People tend to ask me if I feel I've replaced my son with my daughter. Of course, that's not the case. Here is my definition of resilience.

Advertisement
An illustration of a mom and her children walking.
Credit: Illustration: Caitlin-Marie Miner Ong.

After my daughter Charlie was born, people asked me if I felt I had replaced my son Ronan the way they thought I had replaced one sad life with a happy one. As if people or relationships are pieces on a board in some weird game of life checkers or grief chess. 

A ridiculous idea, but not uncommon, I discovered; I realized that this notion, too, is linked to our faulty conception of resilience. 

What I wanted to tell these well-meaning people was this: When Ronan was 18 months old, exactly 9 months after his Tay-Sachs diagnosis, he was strapped into a special therapy suit called a Thera-Tog—strips of bendable fabric that held him together, like the pieces of a pattern. 

Then, for a single bright and staggering moment, for the first and only time, he stood on his own feet. The wonder that crossed his face was for me, his mother, both remarkable and wrenching, as I knew it was possibly the only moment of joy he would ever have in his body. 

I would never know how he felt about it, because he would never have the ability to tell me. 

Watching Charlie, at the same age, stand with ease, and then run, and then talk, and then climb over rocks and water flowers and chase butterflies and swim, her presence does not replace or erase his, but only evokes his absence more deeply, and often makes me feel guilty, or strange, or unworthy, or simply as if I'm floating above my own unreal life. 

The author and her daughter.
Author Emily Rapp Black and her daughter.
| Credit: Courtesy of Emily Rapp Black

Redefining resilience—seeing it anew—has helped me make sense of my life, which brings with it an uneasy peace that is better, at least, than a raging confusion. What a great relief to understand, or to work to believe, as was the case with me, that resilience isn't a matter of flying over the mountain of grief into a new life; in fact, there is no willful action at all. Instead, a person dwells in the doorway, holding both lives, one on either side, trembling with grief and gratitude. 

Riding the rails, as it were, as I once did as a teenager. We are all of us tricksters. It's how we live. 

When Charlie is 4, I take her with me to London to visit my best friend Emily. The two of them pretend to drive the double-decker bus from the top deck. I remember Emily sitting at the big wooden table in the church sanctuary, eating soup just a few weeks after Ronan died. We smoked cigarettes at the table and I had no appetite. I remember the first time I met her, the blue hat that matched her blue eyes, she was so rainsoaked she left puddles in her wake as she crossed the pub, waving and smiling at me as if she recognized me. 

I sit behind Emily and Charlie as the bus rattles and twists through the lit, rain-slicked streets of London, marveling. Em's curly brown hair spins ringlets around the edge of her hat. Charlie refuses to let anyone brush her hair, so it sits in a messy topknot, the bleached ends like a white feather balanced at the top. "Go right! Don't hit that guy on the bike!" Charlie shouts, and she and Emily pretend to struggle to turn the pretend steering wheel they both pretend to share. 

Charlie is so alive, but she is not in Ronan's place, not a "replacement child." Instead, she is living her life alongside him, if you count memory as a living thing. Maybe he's the cyclist who grabs the edge of the bus to get a bit of speed going around the corner. Maybe he's the boy we pass waiting in the bus shelter, rain water falling around him. One dead child. One living child. 

These simple facts are full of mysteries so wholly complicated and complex that the smartest scientists have not yet found a way to unravel them. We know about dark matter, but we don't know how to see it, to detect it, to prove it. The work of resilience is to embrace the opposites; to be the trickster; to dwell in that middle place, in the moment between the doors swinging open and then swinging shut. James Baldwin wrote: "Any real change implies the breakup of the world as one has always known it, the loss of all that gave one an identity, the end of safety." 

Loss of identity is not loss of life. We don't always need to know who we are or why things end in order to live; sometimes it might be more bearable if we don't. Hope, like the study of dark matter, is always about proving the unseen, and often the not yet known.

Excerpted from Sanctuary: A Memoir by Emily Rapp Black Copyright © 2021 by Emily Black Rapp. Excerpted by permission of Random House, an imprint and division of Penguin Random House LLC, New York. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.