Let's start with Mighty Joe, the baby I found in a coma at the beginning of Lost and Found: Losing Religion, Finding Grace.
Joe will be 9 years old in May.
Life with Joe is not easy. There is no "off" button. He's perpetually impulsive, impossibly loud, consistently unpredictable, and prone to the regular meltdown. He sits on a ball at the dinner table, smells everything new to him, and packs his blankie in his backpack to school.
If you recall, Joe has six actual holes in his brain, but the two that seem to affect him the most at the moment are the bilateral holes in his frontal lobes. They affect his executive function ability (how the brain organizes all incoming information), seizure activity, and impulsivity. Joe could sit on his hands all day long but those holes in his frontal lobes are going to make those little hands dart out and grab something he shouldn't at any moment. It's hard to be Joe.
But Joe is a marvelous miracle. Someone once told us he isn't, that Biblical miracles aren't that. Whatever. Pick a different word. Joe is a continual tear-inducing wonderment. Will that work? Because Joe has no brain matter in his occipital lobe, and yet he sees. He can't process what he sees at 100%, but he sees. And he rides a bike, jumps off the diving board, and plays baseball on a team for kids like him. He also reads.
His future is punctuated by a giant question mark. He likely won't live independently. He needs us to be his missing executive function. He lately has so many odd questions about God and Jesus and I can't make him understand even the basic gospel, but that's quite alright. God made Joe, God loves Joe, and God will never leave nor forsake Joe.
Joe in the PICU, day 2.
