Daniel is good at not dying

Thu, 30 Mar 2000 17:00:00 +0000

My son, Daniel, is a plump, barrel-chested little guy with many drastic-sounding diagnoses: severe spastic quadriplegia (aka cerebral palsy), developmental delays (mental retardation), cortical visual impairment (blindness). None of them is fatal. But there was a day in spring when, waiting at a stoplight with him strapped into his car seat behind me, I burst into tears, thinking of the cats and chickens that could regulate their body temperature better than he could.

In his early months he'd gotten legendary fevers, off the end of the thermometer, but his normal temperature was low, in the 94-to-95-degree range. At the stoplight I suddenly saw the futility of trying to externally control a delicate biological system that was, let's face it, careening madly off course. I foresaw our inevitable defeat. "He can't last. He can't last," I sobbed to the red light. Daniel was 9 months old.

But he grew, and so did his problems: pneumonia on the Fourth of July, pneumonia at Thanksgiving. A surgery near Valentine's Day was supposed to end the pneumonias by tightening the entrance to his stomach, where everyone thought food was leaking into his lungs. It didn't work -- the pneumonias came more frequently. Worse, the geography of his digestive tract was now foreign to him, so that he could no longer manage swallowing, and we were forced to feed him through a tube attached to a porthole into his stomach.

Salon.com > Elizabeth Halling

Daniel is good at not dying