Jody Gelb on Navigating Life and Loss with a Medically Fragile Child

What does it mean to parent a child whose life is both a miracle and a medical emergency? 

In this tender and unflinching conversation, Broadway actor and author Jody Gelb shares the story of her daughter Lueza—her first child, born with disabilities resulting from a catastrophic birth injury—whose life was defined by both relentless caregiving and radiant joy.

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Through the lens of her micro-memoir, SHE MAY BE LYING DOWN BUT SHE MAY BE VERY HAPPY, Jody speaks to the reality of raising a medically fragile child with cerebral palsy, where hope and anticipatory grief coexisted, and where love lived in the details, even amidst exhaustion and heartbreak. She takes us inside her NICU experience, evolution, reflects on self-judgment, ritual, and resilience, and explores what it means to live close to both life and death for years at a time.

This is an episode for caregivers, grievers, artists, and anyone who knows what it’s like to live inside a contradiction, and still find meaning there.

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Takeaways:

• Micro memoirs offer a powerful, distilled way to tell grief stories with clarity and emotional punch.
• Parenting a medically complex child requires living in constant contradiction: hope and heartbreak, joy and sorrow.
• The NICU experience leaves a lasting emotional imprint and is often under-discussed.
• Anticipatory grief changes how we relate to time, memory, and presence.
• Grief rituals and proximity to death can empower us to live more intentionally.
• Siblings of medically fragile children have unique emotional experiences that deserve recognition.
• Even in the most difficult circumstances, love and laughter remain possible, and necessary.

Connect with Jody Gelb:

• jodygelb.com
• Buy the book
• About Lueza

Connect with Nina Rodriguez:

• @griefandlight
• griefandlight.com
• 1:1 Grief Support

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Disclaimer: griefandlight.com/safetyanddisclaimers