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
Tag: opscolonus myoclonus syndrome
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
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
“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 Prophecy and The Call
The Prophecy and The Call In December, we found ourselves at church, preparing for worship. After several months of church hunting, we had settled on one that we had initially been hesitant to visit. We knew the pastor and his wife, along with a few families, but we hadn't been attending for long. It felt… Continue reading The Prophecy and The Call
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