope
I wrote down a lot of what I felt as a father during the dark season. In 2015, I released that memoir as Lives of Unstoppable Hope. I’ve been told that the book is inspiring; a pastor in Oklahoma ordered copies for his entire church. Though the framework for the book is a study of the Beatitudes in ancient Greek as a way to explore “hope,” I’ve been told by a diversity of readers — religious and atheist alike — that the book was inspiring and moving.
Lives of Unstoppable Hope is the story behind all the stories I have written.
If you would like to check it out, here it is:
Stant Litore and family