When Jessica Fein’s daughter Dalia was five years old, she was diagnosed with a rare disease called MERRF syndrome.

On a recent episode of The Work-Life Equation podcast, Jessica joined Priya and Paul to discuss her new book Breath Taking, a memoir that described her family’s journey from the time of Dalia’s diagnosis to the devastating day she passed away.

“The story is really about building, loving, and losing family,” Jessica says. 

“I wanted to bear witness to what was happening,” she continues. “I wanted to share what was both a unique story by definition, but also a really universal one in terms of caregiving and parental devotion and juggling – all the things that so many of us are doing on a day-to-day basis. Dalia was my inspiration, and I hope that her beauty and light and love shines through on every page.”

As a mother of a child with a rare disease, Jessica wrestled with a unique version of “working-mom guilt”.

One of Dalia’s nurses magnified these feelings of guilt when she sent Jessica an email chastising her for working instead of staying home with her daughter.

The nurse addressed the letter solely to Jessica – even though her husband was the better hands-on caregiver and she was the primary breadwinner in their house.

Due to a nursing shortage and her daughter’s need for specialized care, Jessica and her husband ultimately decided to continue to employ the nurse, however, it was a moment that she never forgot.

“It struck me on so many levels, but particularly the fact that it was me. It was the mom who was being told, you should not [work.]”

Jessica continues to share that one of her biggest challenges was learning how to live with her fears, anger, and anxiety. By acknowledging that these feelings were real and justified, she was able to maintain control of them instead of having those emotions dominate and control her life.

“I liked to think about it that way, that, you know, you integrate these different feelings into your day to day, and that's how you can move forward, because otherwise they can just consume you,” Jessica says.

To hear more of Jessica’s wisdom, listen to her full conversation with Priya and Paul, and be sure to check out her memoir Breath Taking.