When Rabbi Elie and Chaya Rochel Estrin were preparing to welcome their sixth child into the world, the news that their baby had developed multiple cardiac defects in utero felt like a bombshell. The doctors’ prognosis was grim. The medical conditions were inoperable, and they weren’t sure if the baby would be born alive. At a loss for what to do, Rabbi Estrin set off to visit the Ohel in Queens, N.Y.—the resting place of the Rebbe, Rabbi Menachem Mendel Schneerson, of righteous memory—to ask for a blessing.
Nissi Estrin was born on a cold winter afternoon on Feb. 8, 2016. The doctors were sure he wouldn’t make it. But Nissi proved everyone wrong.
The newborn spent the first few days of his life in the neonatal intensive-care unit at the University of Washington Medical Center. “The doctors gently told us that our baby could die at any minute,” recalls Chaya Rochel Estrin. “There was nothing they could do for him. They suggested we contact a hospice service and start saying our final goodbyes.”
As Nissi fought for his life, the Estrins searched for a medical professional who would take on their case, begging anyone that would listen to “give Nissi a chance.” A few days after their son was born, they received the news that the Seattle Children’s Hospital agreed to take him under their care.
When he was six days old, Nissi underwent open-heart surgery. A few weeks later, he suffered a cardiac arrest. To date, Nissi has survived multiple open-heart surgeries.
Almost six years later, with a zest for life and broad smile, Nissi thrives, uplifting all those with whom he comes into contact. “A friend recently told me that Nissi is their ‘personal life mentor,’ ” says Chaya Rochel Estrin. “Every time I’m going through something rough, I close my eyes and imagine Nissi’s warm, beautiful smile, and that’s all I need to feel better.”
That was part of the encouragement that led the Estrins to draft their experiences into an online document to share their story with those who could use support and guidance. “People were always telling us: ‘You really should write a book,’ so we did. We worked on it together until the end of the 2020 lockdown. We aimed to write the book as an inspiring story of hope.”
A Family’s Journey of Perseverance
Miracles, Medicine and Mindsets chronicles their personal journey of raising Nissi, a delightful little boy born with a single ventricle, pulmonary atresia and (PVC) premature ventricular contractions.
The Estrins describe both the struggles and joys that accompany raising a child born with physical challenges. Poignant and uplifting, the book is replete with anecdotes, as well as perspectives gleaned from a lifetime of Chassidic study that “carried them through.” Especially instructive for them were lessons of bitachon (absolute trust in G‑d’s goodness) emphasized in the Rebbe’s teachings.
The book includes practical guidance on crisis management, patient advocacy and self-care for parents who are struggling, as well as advice for friends and loved ones who want to be supportive but don’t know how.
Raising their son has been a journey, says Chaya Rochel Estrin. “We’re thankful to G‑d to have ‘come out at the other end,’ but we remember the fear, grief and uncertainty well. Sharing our story and experience in Of Miracles, Medicine and Mindsets is our ‘small’ contribution to helping people navigate the waters of raising children with disabilities. No one should be forced to go this alone.”
When asked about what mindsets helped her stay calm during their many challenges, Chaya Rochel Estrin says: “Taking one day at a time definitely helped me stay present, focusing on the here and now. Realizing that Hashem has a plan and that He loves us was definitely a game-changer. Knowing and meditating on the belief that He’s got our backs and He’s taking care of us definitely helped us through trying times. That sort of acceptance helped me better handle the situation. Simply recognizing that Hashem is orchestrating it all and that He knows what He’s doing was comforting to me.”
Estrin says she feels lucky to have “gotten past” those moments of intense grief and fear of the unknown, but keeping in mind G‑d’s love for her and her family, helped to “soothe the wound.”
“Hashem does really tough things to us,” she says. “We don’t understand it, and I don’t think there’s really any explanation for it. Though G‑d has a plan, we can still cry and beg that we see revealed goodness in our lives.”
“Of Miracles, Medicine and Mindsets” can be purchased here or via the Kindle app on Amazon.com.
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