Trevor's seizures are not noisy or (externally) violent. In fact, aside from the times he might give a little gasp right at the beginning, they are eerily silent. Often, the only sound to be heard is us, murmured attempts comforting him. Or maybe we're trying to comfort ourselves.
Since his seizures have aggressively reemerged, not a Sunday has gone by without their invasion. One day I'll find adequate words to wrap around how wrenching it is to have my voice lifted in worship during a favorite hymn, only to turn around and discover he's silently seizing. Sitting small and alone and seizing in the pew, while the rest of us, on our feet, sing praise. Feeling the squeeze of my heart that, had I not turned around just then, the seizure would have come and gone silent, unnoticed. Wondering how many have. That breaks me in the deep parts of my soul. The poignancy of the unassuming voices continuing in worship around us is not lost on me. To stand there, in the midst of Grace and brokenness tangibly colliding is indescribably moving and painful. As discreetly as possible I watch him until it's over and when it is, I grab his hand. So he knows my heart is with him. That I'm here. Present. These are essential to me. That he doesn't feel alone in this.
And yet, to feel so utterly alone in this.