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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Trudging Through the Muck of Life
Let’s be real…parenting is hard. Parenting a child with a rare disorder like Opsoclonus Myoclonus Syndrome (OMS)? That’s a whole different level of hard. Some cases of OMS are tied…
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Praising God in the Cold and the Storm
There’s this image I used to carry. It is an image of me, my family, sitting around a cozy campfire, singing Kumbaya. Everything is warm, glowing, peaceful. That’s how life…
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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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The Shaking Doesn’t Stop
The Second ER – Misdiagnosis #2 We made arrangements for the kids, packed bags, and headed 2.5 hours to Nashville. We arrived at Vanderbilt Children’s Hospital in the middle of…
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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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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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Forgiving Yourself: A Path to Grace
Forgiving Yourself: A Path to Grace We often talk about the power of forgiveness—how freeing it is to release bitterness toward others. But what happens when the person you need…
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Surviving the Storm: God Is in the Middle of It
Surviving the Storm: Holding On When Life Falls Apart In Surviving the Storm: God Is in the Middle of It, there are seasons when survival feels like the only goal—and…
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5 Unexpected Ways Starting Over Can Make Your Life Better
5 Unexpected Ways Starting Over Can Make Your Life Better Here are 5 Unexpected Ways Starting Over Can Make Your Life Better. After a rough start (and finish) to my day, I…
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Not All Storms Disrupt
Not All Storms Disrupt. Some Clear Your Path Life can often feel like an unpredictable storm. It can feel chaotic, overwhelming, and full of uncertainty. We face challenges, setbacks,…
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Do Not Be Afraid
Do Not Be Afraid Fear has a way of creeping into our hearts, whispering doubts and worries that steal our peace. Life is unpredictable, and the unknown can feel overwhelming….