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
Tag: OMS
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
New Video from NORD
New Video from NORD Here is a brand New Video from NORD. For those who have no clue what NORD is...it is the National Organization for Rare Disorders. This site does not have run-of-the-mill type of conditions. By "run of the mill," I mean those diagnosed frequently. Awareness This site is all of the hardcore, rare,… Continue reading New Video from NORD
Little Lies Along the Way = Fear Amongst Children
Little Lies Along the Way = Fear Amongst Children I have deep respect for nurses, nurse's aides, child life specialists, and all the other "worker bees" in the hospital. They are fantastic and often under-appreciated. Over the past several months, I have learned a lot from our experience with hospital visits and treatments. I understand… Continue reading Little Lies Along the Way = Fear Amongst Children
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