My guest Myra Sack shares the heart break and the beauty of what it was like to be with her daughter Havi in her too short life. She and her husband Matt ended up having only 13 months between Havi’s diagnosis of Tay-Sachs Disease at just 15 months old and her death at home with them. In that time, the created a sacred weekly ritual that combined the Jewish tradition of Shabbat with birthday celebrations that Havi would most likely not be alive for. The result was 57 Shabbirthdays and the recognition that we can all hold joy and pain in these liminal spaces. What a sacred and beautiful conversation we shared.

A Mother’s Letter On The Passing Of A Young Daughter by Myra Sack

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(06:06) - Approach Behavior vs. Avoidant Behavior: Why approaching grief as a community should be encouraged - “We see grieving people somehow as scary or you know, this negative stimulus as opposed to seeing grieving people as beautiful and wise and light.”

(09:18) - Myra’s story: How she met her Husband Matt, became the

mother of Havi and a fatal error that changed their lives forever. 

(13:36) - Shabbirthday: Moving from shock and anger to active

living and celebrating the time Havi had left - “It was in that moment that I

realized that she was here with me in this physical world for only a brief

moment more, and so I was going to summon whatever courage.” 

(26:19) - Finding solace as a community: How people became present

in the Shabbirthdays and accompanied Myra’s family.

(35:53) - How Myra continued a relationship with Havi after her death.

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