Medical Trauma: When the Place That Saves You Also Scares You
I can still tell you what the monitor sounded like. Anybody who has spent real time in a children’s hospital can. The particular chirp of the pulse ox. That alarm…
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BEFORE THE SHAKING Book 2 in the OMS Series
About the Book Kid was three years old when his legs stopped working. He was three years old when the doctors at the first hospital said it was strep, and…
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Twelve Candles After Silence
Content note: This post includes a personal reflection on medical trauma, a child’s medical crisis, and survival. Not Ready Yet: Twelve Candles After Silence The room was supposed to be…
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Dear Special Needs Mama
Dear Special Needs Mama, I don’t know your name, but I know your heart.When I look at you, I see the bags under your eyes and the fear behind your…
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When the Doctors Told Me There Was No Hope
I will never forget the day a doctor told us, “There’s no hope.” Not in those exact words, maybe but close enough. The weight of it settled like a stone…
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Speaking the Language of Rare – Part 1
In Speaking the Language of Rare – Part 1, when you live with a rare diagnosis, medical terms start to feel like household words. In our world, terms like IVIG,…
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A Father’s Faith
A note from Brandi:This reflection was written by my husband, Bart, as part of our family’s OMS journey. A Father’s Faith: Holding the Fort While My Son Fought to Walk…
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What You Don’t See – Life Today with OMS
These days, life looks different than it did during the thick of H’s treatments. We’re no longer spending weeks on end in the hospital, juggling chemo, IVIG, ACTH, and emergency…
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When the Protocol Doesn’t Work
In the world of Opsoclonus Myoclonus Syndrome (OMS), few names are as respected and recognized as Dr. Michael R. Pranzatelli. His work changed the trajectory of care for children like…
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Hold On to Hope
When my son was diagnosed with Opsoclonus Myoclonus Syndrome (OMS), the world shifted beneath our feet. It was one of those moments that divides life into before and after. Fear…
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The Long Road to a Name
There’s something uniquely painful about being told a hundred different things, only to be left holding nothing solid. H’s journey has been filled with more questions than answers and more…
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Even When There Was No Reason for Hope
There’s something about this verse that stops me in my tracks. Even when there was no reason for hope… Abraham kept hoping. Why? Because God had said. I was told…
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Before the Shaking Began
A Sweet Night at the Ball Field On this day in 2017, Before the Shaking Began, I had been with my Lady, and I knew her family was coming into…
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When Your Child Is a Medical Zebra or an Okapi
As I continue sharing our journey with Opsoclonus Myoclonus Syndrome, I wanted to highlight a resource that may help bring clarity to people who have never heard of this rare…
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Understanding Opsoclonus Myoclonus Syndrome (OMS)
Medical information note:This post is shared for education and awareness only. It is based on our family’s experience and general information about OMS. It is not medical advice, diagnosis, or…
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8 Years Ago: The Beginning of Change
A Journey of Faith, Fear, and Finding God in the Chaos 8 Years Ago Our Lives Changed, our world shifted in a way we never saw coming. Our youngest son…
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Faith Through the Fog: Our Journey with OMS, Eight Years Later
In the month of June, I’m leaning into something I’ve long put off and that is sharing more of our story, the unfiltered version. Eight years ago, our lives were…
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Feeding Tube Awareness Day
A note from Brandi:This guest post is shared with permission and reflects the personal experience and perspective of the writer. It discusses Feeding Tube Awareness Day, NICU life, premature birth,…
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New Video from NORD
New Video from NORD This video from NORD may be helpful for family members, friends, teachers, or anyone trying to understand what OMS can look like. Sometimes a visual explanation…
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Lyme Disease Information- Diagnosis- Healing
A note from Brandi:This post includes personal experiences and information related to Lyme disease, chronic illness, diagnosis, treatment, healing, parenting through medical uncertainty, and faith. It is shared for awareness,…