Duane was born healthy, as far as anyone could tell, but when he was three months old he was attacked by his first grand-mal seizure, with countless more to follow. He was diagnosed with Lennox-Gastaut syndrome, a rare form of epilepsy, and his seizures were so brutal that the doctors didn’t think he’d live out the year. That one year turned into thirty-one and a half.
Often when I tell people about my brother, I see questions in their faces: “Why was he ever born? Why put him through needless suffering? Why dedicate your family’s time and energy to a hopeless case? Why spend all that money?” These questions reflect a worldview so widely accepted today that most people don’t even realize they hold it: that of utilitarianism. Yet its principles are constantly invoked in debates over right or wrong, for instance in regard to abortion or physician-assisted suicide.
Are you ready to be Duane’s student? Your crash course includes pushing his tricycle for hours, massaging his thin legs to relieve muscle cramps, and getting more oatmeal into his mouth than onto his shirt. It also includes finding that nothing you’ve excelled at till now counts for much here. Best tackle on the field? Meaningless. D needs help simply turning over in bed. Straight-A student? Who cares? D never even graduated from kindergarten. You’re sociable, clever? Useless. Conversations are basically a one-way street.
The real kicker is standing by him through a seizure. You can do nothing to stop or ease it. All you can do is keep him clear of hard surfaces and stroke his shaking shoulder. Then he will fall asleep for hours, leaving you with another assignment – the lesson of quiet. Life is not always a party with continuous background noise and witticisms flying. There must also be hours when you weep for lost chances and lost people and lost time. In turn, those hours can give way to a silence in which you begin to hear God’s hope for your life. Duane could take people there.
"My husband is a remarkable caregiver. He knows how to talk to ER doctors and advocate for Ladybug if she has a hospital stay. Yet as I watched them...