“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: special needs parenting
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
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
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
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)
Making Your Marriage a Priority
Making Your Marriage a Priority Making Your Marriage a Priority Marriage isn’t always a fairy tale. In fact, I remember in our early years, a friend told me that one day, I would write a book. When I asked what I’d write about, she said: “How to hate your husband but stay married.” Ouch. That… Continue reading Making Your Marriage a Priority
Resources for Special Needs Kids
Resources for Special Needs Kids Free Items for Children with Special Needs Here are some Resources for Special Needs Kids. There are many more listed on Meriah Nichols Website. If you have participated or know of any other resources, please drop me a comment below so I can add it! Ones We Have Participated… Continue reading Resources for Special Needs Kids
Welcome to Holland
Welcome to Holland is a poem that I have always loved. It is a different way to look at things when life does not go as planned. We have dealt with Dyslexia, learning disabilities, Fetal Alcohol Syndrome, Reactive Attachment Disorder, Sensorineural Hearing Loss, Generalized Epilepsy, Functional Neurological Disorder, and Opsoclonus Myoclonus Syndrome. WELCOME TO HOLLAND… Continue reading Welcome to Holland