What I Haven’t Said Out Loud Yet The moment everything shifted. I don’t know if there was one exact moment. Honestly, I wish I could point to a day, a sentence, something clear and defined but it wasn’t like that. It was quieter and subtle at first and easy to dismiss if I wanted to.… Continue reading What I Haven’t Said Out Loud Yet
Tag: faith journey
The Grief That Comes Before the Goodbye
The Grief That Comes Before the Goodbye There is a kind of grief that no one really prepares you for. Learning to hold what hasn’t fully happened because nothing has “officially” been lost. They are still here. You can still see them. Still talk to them. And still sit in the same room. Yet something… Continue reading The Grief That Comes Before the Goodbye
When Your Parent Starts to Need You
When Your Parent Starts to Need You When Your Parent Starts to Need You and the moment roles begin to shift, there is a moment that doesn’t announce itself. There are no warning, no conversation and no clear line in the sand. Just a quiet realization that something has changed. It might be the first… Continue reading When Your Parent Starts to Need You
The Journey Never Ends
The Journey Never Ends Healing isn’t a straight line.Growth isn’t a checklist.And faith? It’s not always neat or tidy. But one thing I’ve come to believe deep in my bones is this:The journey never ends.And that’s okay. You are not behind. Remember, you are not lost. You are not broken beyond repair.Honestly, you are becoming—day… Continue reading The Journey Never Ends
New Beginnings: The End of One Chapter, the Start of Another
New beginnings. They carry a quiet kind of hope—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 is the closing… Continue reading New Beginnings: The End of One Chapter, the Start of Another
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 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?
Beads of Courage – A Story of Strength and Recognition
Beads of Courage – A Story of Strength and Recognition. For two years, we’ve tried to access the Beads of Courage program—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 one point during… Continue reading Beads of Courage – A Story of Strength and Recognition
Dear Special Needs Mama
Dear Special Needs Mama – A Letter from the Fire 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 smile.I hear the weight in your silence when someone asks, “How are you?” I’ve been… Continue reading Dear Special Needs Mama
The Day He Ran –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 –Our Beach Miracle
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 When the Siblings Are Watching – The Ripple Effect of Chronic Illness. In our home, the impact of Opsoclonus Myoclonus Syndrome didn’t stop with one… Continue reading When the Siblings Are Watching
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, 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, and suddenly, it felt like the world was holding its breath. When the Doctor's Told… 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
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