Holding Up the Sky_final EPUB 9.12.25

As I prepared a small tray to carry Ovaltine (Kathryn’s magic potion), I dreamed about my days in Berkeley, stirring my Peet’s coffee till ten, feeling the small warmth of sun coming over the Berkeley hills thawing the morning chill, as I savored the distant eucalyptus aroma, and gazed at the Chronicle with the deep satisfaction of knowing that nothing of great journalistic value would escape me. The tone of those California mornings was set by the pleasant prospect of noodling a consultant report or dictating into a tape recorder by the local pool till it was time to trade lap pool for carpool, or to take over with the kids after nap time.

Kathryn’s tray also held her morning medicines. She was then beginning to take Depakote, prescribed after her seizure the previous fall. At the time, Depakote was a new drug that didn’t have the downsides of phenobarb but did have its own dangerous side effects on the liver, especially for infants and toddlers. There we were, in the dark again, struggling to weigh the costs and benefits of a medication without complete information. Physicians will tell you that seizures do not have long-term effects. But watching your young child go through the shaking, the eyes rolled up, the unconscious thrashing, will make you want to reach for any palliative. We saw Depakote as a short- to medium-term therapy, even though we were still uncertain as to how to think about the seizures themselves.

Depakote came in a capsule. We had learned long ago the futility of getting a capsule of anything down Kathryn (for instance, medications for ear infection). Instead, I assembled my drug administration tools—the tray, the capsule, a spoon, a couple of tablespoons of lemon yogurt, the Ovaltine, a paper towel and my second cup of coffee—and headed up the stairs.

“Kathryn, I’ve got your Ovaltine,” I announced as I entered the room. She was in the exact same position as when I left her. “Scoot over, sweetie.” I settled beside her and brought her up to sitting position. She had the rag doll look, hair mussed, muscles limp, playing possum. I put the cup to her lips.

“Here, smell this. . . . Take a sip.” Her nose twitched. She couldn’t resist. Once she got a few ounces in her, she began to stir. I spooned out a small portion of yogurt, opened the capsule of Depakote and carefully poured the little white beads onto the bed of yogurt, then slipped the spoon once again sideways into the yogurt container. Small waves of yogurt piled up around the perimeter of the spoon to keep the beads from rolling off.

She turned her head away.

“No, no, come on, sweetie,” I said. She frowned. Kathryn practiced one of the few forms of control and manipulation left to her by taking her own sweet time to open up for the medicine. It was easy to understand her stalling, but also easy to get crabby and gruff with her after holding a delivery pose for long minutes. Kathryn wanted and needed to control her world. The more she learned about the world, the more she needed to hold it still, to keep it from spinning out of control, racing beyond her. Stalling and taking time—getting out of bed, getting dressed, exiting the car after a ride, even opening presents—were moments during which Kathryn could slow the world down to her speed, make it bend a bit to her own pace.

Finally, she opened up, and plop, the beads were in. It was not always that easy. Many days she would stammer and push it away, the yogurt and beads falling into a mess on her PJs or sheets. That made me upset on so many levels. First, we needed to merge Kathryn’s pace with our own. Most of the time I felt irritated that we were falling out of step with the day, with the time we had for breakfast, with the schedule for the oncoming school bus, or, at other times, with the friends and classmates who might be waiting for the party to start—Kathryn’s party. And angry, because every day, every night, without fail, we had to administer this entropic contradiction that itself was liable to do long-term damage. And yet there was no other way to manage the multiple conditions affecting Kathryn. Yogurt beads. Little plastic pill organizers. Dental floss hearing aid tethers, Post-its: all small tools we used against the disorder of our life.