Myra Sack

Life and death in ‘Fifty-seven Fridays’

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Life and death in ‘Fifty-seven Fridays’

Myra Sack

Two years, four months and 16 days.

That’s how long Havi Lev Goldstein lived.

Only about 5,000 Americans, almost all of them from Ashkenazi Jewish heritage, have the rare central nervous system disorder of Tay-Sachs disease. Havi was one of them.

And after she died, her mother, Myra Sack, wrote “Fifty-seven Fridays: Losing our Daughter, Finding Our Way,” which chronicles Havi’s struggles and, just as vividly, her parents’ struggles to deal with a life full of promise but brutally finite in its duration. The book is as rare as the disease: beautifully written, almost impossible to read.

In those sad pages, Sack, 36, now a certified Compassionate Bereavement Care Provider living in Jamaica Plain in Boston, tells the heartbreaking tale of a tiny girl doomed to the fate A.E. Housman contemplated when he wrote of those who “will die in their glory and never be old.”

Havi’s glory was the 57 Shabbats that her parents set aside after they, as Sack recounts, “walked out of the hospital with Havi in our arms, having just been told that she will die.”

Their daughter bore a name conflated from the Hebrew names Hava and Chai, both of which mean life. That cruel irony is but one of the cruel fates the baby and her parents endured while experiencing the unendurable. (Her middle name comes from the Hebrew word meaning “heart.”)

In short, here is the story of Havi’s short life, which ended on January 20, 2021:

A new baby, transforming the couple’s life, rendering it “big, better, and almost sacred.” Troubling signs despite a doctor’s “perfect” assessment at Havi’s nine-month exam: she’s not making sounds, not crawling. At 14 months she’s fitted with orthotics to help her stand. Then the dreaded diagnosis and her husband Matt’s question: “How do we do this? How do we watch our daughter die?”

The answer is to celebrate each Shabbat as a birthday, rendering each Friday one of the birthdays she will not have. A Shabbirthday, they call it. It becomes their calling.

“Each week we invite friends and family for good food, wine, and of course, ice cream for dessert,” she writes. “We listen to music, dance, and reread poetry. When everyone goes home, Matt and I write a letter to Havi describing the evening we shared. Every Saturday morning, we post that letter on CaringBridge, sharing news of Havi and the transformative and painful life lessons we’re learning as we accompany her through life.”

Her readers learn painful life lessons as well. The fragility of human passage. The cruelty of fate. The way a golden life – Sack was captain of the soccer team at Dartmouth College, an All-America athlete; a post-graduate Lombard Fellow in Granada and Nicaragua with Soccer Without Borders; a pretty, happy, hopeful bride – can be transformed in a moment, a diagnosis becoming a death sentence.

I caught up with her the morning she was preparing for the fifth Havi Half – a half marathon the couple started while their daughter was still alive, an event where runners course through Sherborn, Mass., a place Havi loved. At Mile Seven, the runners engage in a “quiet mile,” running quietly, a several-minute moment of silence followed by reflections on those sounds of silence.

“There will be lots of living, happy, healthy children at this event,” she tells me. “We are living with one foot in the land of the dead and one in the land of the living, and not shortchanging either space.”

Being a parent – she has since had a daughter, Kaia, and a son, Ezra – gave Sack a strong sense of purpose. Losing a child gave her an even stronger sense of purpose.

“I am determined to dissolve this intimacy barrier that keeps people at a soft stance from things that are hard and painful,” she says in our conversation. “I needed a book to be a companion that wasn’t overridden with platitudes and didn’t give me comfort when I needed it. Having it be raw was important.”

So she wrote one. It is, to be sure, raw. It also is important.

Many of the letters the couple wrote to their daughter appear in the book. Here is an excerpt from one of them:

“You have a number of days remaining now. The pain of losing you feels different, scarier and stronger. We used to fear all the things we’d have to stop doing together, but now we are overcome by the fear of just not being with you. We’ve always dreaded this moment – the moment when you would tell us you were ready. But now we are afraid for having to live the rest of our lives without you. We wish we could go with you wherever you’re going.”

The National Association for Rare Disorders tells us that Tay-Sachs comes from a mutation in the hexosaminidase subunit alpha gene. More simply, it stops nerves from working properly. There is no cure. It almost always is fatal. Though it’s regarded as a Jewish disease, others – French Canadians, Old Order Amish – can contract it. But it has become rarer, largely because of pre-marriage screening to see if both parents have the gene that causes it.

Sack joined the Board of the Courageous Parents Network and is the Founder of E-Motion, Inc., a non-profit organization with a mission “to ensure community is a right for all grieving people.”

“We need to show up for each other,” she says. “We often let community off the hook.”

She begins her book with a quote from Emily Dickinson: “In this short Life that only lasts an hour/How much – how little – is within her power.” I’ll end this column with a quote from another onetime resident of Amherst, Mass.

Perhaps someday Sack might return to her alma mater and visit the library of Dartmouth’s infirmary, which is known as Dick’s House and is named for Richard Drew Hall, Dartmouth Class of 1927, who in his sophomore year died of cancer. In that library she might happen upon a copy of a volume called “Have Faith in Massachusetts,” written by Calvin Coolidge, who as president lost a son at age 16 to fatal blood poisoning from a blister. President Coolidge inscribed a note to Dick Hall’s father in the book that said: “To Edward K. Hall, in recollection of his son and my son who have the privilege by the grace of God to be boys throughout all eternity.”

Havi Lev Goldstein: who has the privilege by the grace of God to be a lovely and loving little girl throughout eternity. Θ

David M. Shribman, who won a Pulitzer Prize as Washington bureau chief of the Boston Globe, is executive editor emeritus of the Pittsburgh Post-Gazette and teaches at Carnegie Mellon University and McGill University.

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