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!
Inara triumphant!
THE BACKSTORY
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:
Preparing for the Long Dark of Moria
The Night I Stayed Up All Night with My Daughter
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:
In friendship,
Stant Litore and family
I will certainly pray for her. Tried pre ordering but amazon uk won’t let me at present, will try later.
Hi Stant,
Thank you for sharing this with us, it must be difficult for you and I cannot begin to imagine how you and your wife feel. But I can say that through this blog, and Facebook you give us; your readers a glimpse of who Inara is and who you are as an entire family. I can only be both thankful and honored to be part of a team of warriors such as you, your wife, your daughter River but specially Inara, the girl with an amazonian soul, and the strength of a mighty giant. I will do what it is in me to support your books, your blogs and your page. I believe through the energy of your dear cyber friends we can generate enough good vibes, and good deeds and channel them towards the rebirth of your little warrior’s health, like a phoenix that comes back from ashes.
Our prayers, good thoughts and meditation will be for you and those whom you hold dear to you.
Be blessed
Iris
Iris, thank you.
It means a lot to us — the support, and the encouragement!
Little Inara is indeed a warrior. Her middle name (cahira, Irish for warrior) was well-chosen!
Thank you for your voice of support and strength for my family!
Stant
[…] fiction and of my efforts to keep my family afloat amid a barrage of medical crises (which you can read about here). I am warmed in my heart by the […]
Sweet girl. Thanks for being so generous in sharing Inara and your family with us. Your journey of the heart is evident in every step. Love and hugs to you all. <3
[…] on my writerly stove, and I often have to duck away and leave some simmering while I tend to my daughter Inara’s medical challenges. If you are a fan of my fiction and would like to support my upcoming projects, please consider […]
[…] You can read Inara’s story here. […]
[…] you can afford. Let’s fund more great stories! Let’s keep my daughter happy and well (you can read her story here). Let’s make audacious things happen together! Let’s not stop here — let’s […]
[…] read more of Inara’s story, click here. And to support Inara’s and her father’s journey, visit me on […]
[…] you help me? With more momentum, I could bring out more Ansible Stories, pay off more of baby Inara’s bills, and do more for my readers, too. I am amazed at how far we’ve come. Would like to go […]
[…] can read more of Inara’s story […]
[…] More on the Story of Inara: stantlitore.com/2014/06/02/the-story-of-inara/ […]
[…] You can read the earlier chapters of Inara’s story here, and if you would like to support my fiction and our care for Inara, you can do that […]
[…] you have gathered around my books and around my characters and around my own family as I have told Inara’s story and our journey through the long dark on this blog. There is a roaring fire on the hearth now, and […]
[…] River and my Inara, never forget: You have done the impossible, and that makes you […]
[…] My wife wrote this today. I couldn’t agree more. Inara, for her part, certainly doesn’t need anyone’s “sorry.” She is one feisty daughter of dragons. […]
[…] the young girl doctors predicted would never stand, who is now taking her first wobbly steps. The scarring on the left temporal lobe of her brain cannot suppress the fire of her spirit or the steel in her heart. This photo below is from the same […]
[…] And, like a radio station, I’m pledge-driving. Except I don’t have a small army of volunteers or a call center; there’s just me. And you. And I want to invite you to my community and my tribe, because that community — seeing readers’ hearts moved — is what I publish for and because the financial support the community provides is what makes it possible for me to care for my little Inara, whose story you can read here: http://stantlitore.com/2014/06/02/the-story-of-inara/ […]
[…] Other Personal Reflections: We Are Bright Burning Stars in the Middle of a Vast Dark The Bible: How and Why I Read It The Story of Inara […]
[…] By the way, if you’re one of my newer followers, you can read Inara’s story here:http://stantlitore.com/2014/06/02/the-story-of-inara/ […]
[…] read to her to lull her to sleep. That is what my wife deals with. Yet she is on her feet, managing Inara’s multiple therapies, parenting River, cleaning house, and designing artwork and campaigns around epilepsy awareness or […]
[…] INARA'S STORY […]
My thoughts and prayers go out to you, your family and especially Inara! I know what it’s like overcoming tremendous adversity and it sounds like this little girl has a heart of gold, the strength of a lion and the tenacity of a wolverine.
I broke my back at the age of 22, paralyzed from the waist down, told I would never walk again. Pishaw I said to the doctors. Five years later I rose from my wheelchair, forever to use a cane, but happy for what I had achieved. I’m 59 now with 23 back surgeries to my credit and a full spine plated and screwed together. The most important thing I credit to my recovery is optimism and extroversion. Little Inara has a whole life ahead of her to prove the naysayers wrong. Good luck young lady! You too can win with a strong family, a positive mind and the belief that anything is possible if you believe.
[…] INARA'S STORY […]
[…] INARA'S STORY […]
[…] the triumph of Inara, who was called “the girl who will never walk” but who decided to be a fierce and […]