Not Ready Yet: Twelve Candles After Silence The room was supposed to be a doorway home. Quiet, not heavy. Not sad. Just full of the relief that comes when five long days are finally over. Bags packed. Shoes by the door. Hope sitting quietly on the edge of the bed waiting to go home. He… Continue reading Twelve Candles After Silence
Tag: OMS awareness
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. This is the final post I will write about our journey with Opsoclonus Myoclonus Syndrome (OMS). It’s not the end of the story, but it… Continue reading New Beginnings are the End of One Chapter and the Start of Another
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, and we were finally on a family vacation, sort of, after what felt like a lifetime in hospitals. H sat on a blanket, watching the… Continue reading The Day He Ran was Our Beach Miracle
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 room visits. But just because we’re out of that season doesn’t mean the journey is over. Life today is still challenging.It’s just a different kind… Continue reading What You Don’t See – Life Today with OMS
When Your Child Is a Medical Zebra… or an Okapi
When Your Child Is a Medical Zebra… or an Okapi As I continue sharing our journey with Opsoclonus Myoclonus Syndrome (OMS), I wanted to highlight a valuable resource that may help bring clarity to those who have never heard of this rare condition—or can’t quite grasp how it manifests. Especially When Your Child Is a… Continue reading When Your Child Is a Medical Zebra… or an Okapi
Understanding Opsoclonus Myoclonus Syndrome (OMS)
Understanding Opsoclonus Myoclonus Syndrome (OMS): What It Is and Why It Matters As part of this series on navigating life after a rare diagnosis, I wanted to take time to share more about what Opsoclonus Myoclonus Syndrome (OMS) actually is. It's a disorder many have never heard of, yet for the families affected by it,… Continue reading Understanding Opsoclonus Myoclonus Syndrome (OMS)
Faith Through the Fog: Our Journey with OMS, Eight Years Later
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—sharing more of our story, the unfiltered version. Eight years ago, our lives were flipped upside down when our youngest son was diagnosed with Opsoclonus Myoclonus Syndrome (OMS), a rare and often… Continue reading Faith Through the Fog: Our Journey with OMS, Eight Years Later
New Video from NORD
New Video from NORD Here is a brand New Video from NORD. For those who have no clue what NORD is...it is the National Organization for Rare Disorders. This site does not have run-of-the-mill type of conditions. By "run of the mill," I mean those diagnosed frequently. Awareness This site is all of the hardcore, rare,… Continue reading New Video from NORD