In my family, we talk about hard things.
That’s not to say we are morose. We are not. Nor are we particularly profound. If anything, we lean into the ridiculous, and the silly, whenever possible.
At the same time, in over three years of managing our daughter Orli’s liver cancer, we have had to navigate the unimaginable, and also translate it to our children. Each stage seemed, at first, impossible on its own: diagnosis, chemotherapy, organ transplant, surgeries removing metastases in her lungs and brain, radiation, weeks of hospitalizations. Through it all, my partner, Ian, and I have attempted to meet both our children at the point between frankness and oversharing, optimism and reality. There is a weirdly direct line between despair and joy, between clarity and too much information.
To be clear, I am not particularly conversant in how to discuss the hardest subjects with adults, let alone a newly minted 14-year-old and her 9-year-old sister. (They were 10 and 6 when all this began.) My first impulse is not to face anything at all; the very idea of anything other than optimism makes me want to scream. But these days the consequences of Orli’s disease have become palpably more complicated, altering our days and our nights. We have stopped talking about a cure.
At the end of September, as she endured more radiation and before she (briefly) received a drug in trials, Orli stopped attending school. It was temporary, but then she stopped worrying about falling behind and we stopped asking when she would return.
In the late fall I took the girls to the movies and the theater as often as I could, to step away for a few hours from the medicalized monotony of daily life. (We would go to the theater at off hours, to empty movie houses; we still wear masks.)
It was, even then, no longer a simple matter. We took a wheelchair for Orli to navigate the multiplex, scheduled her medications so she wouldn’t be too sleepy. For a time, we also brought an oxygen tank.
One afternoon I took Orli, alone, to see “She Said,” the film adaptation of Jodi Kantor and Megan Twohey’s book about the brave women who confronted Harvey Weinstein. Orli told me after, over pho, that “She Said” was far scarier than “The Menu,” the dark but cheeky movie that she, Ian and I had caught two days prior. “This,” she said of the Weinstein horror, “was real.”
Later that week we saw a friend of Orli’s, and the girl’s mother. I recommended our recent films, and “She Said” in particular.
“Isn’t that very mature content?” the mother asked. I was taken aback. “Our life,” I answered, admittedly with some pique, “is very mature content.”
In my family, I wanted to explain, we talk about hard things, and not in the abstract. I cannot shield my children, as much as I have desperately wanted to try.
When I stopped bristling, I realized that many eighth graders may not be ready to be immersed in a true-life story of sexual harassment and abuse. Orli is uniquely interested in understanding how hard the world can be. She often asks nurses to describe the worst things they have ever seen. She means it: She wants cinéma vérité and gore and (whenever possible) triumph. For us, discussing the cruelty and violence at the core of “She Said” not only resulted in an important conversation about power and consent, it allowed us to shift perspective: Other people experience hardship. We are not alone.
In these years as cancer caregivers, we have often been told how brave we all are. I always find the sentiment lovely but misplaced. Bravery implies some agency in the matter. And what choice do we have? We have spent the last 38 months putting one foot in front of the other.
That is, until walking itself was no longer an option. On New Year’s Eve, Orli experienced two seizures, back to back. She was in septic shock. It took seven days for her infection to begin to respond to medication.
Then, days shy of her 14th birthday, her legs were suddenly unstable, unusable, coltlike. A scan revealed a tumor compressing her spinal cord. The next day she started a new round of radiation, in the hopes of regaining mobility.
Every other night, Ian and I would trade off hospital for home to console her sister, Hana. We had no great assurances to give either girl other than that we were doing all we could.
After spending the first 19 days of 2023 in the hospital, Orli is in her own bed now; ramps now half encircle our home. We exercise her legs every few hours, and are working with a physical therapist. We cheer her on when she moves her feet or toes or bends her knees herself. (She has always proved naysayers wrong.)
But Orli just wants a firm promise that she’ll regain autonomy, and at the very least a return to where we were on Dec. 30, before this latest indignity.
It is not the first time we have been in what rabbis call the meitzar, the biblical narrow place — a place of compression. The meitzar is an expression of all the things that can make life impossibly hard. It appears in Psalm 118: From the narrow place I called to God, the psalm says; I was answered, it continues, from expansiveness. We are constantly seeking moments of that expansiveness, to take a deeper breath. A colleague of Ian’s flew from South Carolina, to lay on of hands for Orli, as powerful a prayer as I have ever seen. “What if it doesn’t work?” Orli asked. “And she is sad?”
The doctors advise us to enjoy her being home. What do you want? they ask. And I say: I want graduation. I want her to fall in love. I want her to come home from college and tell me she can’t believe how disorganized I am when she just reorganized these cabinets. Throughout these three years I have had one selfish wish: Just let me keep her, I think. I just want to keep her.
We do not know if we are now stable, or, if we are, how long that will last. The girls ask me about disease and the next treatment, and what happens when there is no cure. Orli just wants to go to high school. Hana tells me she doesn’t want to be alone. I tell them I wish they did not have to ask me these questions or have these thoughts. Mostly we do not dwell in this impossible, narrow place, we only are here: handing out medicines, hoping to walk and return to the world. I tell them I wish I had answers. I tell them that I feel like I am failing all the time.
And yet I have not abandoned hope, even though I am in a place defined by unknowing. Ian and I can no longer offer ourselves — let alone our children — the comfort of certainty. We can only present them with our presence, our frailty and our honesty.
My daughters have pulled back the curtain to see that I am the false wizard, that I can offer no promises to them other than to point out the courage and wisdom and heart they already possess. All parents face this moment at some point, but I would have hoped to wait.
My worries hover in the back of my mind, keeping me awake in the dark hours poetically called madrugada in Spanish — the time before the dawn, when the world is quiet. I try not to share those worries with my daughters. That is not the honesty they need. Instead, they bubble up when I break a glass or burn dinner or stumble in any one of a million ways; then I am the kettle screaming to be removed from the heat.
For now, all I can promise is that I, unlike the wizard, will not step into the basket of a hot-air balloon and fly away.
Sarah Wildman is a staff editor and writer in Opinion. She is the author of “Paper Love: Searching for the Girl My Grandfather Left Behind.”
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