Grief has a way of breaking us open—but in that breaking, we often find a depth of love, strength, and connection we never knew was possible. Jessica Fein knows this truth intimately. As the mother of Dalia, a vibrant and mischievous girl who faced a rare degenerative disease, Jessica has walked a journey of profound love and unimaginable loss.
In a recent episode of Grief 2 Growth, Jessica shared the lessons Dalia taught her, the reality of ambiguous grief, and how surrendering to the present moment became her greatest act of love.
“We all think we know what we can handle—until life hands us something more. And then, somehow, we do it.” – Jessica Fein
This is the story of a mother’s unwavering love, the unexpected joys found in the hardest of times, and the wisdom that emerges when we open our hearts to grief.
Dalia’s Story: A Life Filled With Love
Jessica and her husband adopted Dalia from Guatemala when she was just six months old. Even as a baby, Dalia had a presence that felt wise beyond her years.
“She was an old soul,” Jessica recalls. “She had this way of looking at you, like she knew something you didn’t.”
For years, Dalia was an active, joyful child. But at age five, she was diagnosed with MERRF syndrome, a rare mitochondrial disease. The diagnosis changed everything.
At first, the signs were subtle—hearing loss, difficulty walking. But as time passed, the disease took more. By age nine, after a devastating hospital stay, Dalia lost the ability to walk, eat, and even breathe without assistance.
Yet, through it all, she remained the light in the room.
“She showed us how to live. She was pure love and mischief all rolled into one,” Jessica says.
Living With Ambiguous Grief
One of the most profound challenges Jessica faced was ambiguous grief—grieving what was lost, even as her daughter was still physically present.
“When your child has a degenerative disease, you're constantly losing them in small ways before you actually lose them,” Jessica explains.
Dalia’s voice faded. Her independence dwindled. But Jessica and her family focused on what remained—her radiant spirit, her laughter, and the moments of beauty they could create together.
Jessica calls it “finding corners of beauty”—seeking joy even in the most difficult circumstances.
“We couldn’t change the trajectory of the disease, but we could make today as beautiful as possible,” she says.
The Strength We Don’t Know We Have
Jessica never expected to be the mother of a child with a life-limiting illness. In fact, when she and her husband filled out their adoption paperwork, they specifically opted out of adopting a child with known medical conditions.
“Had we known, we wouldn’t have said yes,” she admits. “But thank God we didn’t know. Because Dalia was always meant to be ours.”
It’s a testament to the resilience we all have inside us—whether we realize it or not.
“We are capable of so much more than we think we are.”
Finding Meaning After Loss
When Dalia passed in 2022, Jessica was no stranger to grief. She had already lost both of her parents and both of her sisters. But nothing could prepare her for losing her daughter.
And yet—she keeps going.
Jessica channels her grief into storytelling, sharing Dalia’s legacy through her memoir Breathtaking, her podcast I Don’t Know How You Do It, and her advocacy for families navigating rare diseases.
“People say, ‘I don’t know how you do it,’ but none of us know—until we have to,” Jessica says. “And when we do, we find a strength we didn’t know we had.”
What Jessica Wants You to Know About Grief
For anyone facing loss, Jessica offers this wisdom:
💜 Find your people. Surround yourself with those who understand—even if they’re not the people you expected.
💜 You are more resilient than you think. You don’t have to know how you’ll survive—you just have to take the next step.
💜 Grief and joy can coexist. It’s okay to laugh. It’s okay to feel happiness again.
And above all—love never dies.
“I still feel Dalia’s presence,” Jessica says. “She’s not gone. She’s just in a different form.”
Continue the Conversation
If Jessica’s story resonated with you, keep exploring these resources:
📖 Read Jessica’s Memoir: Breathtaking on Amazon
🎙️ Listen to Jessica’s Podcast: I Don’t Know How You Do It
🌍 Join a Supportive Community: Grief2Growth.com/community
Grief doesn’t have to be the end of the story. It can be the beginning of a new kind of love. 💜
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