When Jessica Fein’s daughter, Dalia, was diagnosed with a rare degenerative disease (MIRF syndrome) after a long diagnostic process, she was thrown into a world of medical uncertainty, impossible decisions, and the heartbreaking reality of watching Dalia’s abilities slowly fade.

In this episode, Jessica shares her adoption story with Dalia, the ambiguous grief associated with her diagnosis, how her views on the control she has over her life have changed, and the unexpected ways she found beauty in the hardest moments.

If you’ve ever fought to get answers, struggled to balance hope with heartbreak, or felt like you were carrying the weight of it all, this episode will feel deeply familiar.

Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!

Links:

Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!

Listen to Jessica’s podcast: I Don’t Know How You Do It.

Read Breath Taking: A Memoir of Family, Dreams, and Broken Genes by Jessica Fein.

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Access the transcript on the website here.

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