Please Help Protect Kentucky Waiver Services
I have never been one to ask people to like, share, call, email, or do anything just because I posted something. That is not really my style. But sometimes staying…
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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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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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The Day He Ran was Our Beach Miracle
I can still feel the sand under my feet and I can still remember The Day He Ran. Our Beach Miracle. The sun was setting, the breeze was just right,…
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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 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 2
Speaking the Language of Rare – Part 2 In Part 1, I walked through some of the most common medical terms we’ve come to know and use daily. In Part…
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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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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…