Sample Chapter

It not only doesn’t stop the seizures, it makes him irritable and woozy. He drools out the bottom of his mouth, constantly dampening the front collar of his shirts. His 2-year old chin has a perpetual rash from all the saliva.

Then we get a call from another hospital in Los Angeles; a waiting list I got us on several months back finally has an opening with a well-known specialist. We drive over.

She is perfunctory and chilly. Seems like she’s in a rush. She glances through Sam’s records and says he’ll never grow out of it. After twenty minutes, she gets up to go and says we should try more of the third drug — the one that’s made Sam grouchy and drooling. So she didn’t get a good Yelp review. And we’re back to Dr. C.  

He prescribes a fourth anticonvulsant. Nothing changes — different cocktail, same seizures. As expected, the effectiveness of the drugs has dropped off a statistical cliff. It’s coming up on the second anniversary of Sam’s diagnosis and we’ve driven down another cul-de-sac. Is there any way out?

A year ago, talking about brain surgery seemed extreme, but now we’re ready. We go back to UCLA to talk with a renowned surgeon. He looks over Sam’s clipboard, annoyed. I feel like a kid sitting in the principal’s office. 

“You’ve been here before,” he scolds. He chastises us for leaving a year ago, when we were spooked. For being too slow to explore surgery. He shares more statistics: that if we don’t get Sam’s epilepsy under control he could fall behind his peers and stay there for life. We agree to take the next step and schedule a battery of pre-surgical tests.  

A few weeks before Sam’s third birthday, we head back to UCLA for a three-day stay. Once again there’s an EEG and Sam’s head is wrapped up in the shape of a Russian steeple. There’s a PET scan. More hard furniture. And the same hard news. On our last day there, the chief of pediatric neurology shares the test results. Sam is not a good surgical candidate. His electrical activity is not coming from a single address in the brain but from all over the zip code. And you don’t cut away brain tissue unless you’re sure of the seizures’ exact origin. 

We check out, Lori’s step-dad carrying Sam. We walk behind, pulling a roller bag of dirty clothes down the airy, marble hallway endowed by Mattel Toys. 

We walk through the warm brown paneling of the expansive waiting room filled with a dozen families. Fussy siblings are playing on iPads and underneath the furniture. A father in a trade union T-shirt sits motionless, elbows on knees, staring at his big hands knotted in front of him. But almost every mother is on her cell phone, updating the nerve endings of their wider families. We walk by a mom talking quietly, punctuating the call with bullet points she got from the doctor. Not many floors away, a child in an operating room is adrift in anesthesia, a little boat on a dark sea. But she will keep the bulletins coming, she will send the S.O.S. She will keep it together when everyone else is coming apart. Today, like every day, her needs are put aside. She will cry later, by herself, alone. 

I’m back home now, in the dark of their bedroom. Finley sleeps next to Sam, flying to bright planets in his spaceship pajamas. But the landscape of Sam’s dreams is broken by thunderbolts. He is seizing.

I kneel down and stroke his head as it quivers and jerks. I quietly say that he’s going to be okay. But I don’t know if I believe that anymore. I twist my fists into his bedspread and bury my face there. 

In a whisper wet with tears I plead, “Make it stop. Please, heal him. Why don’t you do something?”

I cannot account for what came next, but in my mind I hear a still small voice:

Don’t you understand? He will be great.

Sam gets past the worst of the seizure, the pneumatic hammers in his body finally running out of steam. And in the silence, those quiet words pulse inside me, over and over:

Don’t you understand? He will be great. 

But my own question pounds back: “How? How can someone so broken ever be great?”

From the time he was a baby, I’d spoken my father’s words over Sam, the same nine words that Dad had said to me: Remember, as you go through life, you’re the greatest. 

I’d said it, but did I believe it? Greatness, here? That specialist, she said Sam would never grow out of it. The brain surgeon at UCLA said that Sam could be behind for life. 

Don’t you understand? He will be great. 

Kneeling over Sam’s bed in the stillness, those two phrases keep repeating in a quiet persistence like the soft tone of the homing beacon in Dad’s old Cessna. Dad had explained it to me thirty years ago as we were bumping along through the sky one day. It was the VOR, a radio beam in Morse code sent from small airports that helped him navigate his cross-country flights. 

“As long as I hear that, John,” Dad said, tapping the plane’s dashboard, “we’ll be fine. To stay on course, all I have to do is keep listening for that tone.” When nothing below him looked familiar, he just kept listening for the beacon. 

Don’t you understand? He will be great. 

I’m listening, Dad, but I don’t understand. How will he ever be great?