Dear Beauty,
The date, January 20th, approaches slowly, marking one year since you took your final breath while resting on my chest in our bed. The evening before, we celebrated with a dance party. Your loving circle—our family, friends, and cherished nanny, Tia—gathered in our warm kitchen. Music played, and we passed you around, each wanting to share one last dance. We didn't stick just to slow songs; you moved to the beat of “Havana” and “Danza Kuduro” too. Despite not eating or drinking anything for six days, you found the strength to sway and dance with us all. That night, on January 19th, we shared laughter and tears, songs and dances. We embraced each other, letting our tears and emotions flow freely without wiping them away. After dinner, as was our custom, we had ice cream, and we gently touched a bit of mint chocolate chip to your lips, hoping you might sense its sweetness.
Country music and reggae, blueberry pancake and ice cream, deep, heartfelt sobs and bursts of genuine laughter, and discussions about our relationships and the purpose of our existence.
This is how we experience grief in our home.
Our beloved first-born daughter, Havi Lev Goldstein, passed away on January 20th, 2021, at 9:04 a.m. She left us peacefully, in our arms, in our bed. Have suffered from Tay-Sachs, a devastating disease that gradually strips away both mental and physical abilities over 12-18 months. She was just two years, four months, and sixteen days old.
My husband, Matt Goldstein, and I had undergone genetic testing before conceiving to check for Tay-Sachs disease. Being of Ashkenazi Jewish descent, we knew of the higher risk of carrying a mutation in the gene associated with Tay-Sachs. We took the testing seriously. My results showed I was a carrier, but Matt's results incorrectly indicated he was not. Since Tay-Sachs is an autosomal recessive disease, both parents need to be carriers for the child to be at risk. We were reassured and soon expecting our first child.
Tragically, Matt's test was incorrect; he was also a carrier. At 15 months old, Havi was diagnosed with this fatal, progressive neurodegenerative disease. Our world changed in an instant; we became not just new parents but new parents to a dying child.
From the day of Havi’s diagnosis on December 17th, 2019, until her passing on January 20th, 2021, we followed her lead. She never spoke a word or took a step but communicated profoundly through her smiles, tears, bright eyes, and head movements. She loved deeply and had a clear voice for those who listened closely.
Havi showed us that life can encompass unimaginable beauty and pain. Living on the edge of such profound experiences enriches our hearts, perspectives, and sense of community.
Every Friday night, we celebrated Havi's life with our loved ones through a tradition called “Shabbirthday,” a blend of Shabbat and Birthday. Havi's favorite food, challah—a braided Jewish bread eaten during Shabbat—was the only food she had ever wanted. Knowing her birthdays would be limited, we wanted more than just two. So, we celebrated 57 Shabbirthdays with balloons, cakes, beach walks, fancy dinners, challah, and beautiful songs and prayers. We didn't feign happiness at these gatherings; we were heartbroken. These celebrations weren't to distract from the pain but to find beauty and joy amidst it. We needed the love and support of our closest people around us, treating every moment as sacred, not scary, as holy, not superficial.
This is how we experience grief in our home.