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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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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The Lord Will Fight for You
A note from Brandi:This reflection is shared for encouragement, education, and personal reflection. It discusses faith, parenting, medical hardship, and trusting God in hard battles. It is not therapy, clinical…
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Psychogenic Itching
A note from Brandi: This post is shared for education and personal reflection. It discusses psychogenic itching, stress, anxiety, mental health, physical symptoms, and possible mind-body connections. It is not…
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Let’s Talk Hair Loss in Women
Hair loss in women can be devastating. Let me rephrase that. Hair loss in women can feel devastating. No matter who you are or how confident you are in your…
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My Story of Psoriasis and Psoriatic Arthritis
Medical Information Note:This post is a personal reflection and is shared for encouragement and awareness only. It is not medical advice, diagnosis, treatment guidance, or medication advice. Please talk with…
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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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Moebius 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 Moebius Syndrome, rare disease awareness, medical parenting,…
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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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When Medical “Little Lies” Create Fear in Children
I have deep respect for nurses, nurse’s aides, child life specialists, and all the other “worker bees” in the hospital. They are fantastic and often under-appreciated. Over the past several…