Light in the Darkness

Light in the Darkness

After the debacle on Tuesday, we have been finding the moments of happiness by looking for light in the darkness…the last 24 hours have brought new sedation medications that have given us very occasional glimpses of the G that we know and love, who opens his...
The Price of Being Right

The Price of Being Right

I like being right. A lot.  However, being right sometimes comes with a high price tag, as I found out yesterday. Here’s the scene: In preparation for Giacomo’s surgery, I was told to anticipate a 2-week ICU stay to stabilize his breathing, amongst other...
Hope, Ten Years in the Making

Hope, Ten Years in the Making

Over ten years ago, I first walked into the craniofacial and cleft palate clinic at the Univerisity of Minnesota, with my dear, sweet boy, Giacomo. At that time, I was well-entrenched in his medical mystery journey, still about two years away from a diagnosis of...
Dying Laughing

Dying Laughing

In our household, we have a problem with excessive laughter at the dinner table (hence the “Laugh” sign over the table.) While this might not actually seem like a problem to most, when you have four people with swallowing dysfunction that could lead to aspiration...
You Needed It, Mom

You Needed It, Mom

At our nightly bedtime check-in of the “Best and Worst of the Day,” I was not surprised that a couple of the kids cited the best part of their day as me playing on the Wii. For many years now, some of their greatest joy has been me putting my best effort...