Their daughter’s death from Tay-Sachs at age 2 transformed this family’s view of grief

NEW YORK — Myra Sack wore lavender-colored socks on the morning she spoke to The Times of Israel for this article. It was a subtle, tangible connection to her daughter Havi Lev Goldstein, who died when she was two years, four months, and 16 days old from Tay-Sachs, a fatal neurodegenerative disease.

“One day we put a long-sleeved lavender top on Havi and she just relaxed into herself in a way that she hadn’t in a while. From then on, lavender became Havi’s color,” Sack said via Zoom from her home outside of Boston.

After they were informed on December 17, 2019, that Havi had a year to live, Sack and her physician husband, Matt Goldstein, decided they would celebrate every ounce of their curly-headed, smiley daughter. Sack chronicles the family’s experience in her newly released memoir, “Fifty-Seven Fridays: Losing Our Daughter, Finding Our Way.”

Sack and Goldstein decided that as they faced the prospect of a world without their brown-eyed, long-lashed daughter, they would surround Havi with love and wonder. Friday night Shabbat dinners became “Shabbirthdays,” each one representing a future birthday Havi would never have. They also decided they would write her letters, which became a way to communicate with each other as well as with their dying daughter.

“For the first time in both of our lives, we couldn’t fix it and so we had two choices — live with her and love her, and show fear, devastation, and anguish, or hide and miss the opportunity to experience our daughter. It was not a conscious choice, but we chose what might have seemed the scarier choice because it is in the end so much fuller,” Sack said.

Behind Sack, photographs of Havi are hung on the wall. In one, she was outside with sun-splashed cheeks, head tipped back in delight. In another, Goldstein kissed her head as she snuggled into a baby carrier. One had her lying beside her little sister, Kaia, who is now three-and-a-half, while in another, Sack held Havi’s photo in one hand while Kaia and Ezra, who is now one-and-a-half, squirmed next to Goldstein.

Since Havi’s death in 2020, Sack earned her certification in compassionate bereavement care and has joined the board of the Courageous Parents Network. She also founded the non-profit E-Motion, which blends bereavement science, spirituality and sports. Goldstein is now CEO of JScreen, a national non-profit headquartered at Emory University focusing on high-quality, preventative genetic care and testing.

The memoir deals with Havi’s life and death, and how Sack and Goldstein navigated them, but also portrays how the family continues moving forward while keeping Havi close.

“Transformation and continued change is messy and complicated and it hurts,” said Sack. “And it’s also really joyful and inspiring. I think we so often feel we have to choose between confusion and clarity, excruciating pain and elation. But that’s not true. They can exist together.”

The following interview has been edited for brevity and clarity.

The Times of Israel: We’re speaking on a Wednesday morning, which I learned from your memoir is Havi Day.

Myra Sack: Havi days were born out of this notion that if she were still here we would spend far more time with her than carving out a single day a week. In the absence of that, we wanted to preserve some part of every Wednesday because it’s the day of the week she died.

The first year after she died we had Havi days that were fully holy — neither one of us worked. Now the day has become more integrated into the business and the noise of every day.

Our Wednesdays always start with a 9:04 a.m. text message from our siblings along with pictures of Havi. That is the time of the day that she died. It’s just this exquisite way the people who love her show us that she’s in their minds and in their hearts.

Grief touches each of us, yet so many people are afraid to talk about death and grief. By contrast, there is a fair amount of fearlessness when it comes to talking about death itself.

As a society, we live in fear of turning toward pain, of exposing our own vulnerabilities. As a result, we often live really suppressed and distanced lives. That has a real cost. So instead, Matt and I started to insist, because it was a matter of survival, that instead of operating in this “fear of,” we would turn toward the hardest thing, the most painful thing. That ultimately revealed a beauty and a fullness that can exist when we embrace the full spectrum of our emotions and experiences.

Grief affects each of us so differently. How did you and Matt navigate this?

One of the most painful experiences of losing a child is watching the person you love — in my case, Matt, Havi’s dad — experience knee-buckling pain and, in some moments, lose his energy, his sense of conviction and self-trust, and vice-versa.

As a couple, being able to bear witness to that and trust that we are capable of holding that immense pain and moving with it — instead of feeling like one of us has to fix the other or minimize the other’s pain because we’re afraid of it — has been a really important aspect of our partnership.

After Havi was diagnosed, you describe living in a liminal space. Can you talk more about this?

Moving with grief, it’s a constant presence woven into every part of us and is how we now experience the world. I think that’s just what people don’t understand about grief — it shows up in micro-moments that get totally missed by the outside world.

We as grieving people walk around trying to hold an identity of being someone who can operate fully in the land of the living, and we recognize and appreciate its beauty and how remarkable it is to be a part of the land of the living. We also hold this identity that is somewhere else — trying to keep close to someone who is cellular but not seen. Holding both of those identities is exhausting.

The memoir includes the letters from you and Matt to Havi. They are honest and direct; you wrote to her about what was happening to her and how you were feeling about it.

I felt like we owed her that. We had this desire to find a portal to her and between us because we couldn’t communicate with her in the way I always imagined I would with a child. It was our way of parenting our dying daughter and we didn’t have time for small talk. Time had collapsed on itself. All we had was our most honest, raw, real feelings, and I felt if I couldn’t give her that as her mom, then I would be failing her.

There is a scene in the book where tell your parents that Havi will die in a few days. As you drive away, you catch a glimpse of them collapsing into each other. Can you talk about the helplessness your parents and Matt’s parents felt in not being able to make it better for you both?

When it comes to Kaia, I have such a hard time watching her struggle, be afraid, or experience sadness. I’m constantly reminding myself that it’s the greatest gift to give her the time and space to be sad, to trust that it’s an emotion she has the capacity to hold.

And as it relates to my parents, they were so brave and trusting. They knew I could fall apart and still find my way. That lack of judgment is so undervalued in the parent-child relationship. Judgment can get in the way of being able to walk alongside someone who isn’t able to exist in the way that they wish they could because they are so overcome with anguish.

Your memoir also highlights not only how you and Matt cared for Havi while she was dying but also how you cared for her in the immediate hours and days after her death. Why was this important for you to share?

So often we aren’t told what we are allowed to do when someone is dying at home.

The pediatric palliative care movement is an essential component to Havi’s story. It’s important to partner with families and for families to learn to follow their children’s leads and to also trust themselves.

Secondly, we’re not told about what to do when someone dies at home. We just aren’t told what’s allowed, and so we make a lot of assumptions. My sister spoke with a death doula, kind of behind the scenes, for guidance. We were able to care for Havi the way we wanted to and I have no regrets.

Kaia, who is now three-and-a-half, had time with Havi. Ezra, who is now one-and-a-half, was born after she died. How do you help them understand this loss as they get older?

Right now Kaia doesn’t appreciate death as permanent. She often thinks of Havi as living in a different house, or she’ll tuck her into her heart so she can be cozy. Her next developmental phase will be understanding that death is permanent. Ezra looks at pictures of her and says, “Baby sister.” Both Kaia and Ezra will have to learn to understand they have a sister they will never grow up with, and that’s really, really hard. So what we really try to do is not project our adult interpretations of death onto them. We follow their lead and answer their questions as they come. We try not to answer the questions we think they’re asking.

Havi sounds like she was a true New Englander, especially when it came to weather — the drizzlier the better, the bigger the waves the better.

It quickly became clear that the natural elements really enhanced Havi’s well-being. She was drawn to the wind and the snow. She’d stick her tongue out and try to catch flakes on it. She loved being right at the edge of a ridge that in my mind was quite terrifying and in hers maybe exhilarating.

She seemed to turn towards sunsets. Her eyes would lighten when she noticed the purple and pink streaks in the sky. In that way she taught us, taught me, to be in conversation with the natural world.