In this deeply moving episode we talked with Myra Sack about the love, loss, and legacy of her daughter, Havi. Diagnosed with Tay-Sachs disease at just 15 months old, Havi's life was brief but profoundly impactful. Myra shares how she and her family navigated the unbearable reality of their daughter's illness and death, including transforming their Shabbat ritual into "Shabbirthdays" held every Friday to celebrate Havi's life.
Myra reflects on the arduous medical rollercoaster that led to Havi's Tay-Sachs diagnosis, the challenges of navigating a world that struggles to support the bereaved, and how she and her family find solace in sharing Havi's legacy with others. She also discusses her memoir, Fifty-Seven Fridays, and how she started E-Motion, Inc. an organization that harnesses movement, community, and ritual to support those who are grieving.
We discuss:
The ongoing presence of grief, particularly during milestone moments and everyday life.
How Myra and her husband Matt created the Shabbirthday ritual to honor Havi each week.
How Havi continues to teach others even after her death.
The impact of isolation for grieving families and the struggle of navigating social norms post-diagnosis.
Finding ways to stay connected to Havi through rituals, storytelling, and shared memories.
Myra's journey into grief education and the founding of E-Motion, which supports people who are grieving through movement and community.
The need for more grief-informed communities.
Resources & Links:
Fifty-Seven Fridays by Myra Sack
What Happened to You? By Bruce D. Perry & Oprah Winfrey
Connect With Us: Have thoughts on this episode? We'd love to hear from you! Email us at griefoutloud@dougy.org or visit our website for more resources and past episodes.