Three years ago today he had a seizure. It was, as they say, a doozy. We held our breath, watched his very small body betray him for how many times I cannot and am not inclined to count, and held him tight as he endured the aftermath.
We didn’t know then it was going to be the last—at least for the next three years—that that seizure would mark the beginning of a hiatus that would give our son the opportunity to make up for the proverbial lost time, would allow him to make the strides that had necessarily eluded him while epilepsy exerted its control over every facet of his being.
Three years later our son’s face no longer bears the evidence of his trials. To meet him today you would never know that while other Kindergarteners and first-graders spent their afternoons happily playing, he was sound asleep in his school clothes, the soporific effects of medication more than his small body could bear. You would never know of the afternoons he was simply too weak to walk home from the playground or through the aquarium and had to ride in his toddler brother’s stroller. You would never know how his hair fell out or how sunken and sad his eyes once were.
He is a marvel to me—in many more ways than I can ever articulate—but more than that he is a reminder that we can never presume to know anything about anyone based on the smiles they wear, the energy they exude. What is behind those smiles and under that energy is where the stories live.
Our son’s is a tale of resilience, yes. But it is also a tale of the danger of judging or assessing others based solely on appearances. There is more to him than anyone who doesn’t know him could ever know. There is more to all of us than anyone who doesn’t know us could ever know. Our son is not simply a silly nine-year-old boy who laughs too loudly at equally silly jokes, who makes messes sometimes faster than he (or we) can clean them, or knows just the right way to get under his brothers’ skin.
He is also not simply the avid reader, the eager learner, the boy with the heart of gold.
He is a child who already knows pain, who remembers what epilepsy was and is. He understands not being able to count on his body, and he understands fear.
He is simultaneously similar to and completely different from everyone else.
Just like everyone else.