“I don’t know how you do it,” a stranger said to me, as my son, Kannon, rested in an aisle of a grocery store after a seizure. The strangers always have a frantic way of asking to help and most certainly seem relieved when you say, “No thank you, I’ve got it.” I barely remember my time as a new LGS mom. It seems like a lifetime ago but I do remember that overwhelming feeling of going in public, fearful of this very interaction; afraid the stranger would panic and in turn make me panic, afraid the store manager would call 911 and/or make me fill out an incident report. But most of all I was afraid of all the stares. Those stares can make sitting in an aisle with your loved one feel like the loneliest, most vulnerable, place in the whole world.

Years have passed since Kannon was diagnosed with LGS and the question remains, “How do you do it all on your own?” Close, longtime friends spend an afternoon with us and by the end of our time they always ask that same dreaded question. They are exhausted. Exhausted from watching me chase his every move, always from 20 yards behind. Let’s face it, LGS ages us. Often times I find friends and family exhausted by his curiosity, overwhelming amount of energy and even seizure activity.