“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 our chiropractor’s office, and it landed in my ears like a divine interruption. Amid my self-imposed chaos, his words cut straight to my heart. I… Continue reading Did You Even Know You Were Looking at a Miracle?
Tag: Opsoclonus Myoclonus Syndrome
Beads of Courage is A Story of Strength and Recognition
Beads of Courage is A Story of Strength and Recognition. For two years, we’ve tried to access the Beads of Courage program. It is a powerful way to honor children facing life-altering health conditions. I first discovered this initiative through a fellow blogger whose child received these meaningful beads. The concept stayed with me. At… Continue reading Beads of Courage is A Story of Strength and Recognition
When the Doctor’s 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, maybebut 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 the… Continue reading When the Doctor’s Told Me There Was No Hope
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 2, I want to continue unpacking those big words, especially the ones that pop up often in rare disease circles and our story. Acute Cerebellitis… Continue reading Speaking the Language of Rare – Part 2
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, ACTH, and Plasmapheresis are as common as “shower” or “cheese” or “cat.” Even the littlest kids around here know what they mean. But I still… Continue reading Speaking the Language of Rare – Part 1
A Father’s Faith
A Father’s Faith: Holding the Fort While My Son Fought to Walk Again In A Father’s Faith, this is something my husband has written documenting those early days of H's illness. We struggled for many weeks after H got sick. Between hospital stays, doctor visits, and treatments, we didn’t know if we were coming or… Continue reading A Father’s Faith
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 the Protocol Doesn’t Work
When the Protocol Doesn’t Work – Living Outside the Lines in the OMS World. 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… Continue reading When the Protocol Doesn’t Work
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 came crashing in, and the questions outnumbered the answers. The only phrase that permeated through my life was "Hold On to Hope." In the middle… Continue reading Hold On to Hope
Trudging Through the Muck of Life
Let's be real...parenting is hard. Here I am, Trudging Through the Muck of Life. 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 to a type of childhood cancer called neuroblastoma. Others, like ours, are idiopathic—which is a fancy… Continue reading Trudging Through the Muck of Life
Praising God in the Cold and the Storm
There’s this image I used to carry—me, my family, sitting around a cozy campfire, singing Kumbaya. Everything is warm, glowing, peaceful. That’s how life feels when everything’s running smoothly. When you’ve got that rhythm. That flow. Here I am, Praising God in the Cold and the Storm. But what happens when the fire starts to… Continue reading Praising God in the Cold and the Storm
Scrolling Through the Storm
Scrolling Through the Storm – Facebook Memories from the Fight 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… Continue reading Scrolling Through the Storm
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 misdiagnoses than I care to count. This is a small snippet of what it took to finally land on something we could name. But even more… Continue reading The Long Road to a Name
When the Calm Breaks
We got to the Children’s Hospital ER, and I remember it clearly: that moment when the calm I’d carried suddenly started to fray. This is When the Calm Breaks. 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,… Continue reading When the Calm Breaks
“Being Brave” — H’s Story in His Own Words
Some stories are best told in the words of the one who lived them. Here is “Being Brave” — H’s Story in His Own Words. It’s been almost eight years since the day H’s world changed—and ours along with it. So much of that journey has been shared through my perspective as his mom, advocate,… Continue reading “Being Brave” — H’s Story in His Own Words
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 there was no hope in my son living, however, Even When There Was No Reason for Hope. This isn’t blind optimism. This isn’t wishful thinking.… Continue reading Even When There Was No Reason for Hope
The Shaking Doesn’t Stop
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 the night. In the end, The Shaking Doesn’t Stop. They admitted us briefly but said no MRI could be done until… Continue reading The Shaking Doesn’t Stop
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 town. I wanted to give them time together, so I took all my kids to one of my son’s baseball games. It was a warm… Continue reading Before the Shaking Began
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)