My daughter was so alive. How can she now be gone?

"I have struggled, since writing a eulogy for my 14-year-old, to use the past tense. How can I apply the past tense to someone so fully present?" Photo / Getty Images

OPINION

In late 2008, toward the end of my pregnancy with Orli, I interviewed the actor Harvey Fierstein, then starring in Hairspray. As I made my way through the crowd backstage at the Neil Simon Theater, past cast members and stage managers, hangers-on and well-wishers, Fierstein caught a glimpse of my belly. “Make way!” he barked, raspily. “This woman is carrying the hopes and dreams of her entire family!” Everyone laughed.

I have thought of that moment often in the bewildering, terrible weeks since Orli’s death, at 14. I have thought of how incredibly buoyant I felt, how much anticipation we all seemed to share.

I thought of that night when I added woeful words to my vocabulary. My partner, Ian, and I are, in Hebrew, “av shakul” and “em shakula” — a bereaved father and mother. In English the term “bereaved” feels polite, even sanitised. I needed a word as crushing as the experience. We are parents who have seen a future stolen. To raise a child is to assume you will leave that child first, but we have buried our firstborn. I have tried to process it through other languages. “Estoy de luto” — I am grieving for all that was, and all that could have been. “Je suis en deuil” — I am in mourning.

Some weeks after Orli was born, I took her along with me on a reporting assignment. She began to fuss. “Who are you going to be, girl?” the man I was interviewing cooed at her. “Who are you going to be?” The world then seemed open, awakened by her newness, with that guileless sense that, as my father assured me early on, I need not fear mucking it all up. After all, we had survived as a species.

All that potential seemed to bear out, too, in Orli, and then later in her sister, Hana — in their temperaments, in their curiosity and, eventually, in their resilience over three and a half years of terrible illness. Orli’s cancer diagnosis didn’t warp the wonder they shared; it sharpened it, made it less random. There were no minor experiences once so many hours of so many weeks had been swallowed up by hospital days of leaden time in airless, fluorescent-lit hallways, endless blood draws and treatments that at times seemed to draw more from the era of barbershop medicine than modern science. Joy could be found in a late-night city walk, a streaming series binge, a bowl of great ramen, a round of laughter, a perfect dandelion puff, a shareable tree swing or in unexpectedly adding an extra night to a vacation. Pride came in the hard-won knowledge Orli would impart to others in how to navigate some of the most impossible things a person can face.

I have struggled, since writing a eulogy for my 14-year-old, to use the past tense. How can I apply the past tense to someone so fully present? So fully herself, so fully formed, so insistently alive? When doctors asked her if it was really her wish to continue treatment, she replied, insistently and with exasperation, “Yes! You’ve given up on me!”

That said, Orli wasn’t fearless. She engaged with fear: She spoke to it, got under it, wanted to understand it, didn’t run from it. She insisted that we, her parents, sit with it and not lie to her about it. She did not want to die, contrary to the fallacy, seemingly held by some of our doctors, that her will to live might fade as her prospects dimmed. Even when cancer robbed her of so much personal agency, of moments of dignity, eventually of her mobility and even, frustratingly, some of her precious words, she did not want to leave this world behind.

In her last weeks, I understood, viscerally, why washing someone’s feet is a holy act.

As our world narrowed, no one could sufficiently explain how to help us — or her — contemplate, without rage or hysteria, the monstrous possibility of death at such a wrong age. We had so much forward momentum for so long, it seemed inconceivable.

Still, at some point, her sense of time seemed to shift: Where once she had talked about college, now she just wanted to go to high school. She asked me why I hadn’t yet enrolled her in summer camp. One visiting hospice doctor, at her bedside, asked her if she had any places she’d still like to see. She told him she wanted to go to Tokyo.

The loss of Orli is a phantom limb that wakes me in the night or, sometimes, lies dormant with me for hours; I never know which will happen. Seeing old friends recently I joked, dry-eyed, about the wonder and terror of the first seven days of Jewish mourning — the shiva — being like a sort of cocktail party in hell. The night before, at a lovely restaurant, apropos of nothing at all, I started weeping into my food and ran to escape the table. I wear only waterproof mascara now.

Her absence is a palpable presence. As Hana said to me, “This is our first May without Orli.” We have already gone on our first road trip without her, taking as a paltry stand-in one of Orli’s beloved stuffed foxes. We each see a new place as we imagine she might see it, old places as she once walked them; we worry over how hard it will be to do the things she desperately wanted to do without her.

There is a blurry quality to time now. The other night, I took a dance class thinking I would focus on movement — until I signed in and realised it was the very studio where Orli danced until she first fell ill. I could see myself there, some 40 months earlier, talking to her teacher about the strange pain keeping my daughter from class.

I am queried, daily, by friends and colleagues about how I’m feeling. I try to explain that I am terrifically, ineffably, surrealistically sad, but I am not always unhappy. Hana, after all, is our joy. But the pain she feels over losing her sister is concrete and multidimensional; it is preoccupied with the altered present and it is aware of a changed future. In the early days, her hurt was so raw we could just barely keep hold of her in its tumult. Hana worried that she was so angry with God that God would be angry with her. We explained to her that we come from a tradition of questioning and of confronting God. We reassured her: We are all angry. She is, after all, only 9. She still needs us to run with her to the park, to continue to experience the world anew. We cannot sink. We must all float together.

The peculiarity of grieving an adolescent is that there is still so much Orli to absorb. Some of it comes by way of anecdotes offered by friends and acquaintances, some from her written journals. A vast majority of it is from her phone, which is alive with her photos and videos, beginnings of stories she wrote, with talent and snark, with worldly observations, with anger. The Orli in her phone isn’t bound by the terrible chronology of her illness; she can walk, she can dance, she can narrate her own story. I sometimes miss her phone when I am away from it. I crave it. I dole it out to myself in tiny doses.

But the stories in Orli’s phone are finite. I have all the Orli photos I will ever have. I can only look backward.

Nor can I change what remained for her unresolved. I cannot finish the stories she started writing, answer the texts that remain unanswered. I cannot demand engagement from those who had stopped engaging.

“I haven’t had one full year since this began,” she told me a few weeks before she died, meaning a year exclusively devoted to school and childhood, free from those hospital hallways, from surgery and radiation, chemotherapy and blood draws and fear. She once told me life had ended for her when cancer began. But that wasn’t really true. She lived every moment hugely. It just was no longer entirely a life of her choosing, or ours. Orli knew that she was both more mature than her peers and missing out on all the things that make a childhood a childhood and allow one to mature to maturity.

A few weeks after the funeral, I dreamed that my wallet was stolen. I begged everyone around me to return it, irrationally crying about how I had also lost my daughter. When I woke, I realised the wallet I described in the dream — a small, zippered, purple bag with “Steve’s Packs Jerusalem” on it — was the one I carried the year I turned 20, when my life, all potential and theoretical joy, was in front of me. Back then, I knew nothing of this pain, this feeling I have sometimes of walking around with no dermal layer protecting me from the world at all. In the dream, Orli’s wallet was returned to me instead of my own.

In the heartbreaking time since she left us, we have struggled to understand how it’s possible such a big life is no longer here. I have taken some comfort in knowing, the night before she died, that her final words were to tell her sister she loved her. I have taken some comfort in knowing how we all whispered to her, again and again and again, that we loved her, even in those last moments, even as I felt her leaving me. I lay with her for hours after she was gone, knowing I would never have the chance again, until Ian had to gently tell me it was time to let the men from the funeral home in.

Recently, several people quietly told me that she had helped them in some way, inspired them or helped them with their pain. If she could continue to engage, to be concerned beyond herself, they could, too. Her instinct was always to assist, to write to the kid on the other side of the country struggling with chemo-related hair loss, to find out if a friend’s sibling headed to the hospital needed advice on how to navigate hospital time, to see if a newly diagnosed child wanted tips on making life in cancer care more bearable, or even to encourage someone going through a divorce to dance. And so, even when I’m crushed with grief, Orli continues to teach me. Some of the lessons are basic but worth repeating: It matters to reach out, over and over, even in minor ways. It matters to visit. It matters to care.

Shockingly, I still wake each morning. In the first moments of each day a part of me still wonders if somehow reality will realign or if this new disorder is here to stay. The honour of Orli’s physical presence was only ours for 14 years. But her immediacy, her insouciance, her joy and her pain are ours forever, even if we live another 50 years without her.

This article originally appeared in The New York Times.

Written by: Sarah Wildman

Photographs by: Karlotta Freier

©2023 THE NEW YORK TIMES