‘Sanctuary: A Memoir,’ by Emily Rapp Black: An Excerpt
This Particular Fire
My three-year-old daughter, Charlie, screams for twenty uninterrupted minutes after I break her graham cracker at snack time. She asks instead for white rice, and it must be “ice cold,” but the ice cubes used to chill it (a process she supervises) can no longer be present or even in view at the time of delivery in the bowl, which must be pink, and which she must select herself from the drawer where I keep her collection of plastic dishes. “I do it!” she insists, a statement she repeats countless times a day, often stomping a tiny foot and crossing her arms, like a parody of toddler behavior, only she is quite serious. I remind myself she can do it; let her do it. This, the teachers at her Montessori school have assured me, is the best way to foster independence, that essential building block of human development. “Development”: a word that once made me hollow with sadness.
My experience caring for Ronan was so different, so quiet, all of the activity internal: the pain of watching him worsen and fade; the constant, wrenching speculation (Was he hurting? Was he worsening? Were we closer to the end, and what came after? Was that a seizure or just a hiccup or a giggle?), that I’m learning for the first time how to be a mother to a child who is independent and will continue to be so; a child who I hope will live a long life and attend my funeral and scatter my ashes in a place of her choosing, as is the right order of things, or at least the order we think we sign up for when or if we start families.
[ Return to the review of “Sanctuary.” ]
Ronan was my silent, sweet companion. Charlie talks back, has opinions, ideas, moods, and so many strongly felt emotions that she can express and sometimes name. “I feel lost,” she tells me almost wistfully when she’s confused, and sometimes, “I’m sad,” when she gets pushed at school and she “pushed back so strong” but then clearly feels bad about her actions; or, in New York City, in a hotel room all to ourselves visiting friends, “This is so fun and I’m so happy!” In moments like these, the shift from one parenting experience to another is jarring; the adjustment knocks me off kilter, like a top spinning wildly on a table and falling to the floor, spinning still.
Charlie and I eat the rice and sing “Gorilla in the Sky” (original lyrics and three-line score by me) and then we’re off to the grocery store, where I buy Charlie a twenty-dollar enormous princess castle Mylar balloon in exchange for the promise that she will please stay buckled in the cart for thirty minutes while I race through the aisles getting only half of what’s on the list, in addition to much that’s not on it: a massive cupcake topped with a fist of whipped cream and bright pink candy sprinkles; a box as big as a brick of Goldfish crackers; and bubble bath that makes popping noises as it dissolves in the water, creating a shade of blue that looks like toxic sludge. “I won’t drink it!” she promises.
As soon as we arrive home and are headed up the back stairs, stopping to look at lizards, checking out the many birdhouses left in the yard by the previous owners, calling out for Meatball, the stray cat Charlie has named and who we sometimes see skulking through the yard, searching for the tuna and sardines we leave for him on a pink plastic plate, Charlie gets distracted and releases her balloon. “No, wait!” I shout, as if the balloon will mind me. I drop the grocery bags in an effort to save the shiny pink castle from floating up to the top of the tallest palm tree in our wild Southern California yard, where it rocks in the slight breeze, taunting Charlie, the four princesses—Ariel, Rapunzel, Jasmine, Cinderella—slowly rotating past her vision.
“Princesses, no!” Charlie cries, as if they have failed to invite her to the party in the tree. She turns to me. “Why Why Why can’t you get it? You’re tall! Why?” She stands on her tiptoes and reaches upward with her sticky, sweaty hands, sobbing. After fifteen minutes that feel like a hundred, I am able to coax her, sweating and sniffling and practically hyperventilating, off the porch, where the temperature hovers around 107 degrees. I collect the scattered groceries and pile them on the table, toss the raft of broken eggs in the trash, put the battered milk carton in the refrigerator, and return to a despondent little girl, sitting on the couch with her hands in her lap, silent and sad, floating in an existential, tear-swamped toddler daze. I try every distraction and consolation—songs about fairies, twinkling stars, and swimming turtles. I attempt to soothe with mom dream logic: “Maybe the balloon will float down again!” “Isn’t it so fun to look at the princesses having a tea party high up in the trees?” “It’s like a castle in the sky!” “How special and fun!”
Charlie anchors her head over my shoulder and sobs inconsolably.
If I were a member of any mothering blogs or groups, which I am not, I might start a post with a faux-exasperated “OMG” and title it “Life with a ‘Threenager.’ ” I’m not in these groups because I worry that the “normal” concerns of this mother of Charlie, who is alive and thriving, will make me forget the mother of Ronan, who is gone (isn’t she?), so I stay in the parenting online communities where I do feel at home and where I am a member: those populated by women whose children have died, primarily from Tay-Sachs or similar diseases, but the club remains open to any parent who has experienced this particular life-splitting, identity-shifting, world-defining loss. These mothers post updates like When he’s really sad, my husband starts building fences. He’s out there for hours, pounding posts into the ground. The thing is, we don’t need any more fences; or this: I feel like sadness is rot ting me from the inside out. Crisis makes sense to me, but not the kind that many people experience with their children: broken arms, broken hearts, a bad grade on a test, a high fever that eventually breaks.
Instead, I’m more accustomed to and comfortable with the daily, often moment-to-moment crisis assessments of palliative care and hospice: the dread of inevitable death, the complicated machinery and endless paperwork of the hopelessly sick and terminally ill, nurses and doctors traipsing in and out of the house, trying to determine the “time line,” which is code for “how much time is left.” A typical toddler tantrum feels illogical and foreign, but also unremarkable. I don’t belong in either community of mothers, not completely. I am no longer just a bereaved parent, but a bereaved parent with a living child. At Tay-Sachs family conferences, there is usually a moment when we are asked to identify ourselves: Who is bereaved? Whose child is living? I stand at the threshold between these two identities, and am beginning to understand that I always will. But will it always feel this awkward? Sometimes I’m uncomfortable, sometimes confused, sometimes proud, and sometimes totally numb because I can’t hold all of the emotions at once. Guilt is like a blanket I drag around and sleep under and never wash. There is no predicting when one of these emotions will arise and how long it will last.
[ Return to the review of “Sanctuary.” ]
When Kent arrives home from work a few minutes later, after a ten-hour workday as editor of a regional magazine and a forty-minute commute in each direction, Charlie is heaped in my lap, hair damp with sweat, face tear-streaked and red. “Balloon,” she whispers plaintively every few seconds and then snuggles into my armpit.
“What happened?” Kent asks, looking around. I sense his irritation, and I feel it, too. In the hour I try to reserve daily to contain the damage an active toddler can make, I’ve been reading favorite books, offering Popsicles, producing magic wands—all the crowd favorites. As a result, unwashed dishes sit in the sink gathering stink and crust; the kitchen floor is littered with dried-up spaghetti that feels like being poked with knives if you happen to step on it; books and checkers and Lego and pieces of cheap plastic toys are scattered everywhere; a few plastic cars precariously block entrances to rooms, one with a stuck horn playing the theme song from Frozen with a fading battery that renders it a funereal dirge. I feel inept and undone. I feel ashamed.
“Balloon,” I say without thinking, and the wailing starts up again in earnest, with this new and highly sympathetic audience of one: Daddy. He runs over and scoops her up. The teachers at school gather in the doorway to watch Kent drop Charlie off in the morning. He hugs her, asks for another hug, another kiss, then she asks for another hug, another kiss, “Have me!” she cries, and then he waits and watches as she gallops into her friend group, his eyes brimming with tears. “Sometimes dads are anxious to get away,” her teacher told me. “They just drop and go. But we love to watch how much he loves his girl.”
With Charlie on his hip, Kent pours two big fingers of whiskey into a fat crystal glass at the sideboard. “Poor girlie,” he says. She sniffles. And then, about the car, he asks, “Can you turn that thing off?”
“First,” I reply, suddenly fuming, “I need to be able to get off the couch.” I am a hot ball of irritation.
Charlie jumps from Kent’s arms, and quickly forgetting the tragic events of the previous hour, opens the front door and solemnly reports that “someone is in trouble,” her favorite game to play. “It’s an emergency!” she cries gleefully, stumbling slightly over those last two syllables. In this game, one stuffed animal is tied up in a string or a cloth belt from one of my dresses and then dangled over the side of the porch to save the toy in trouble (alien toy, a member of the Paw Patrol, an occasional Barbie, although this last toy I’d prefer to leave in the dirt).
I sit perfectly still, feeling the sweat cool against my skin, my thighs stuck to the leather couch cushions.
“You okay?” Kent asks. “Why don’t you relax while I go help save some animals?” (Or, as Charlie says, “the aminals.”) I nod. He and Charlie make their way to the porch. The grandfather clock marks out the time evenly behind me. I listen to Charlie instruct her father about exactly how to lower the pink doggy on the rope to save the stuffed owl, who has broken his eye. “Not his wing?” I hear Kent ask. No, it’s his eye. Her sweet, almost cartoonish voice; his deep voice.The mix of their laughter.
I know what I have: this beautiful girl whom, four years ago, I never could have imagined. I didn’t look at the developmental milestones chart when Ronan was alive because I knew he’d never meet them; with Charlie, who is smart, beautiful, healthy, funny, kind, and curious, I don’t look at the charts because I know I don’t have to worry about it. She loves books, has full conversations (and heated arguments) with us, and is, as her teacher reported during her school conference, “a really good friend.” She’s the child I always wanted (of course, so is everybody’s child), but it doesn’t mean I wanted Ronan less, even after his diagnosis, or that I miss him less, even though Charlie would not exist if Ronan had been healthy, if he had lived, or if he’d had the single enzyme programmed into his tangle of DNA that would have saved his life. Two halves of one life, the C-section incision out of which both children were lifted, two bodies from a body cut at its center. The two mothers.
Ronan was, in fact, the one who led me to Kent, the father of this girl who wouldn’t exist if her brother were not lost to me. A journalist, Kent had read a piece I’d written about Ronan while he was still living, but already blind and entering a period of drastic decline, and his father and I had been split for some time. Kent asked me to lunch. I hadn’t realized we were Facebook friends. “Look at all that hair!” my friend Lisa said when I told her Kent and I had a kind-of date. “And he’s right in your age bracket!”
We met at a Santa Fe café famous for blue cornmeal pancakes and strong, sweet coffee. Kent was wearing his sunglasses on a string around his neck, and he did have fantastic salt-and-pepper hair, tons of it. He was tall and solid and wore cowboy boots with his initials (KB) stitched on the back of each. The first thing he said to me was “I just had a dream where all of my teeth fell out. What do you think it means?” I laughed, really laughed, for the first time in two years, a feeling so unfamiliar it made me blush. “You’re anxious?” I responded, feeling this new and strange lightness. “Oh, totally,” he said. “Who isn’t?”
A few weeks later, on our first “night” date (“That makes it definitely a date-date,” Lisa mused), Kent asked me how my family had supported me, and I told him that my parents had been amazing, but others had withdrawn, finding it “too hard,” or “not knowing what to say.” Kent considered for a moment over his drink (which he insisted later was watered down), looked up at me with bright, clear blue eyes, and said, “That must feel like a betrayal. That’s really hard.” Exactly. We had dinner (he forgot his glasses so I had to read the menu and the bill aloud to him), and I learned that he was twenty years older than I (fifty-eight, not forty-eight, and far out of what I considered to be my acceptable dating age bracket) and was getting ready to leave Santa Fe (he owned a hundred-year-old church he had grown weary of endlessly renovating). He was an excellent listener, even when I was so nervous, talking so fast. When we walked back to his car parked in front of the Hotel Saint Francis, we noticed it had a dent in the side. A hit and run. “What do you think it means?” he asked. “Worlds collide!” I offered. He laughed.
I was smitten, for sure, but it was when I introduced Kent to Ronan that I understood I was falling in love against reason and all the odds. Kent walked right up to Ronan, who was immobile then, sitting propped up in his high chair, where he spent a great deal of time. Kent knelt down, touched Ronan’s feet and then his hands, and said, “Oh, hey there, buddy. You’re a big guy, aren’t you?” and then he kissed his face. It was a father’s voice, from a man who had always wanted to have children.
Just as trauma and grief unmake the world, love remakes it. This family life—Kent’s, Charlotte’s, and mine—so traditional, seemingly so effortless for others—was everything I thought I’d never have only three short years ago, so how can I possibly become so undone and unnerved by a temper tantrum, a lost balloon, or a ruined carton of eggs? Who cares? This is trivial business compared to my other parenting experience: seizure meds in small syringes, the liquid parceled out in millimeters; dread like a wall to climb over every morning; and hospice nurses and oxygen and suction machines and hours spent watching my child wither and fade from Tay-Sachs disease. I survived the death of my child and now I’m losing my shit over normal toddler behavior and feeling stressed out by a stack of dirty dishes? Sure, an annoying day, but not an unbearable one, which certainly described some of the toughest days with Ronan, including the day of his death, and yet I had borne them because there had been no other choice. Ronan taught me that life is about being present with each moment, that the future is a mystery, the past is unfixable, and that it’s in the present where we truly live and thrive. Everything else is unreal, ephemeral, and more often than not, a lie. Ronan was my teacher, my guru, my first baby, my boy. I feel ungrateful, unaware, ridiculous, guilty. Have I so quickly unlearned all the lessons that being his mother taught me?
When Ronan was alive, I would have given anything for a day like this. My response to any parent who told a story similar to the one I’ve just described would have been anger and desperation (and, I must admit, delivered smugly, and meant to land like a wound): “You should be so lucky to be irritated by a tantrum. At least your kid isn’t dying.” This was a highly effective way to stop the conversation, which was precisely the point. I couldn’t bear the mundane stories about people’s normal struggles on the planet of parenthood from which I had been, I believed, permanently exiled.
The two lives I have lived in such close proximity to each other—in the span of two years losing a child and a marriage, then marrying again and having another child, one life braiding with the other, sometimes colliding, getting tangled together—hits me with a physical, full-body wallop.
[ Return to the review of “Sanctuary.” ]
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