Guest post by Dani Shapiro
It happened in stages. First, I saw something in my baby—a small, involuntary twitch accompanied by a flickering in his eyes that made me uneasy. No, that’s not exactly right. The uneasiness was so deep, so internal, like something dredged from a place inside of me so dark and hidden I hadn’t even known it existed. Something’s not right.
I called his pediatrician.
She cooed over the phone—a placating tone cultivated by certain doctors who assume that all new mothers are hysterical. She told me she was sure it was nothing. All babies twitch. If he’s still doing it by the time he’s, say, eight months old, we’ll look into it.
I tried to believe the doctor—God knows, I wanted to believe the doctor—but deep down, the uneasiness persisted. We were living in Brooklyn at the time, and each day I pushed my boy in his stroller to the park. I swung him on the kiddie swing. I perched him on the edge of the sandbox. I gaily called out wheeeee! as I held him, sliding on his chubbly little bum down the slide. But all the while, something was thrumming, something that had begun to assume a shape inside of me. White hot, sharp. A blade of terror.
A week after I first called the pediatrician with my concerns, in an entirely unrelated incident—if we are to believe that incidents are ever entirely unrelated—a brand-new babysitter dropped him down a flight of stairs. We lived, as I said, in Brooklyn. In an 1850 Federal townhouse with a very steep set of eighteen stairs. The babysitter slipped. He hit his head. He was rushed to the emergency room in Brooklyn, then transferred by ambulance to a hospital in Manhattan where he was observed overnight. A CT scan showed a bruise on his brain.
Among the handful of moments in my life for which I am most grateful, surely I count this one: I had seen those small flickers, those twitches, those involuntary movements before he was dropped on his head. Otherwise, for the rest of my life, I would have wondered. Did the fall cause the seizures? Was it—somehow, in some tiny way, by dint of hiring a particular babysitter, buying a particular house—my fault? No. I knew that these two facts were unrelated. Something was wrong with my baby. And he was dropped down the stairs. Two impossible facts, pressed side by side like withered leaves.
I hesitate to even write our story on Ronan’s blog. Our story—I should say at the outset—had an unlikely, improbably, perhaps I should even use the word miraculous, ending. Our rather, outcome. Happy endings are the stuff of fairy tales. My son, at age six months, after surviving being dropped on his head, was diagnosed with a rare seizure disorder called Infantile Spasms. Seven out of a million babies are stricken. Fifteen percent survive.
Seven out of a million. Fifteen percent.
The enormous, profound difference, of course, between my son’s story and Ronan’s, is that fifteen percent. There was hope, however small. That white hot, sharp blade of terror because a white hot, sharp blade of hope. I clung to it. I prayed, bargained, developed every manner of superstitious habit. There were experimental therapies, theories up the wazoo. A drug that wasn’t FDA-approved, shipped from a pharmacy in Canada. A courageous doctor who wasn’t afraid of being sued later for malpractice. Plain, dumb luck. All of this amounted to our boy ending up being in that fifteen percent.
I remember, during those dark months of titrating doses and watching my baby like a mother eagle, noticing a twelve year old girl sitting between her parents in the waiting room of the pediatric neurologist who saved our son’s life. The girl was clearly compromised. Mentally-challenged in severe ways. When we went into the doctor’s office, he told us that the girl had been an Infantile Spasms baby. Her pediatrician had missed the signs, just as ours had. The parents waited too long, and by the time she was diagnosed, there was no hope.
Today my son is twelve years old. He’s a tennis playing, computer-loving, rock musician with a beautiful voice. He’s a kind, gentle soul. He is loved, perhaps to distraction, by his two parents who nearly lost him. Nearly twelve years, and I no longer worry that the other shoe will drop. That all of this—his recovery, our good fortune—has been a mirage. But still, sometimes my husband and I look at each other over the top of his head and I know we’re both thinking some version of oh, thank god, thank god, thank god.
But here too, is where it all grows impossibly tangled. What does it even mean, to thank God? I no more believe that God saved my son than I believe that God caused his illness in the first place. I prayed when my baby was sick, but it was just one more thing to do. I wanted to cover all my bases, in the event that someone up there was actually listening. What I have come to believe is in the chaos and randomness of life, and the shape that we make out of that chaos and randomess. We cannot control what we’re given, but we can control our responses to what we’ve been given. Our only agency is in what we do, how we think, how we react, who we become. We make meaning out of everything life hands us. Everything.
I don’t read blogs. I really don’t. But when a dear friend, a yoga teacher in Santa Monica, suggested that I take a look at Little Seal, I did—and I have not been able to tear myself away ever since. The writing is magnificent. Without question, Emily Rapp possesses a staggering literary gift. But her gifts—the more important ones, the ones that will see her through—have to do with this very quality of…what to call it…spirit? Luminosity? Courage, certainly, though my guess is that she would say that courage is bullshit. That there is no other way. But of course there are many other ways. There is resistance, blindness, why-me-ness, rage turned into a fortress of solitude. There is blame, recrimination, paralysis. This year, in synagogue on Yom Kippur, I noticed for the first time on the list of sins for which we were all meant to atone, the sin of succumbing to despair. That’s what I don’t see here in this saddest of stories. I don’t see people who are succumbing to despair, but rather, who are charging into gale force winds, naked, raw, vulnerable, alive. They are loving their little boy and making every day he spends on this earth one in which hearts are reaching out and touching his. People can spend their whole lives not feeling this. Ronan’s little toddler heart gets to feel this broken Hallelujah every day.
Dani Shapiro is the bestselling author of the memoirs Devotion and Slow Motion, and five novels including Black & White and Family History. Follow Dani on her website and on Twitter.