The smell of our son’s favorite pastries — croissant, brioche, waffles — lingers in the air, as he hums softly and rhythmically, like an engine warming gently in his chest.
My wife and I were filling out the paperwork for our wills when we stopped abruptly. The uncertainty hit us all at once. That’s the impossible equation: We want our son to live a long, full life — longer than ours. We just can’t bear the thought of the world he might outlive us into.
The finality of death is unsettling for any parent, specifically the unknown that follows for their children. What elevates the fear for parents of disabled children is the known. We see how wider society fails our children with us in their corner. The way we’re forced to fight and scrap for every morsel of the overstretched systems we’re expected to rely upon. Most parents may ask, “What will become of my children when I’m gone?” We’re left asking, “How can we fix the system before we’re gone?”
We are constantly thinking about the precise shape of our son’s life, and what it takes to hold it with dignity, while simultaneously grappling with the fear that what we understand about him — deeply, wordlessly — might evaporate in our absence. That no folder, no care plan, no legal structure will preserve the knowledge of how to truly see him.
