Yom Kippur services this year will have a haze of death and illness lingering over our prayers. The holiday has always been a solemn occasion to fast, reflect on the previous year, and contemplate the uncertainties of the future. Four years ago, holding my terminally ill 1-year-old daughter on my lap, I listened to the sounds of the opening prayer, the Kol Nidre, and felt the immediacy of the Jewish history of suffering and survival. My daughter was suffering from Tay-Sachs, a rare disease with a direct genetic connection to the close-knit Jewish community. Together we sat, Talia squeezed into a red dress with ruffles, despite my fear that it would make her look too cute and therefore it would hurt too much for me to look at her. I contemplated a future that was certain to include her demise. I searched that day of reflection for a way to survive.
As I held her, we watched an elderly man on the bimah, the stage at the front of the sanctuary, hold the so-called Holocaust Torah that is our synagogue’s prized possession. This Torah, saved from a town in Czechoslovakia before it had a chance to be destroyed, is one of many such Torahs that adorn synagogues in America. These precious scrolls represent a physical manifestation of the suffering that our people — including Talia’s great-grandmother Lola, now 90, who spent part of her childhood in Auschwitz — have endured. On my lap, my mostly immobile daughter represented another one.
In the 1970s, before the first Tay-Sachs screening test was created and utilized to great success in the Jewish community, about 60 children in America were born with Tay-Sachs every year. Today, because pre-conception screening is not common in all communities, 10 to 15 children, mostly non-Jews, are still diagnosed with the disease each year. These children can love and laugh, but not much else. Like adults with Alzheimer’s, they live lesser versions of themselves daily. Depending on medical intervention, affected children die between the ages of 2 and 5.
Talia’s existence, and the inaccurate screening test on which I had relied, sometimes felt like a betrayal of the Jewish narrative that we can overcome any adversary. The day after her diagnosis, I found a New York Times article that said with the help of genetic tests, Jews had “virtually eradicated” the disease from their ranks. My daughter existed inside that small word “virtually.”
As we recited the holiest prayer of the year, the Unetanah Tokef, I held Talia close and said nothing. The prayer is about God’s decree for the year. “On Rosh Hashanah, it is inscribed, on Yom Kippur it is sealed: How many shall pass away and how many shall be born; who shall live and who shall die.” Then the rabbi intones the various ways in which someone could die: by fire or by water, by earthquake or by plague. I could barely breathe when we reached the line “who by hunger and who by thirst.” In prior years, when I was not actively watching my daughter lose the ability to swallow, this line had simply passed unnoticed. The end of the prayer avows that acts of repentance, prayer, and charity can temper the severity of the decree.
I lifted Talia’s droopy, curly-haired head to my nose and breathed in her scent. What should I pray for that year, I wondered. I couldn’t pray for Talia to live another healthy year — there are no treatments for Tay-Sachs. We had simply been told to take her home and enjoy her for as long as possible. So how could I temper the severity of that decree?
Talia fell asleep as soon as the rabbi started talking. A few of the elderly congregants followed her example. Her presence in my arms made every word the rabbi said both holier and hollower.
My daughter startled herself awake when the special Torah was lifted into the air. As I calmed her, I thought of the suffering her great-grandmother Lola had experienced at the hands of the Nazis. In the camp where she was brought as a teenager to die, she had lived, against all odds, and gone on to become great-grandmother to one little girl whose family needed all the lessons of survival that she had to give.
After Talia’s death, I finally spoke with Lola about how to survive the unimaginable, and she told me with pride that her mother did her best to maintain some normalcy in the camp: finding a comb and making sure that when Lola’s hair grew back, it was always combed; fashioning a knife out of a piece of scrap and using it to cut their bread ration rather than tearing it like an animal. Later in Talia’s disease, when I had to force myself to change Talia out of pajamas or remind myself to speak to her despite her inability to respond, I too was trying to maintain humanity in the face of an inhuman situation.
The lessons I learned of maintaining normalcy in extreme situations continue now to guide my parenting of Talia’s siblings through this pandemic. Acknowledging that death exists, be it from a DNA mutation, state-sanctioned murder, or uncontrolled virus particles in the air, is the first step toward accepting that some things in the world are beyond our control. On that Yom Kippur with Talia on my lap, ultimately I prayed only for the strength to survive whatever would come.
This year I will watch Yom Kippur services on my computer, probably in yoga pants and with unbrushed hair. I will miss the collective spirit that fills the sanctuary as I try, and probably fail, to re-create at home some of the holiday’s solemnity. I will be thankful this year for Lola’s continuing presence in our lives, as we almost lost her to the coronavirus. I will recall Talia’s short, impactful life. This year I will remember to live each day like it matters, to be kind to myself, and to smile at the small moments. I don’t have a guarantee who shall live and who shall die, but I do know that with strength and history as our guide, my family, and yours, can temper the severity of any decree.
Carla Steckman, an author in New York state, has recently completed a memoir about parenting on the tightrope between life and death.