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 in my chest. My son, my precious, brave boy, was facing Opsoclonus Myoclonus Syndrome. Suddenly, it felt like the world was holding its breath. When…
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 my son, H. He devoted his life to researching OMS and founded the National Pediatric Myoclonus Center, where he developed what is now referred to…
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 aren’t polished updates or carefully worded reflections. These were typed in hospital rooms, from car seats, late at night, or early in the morning. Usually…
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 pace picks up, and the attendings, not the interns, start circling. My mama gut was screaming. My outer shell, however, was still trying to convince…
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 the night. By then, the shaking had not stopped. They admitted us briefly but said no MRI could be done until morning. They ran bloodwork…
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 had just turned three, and life felt beautifully ordinary summer evenings at the ballfield, laughter echoing through the house, and a rhythm that felt familiar….
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 flipped upside down when our youngest son was diagnosed with Opsoclonus Myoclonus Syndrome (OMS), a rare and often misunderstood neurological disorder. It’s a journey that…
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 advice, medical advice, crisis care, or a substitute for professional support. I thought today was fitting for this Scripture. Today is my son’s 11th birthday…
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 months, I have learned a lot from our experience with hospital visits and treatments. I understand the heart behind many common statements made by hospital…