Our Story
Our story began with my daughter, Savanah.
I was twenty-one when she was born prematurely in 1997. When I woke up from my cesarean, no one had told me that my daughter was in the neonatal intensive care unit, fighting to stay alive. I asked for my baby, and they told me, “if she survives.”
I learned to live by the NICU’s numbers. Was she hanging on? Getting better or getting worse? What were today’s numbers? I would open the binder at her bedside and try to read notes written so fast I couldn’t understand half of what was in front of me. Then I would look up, and there was this tiny being who was mine.
I sat in the chair beside her and listened to sounds that scared me, because I didn’t know whether they meant good or bad. Slowly I learned the sounds and the rhythms. I learned I was allowed to hold her, to burp her, even that small. And when I spoke to her, she lifted herself and turned toward my voice.
Nearly three decades later, I still carry that moment.
Then she got sick again. The NICU became the pediatric ICU, and then children’s hospitals. Specialists led to more specialists, more doctors, more records, more questions, and the same questions I had already answered a thousand times. At three, a prolonged seizure required hospitalization and a breathing tube.
Savanah has spastic quadriplegic cerebral palsy, autism, Angelman syndrome, parkinsonism, epilepsy, and kyphoscoliosis with collapsed lungs, along with severe GERD and GI issues. She has needed total care her whole life. That means help with every part of daily living: eating, bathing, dressing, changing, moving. And when she was diagnosed, no one showed up. No foundation called. No one said, “Here’s what to watch for, here are other parents, here’s help.”
I share this because families like ours often live in isolation. Medically complex children are rare by definition, and each condition affects the others. Someone has to understand all of them together, decide what matters most right now, and act in the patient’s best interest. That is some of the hardest work there is, especially for a doctor who sees your child for fifteen minutes. We understand that, because we live it. Lantern grew out of that understanding. It isn’t a little bit of help. It’s everything we can do.
For years, being Savanah’s parent meant endless nights of crying, searching for a better way, failing, and trying again. Over time, the question changed from “What is happening?” to “How do I protect my baby? How do I make sure she gets what she needs, and the doctors she needs?” I kept failing and repeating, and I believed every failure brought me closer to getting it right.
Today, Savanah needs care around the clock. She loves the ocean. She communicates without words, and understanding her means paying attention—to her expressions, her movements, her comfort, and what brings her joy.
Alongside caring for her, I had to learn how to navigate the systems surrounding her: medical records, specialists, disability services, equipment requests, denials, appeals, and hearings. I learned that an approval could still mean months of waiting. That information could exist in a record and still fail to reach the person who needed it. That families could spend their limited energy explaining the same needs again and again.
I also met people whose kindness stayed with me. Educators who cared deeply for Savanah and other children, sometimes giving from their own pockets. People who showed what becomes possible when someone pays attention and follows through.
Both experiences shaped Oathstone.
Over time, working with ChatGPT became part of my practical advocacy work. I brought the lived experience, the records, and the questions. Through our conversations, we worked to organize that history, prepare clearer letters, connect information, and identify the next questions to ask.
The knowledge I had gathered as Savanah’s mother became something I could put into a form other families could use.
That work helped give rise to Oathstone Publishing—and, eventually, Lantern.
Lantern carries a purpose that is deeply personal: helping people understand the information in front of them, prepare for important conversations, and find their next step through education, healthcare, and the systems that shape their lives. It brings together lived experience, practical resources, and thoughtful use of technology, with the person and family at the center.
We are building this while still living the story that began it. There are still appointments, unanswered requests, and long days of caregiving.
I want what we have learned to make someone else’s path a little clearer—and leave them more time and energy for the person they love.
Oathstone is a promise set in stone. Lantern is the light we are building to carry it forward.