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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New Beginnings are the End of One Chapter and the Start of Another
New beginnings. They carry a quiet kind of hope which is soft, steady, and full of promise. Today is the last day of June, and with it comes a shift….
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With Every Joy and In Every Hope
This journey with OMS has brought me to my knees more times than I can count. It has stretched me, refined me, broken me open and built something stronger in…
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Make A Wish and Give Kids The World
When a child lives through a life-altering medical condition, the whole family learns how heavy ordinary days can feel. Appointments, therapies, fear, exhaustion, and uncertainty can crowd out joy. For…
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Did You Even Know You Were Looking at a Miracle?
“Did you even know that you were looking at a miracle?” That question caught me completely off guard. It came from a gentleman sitting nearby in the waiting room of…
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Beads of Courage is A Story of Strength and Recognition
Beads of Courage graphic representing medical milestones, pediatric bravery, chronic illness, Child Life support, and hope for children with medical challenges. For two years, we’ve tried to access the Beads…
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When the Siblings Are Watching
When your child is sick, your entire family gets pulled into the storm. What some people may forget is that there are other siblings in the home. This is about…
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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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Scrolling Through the Storm
Every now and then, I open up my Facebook memories and come face-to-face with the version of me who was holding it together with prayers, sarcasm, and sheer willpower. These…
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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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When the Calm Breaks
We got to the Children’s Hospital ER, and I remember the moment clearly. The calm I had been carrying started to fray. There’s a shift that happens when the staff’s…
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“Being Brave” H’s Story in His Own Words
A note from Brandi:This post includes H’s words and is shared with his permission as part of our family’s OMS journey. Some stories are best told in the words of…
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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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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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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…