What if the hild you raised with boundless joy was also the one who taught you how to live through heartbreak, loss, and beauty—all at once?

In our latest episode of the Child Life On Call podcast, we sit down with Jessica Fein, an author, mother, and fierce advocate whose daughter, Dahlia, lived with MERRF syndrome—a rare mitochondrial disease. Jessica’s story is one of resilience, advocacy, and deep maternal love. It’s about finding meaning and moments of joy amid unimaginable circumstances.

🎧 Listen to the full episode here.

The Early Days: The Diagnostic Odyssey Begins

Jessica and her husband adopted Dahlia from Guatemala at just six months old. Like many parents, they noticed subtle signs early on—delayed milestones, a wobbly gait, garbled speech—but were told not to worry. Multiple early intervention visits and inconclusive tests later, they finally discovered Dahlia had MERRF syndrome.

🧬 A rare and progressive mitochondrial disease, MERRF would come to define not just Dahlia’s health journey, but her family’s path as well.

Despite the diagnosis at age five, Dahlia’s symptoms escalated dramatically at nine. She became ventilator dependent, could no longer speak or eat, and eventually lost her ability to move altogether. The family’s world became one of medical equipment, hospital stays, and around-the-clock caregiving.

But it also became a world of fierce love and unforgettable joy.

Grief and Love Can Coexist: The Power of Connection

Jessica doesn’t shy away from the emotional truth: grief doesn’t wait for death. As she explained, many parents of medically complex kids experience “ambiguous grief”—a mourning of what could have been.

Yet, alongside that grief was something luminous: Dahlia.

✨ “There are so many rare things about Dahlia. Her disease was the least rare of them.”

Dahlia was an old soul with a feisty spirit and mischievous charm. She squirted her siblings with saline bullets and radiated kindness to everyone she met. She couldn’t speak, but her eyes and her energy said everything.

Coping, Creating, and Continuing: How Jessica Found Her Voice

Jessica found solace in writing. What began as notes written by her daughter’s hospital bedside became her memoir, Breathtaking. Written before Dahlia passed away, it focuses not just on death, but on living fully despite suffering.

✍️ “This is my story,” she says. “Dahlia is the main character, but it’s my transformation too.”

From embracing creativity as a healing tool to navigating ambiguous and anticipatory grief, Jessica’s insights are deeply relatable for anyone who has faced uncertainty as a parent.

Lessons From the Hospital: How to Show Up for Families

Jessica offers some of the most practical, heartfelt advice for supporting families during extended hospital stays:

💛 Bring nourishing meals—not just treats
💛 Cozy socks, real bedding, and distractions like books and art supplies go a long way
💛 Offer help without making them ask—tidy up their corner, care for siblings, or take initiative
💛 Don’t just say “Let me know what I can do”—create a shared doc where people can check off real needs

“Presence is a gift,” Jessica says. “You don’t have to say the perfect thing. Just show up.”

Continuing Bonds and Sharing the Story

Even after Dahlia passed away in 2022, her impact hasn’t faded. Jessica continues to share her story through writing, public speaking, and her own podcast, I Don’t Know How You Do It. She advocates for grief literacy and for making space to talk about those we’ve lost—and those we’re still grieving, even while they’re alive.

🌟 “I don’t want to get over my people. I want to integrate them into how I move forward.”

How You Can Connect With Jessica Fein

📘 Breathtaking is available on Amazon and at independent bookstores
🌐 Visit www.jessicafeinstories.com
🎧 Listen to her podcast: I Don’t Know How You Do It
📱 Follow her on Instagram and Facebook
🎤 Watch her TEDx Talk and read her articles in Psychology Today

💬 Whether you’re a medical parent, a friend of one, or someone who believes in the healing power of stories—this episode will stay with you.

Because when we speak our truth, we make space for others to do the same. And when we remember our loved ones, we keep them alive in all the most important ways.

💛 Listen, share, and honor the breathtaking beauty of Dahlia’s life.