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
Tag: childhood illness
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)
Let Us Marinate
Let Us Marinate Let Us Marinate on the picture. Open it up, enlarge it and just look. This canvas is a 16x20, and there is NO room left to put ANY type of bead. Beads of Courage is defined as "Every time a bead is given, courage is honored, suffering is alleviated, resilience is strengthened, and… Continue reading Let Us Marinate