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Episode 256: Dalia's Mom
Manage episode 433130162 series 3561913
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"I don't know how you do it."
I have heard this phrase on and off in my life, but that was nothing compared to how often I have heard those words since Andy died. I know people mean well when they say, "I don't know how you do it," but I never really know how to respond. I don't feel any stronger or more resilient than anyone else. Quite the opposite is the case actually. I often feel weak and alone.
Today's guest, Jessica, heard "I don't know how you do it" for many years as well. It started shortly after her 5-year-old daughter, Dalia, was diagnosed with MERRF syndrome, a degenerative mitochondrial disease. Over the years as other parents watched their children gain milestones, Jessica and her family watched Dalia lose hers - first, her ability to walk and speak and then the ability to eat on her own. Eventually, Dalia even lost her sweet smile.
At the time of Dalia's death, her bedroom looked more like an ICU room than the bedroom of a teenage girl, but until Dalia died, Jessica didn't notice any of that. She just focused on being a loving mom to her sweet daughter. 'I don't know how you do it?' Really? It was just normal life for her. There was nothing heroic or extraordinary happening. Jessica just did what she had to do, living every day with her family hoping to give them all the best life possible.
Jessica at some point decided to write a book about her experiences raising and losing Dalia while also suffering through the deaths of both of her parents and sisters. The result of this effort was 'Breath Taking: A Memoir of Family, Dreams, and Broken Genes' available here on Amazon. She also began to think about the phrase 'I don't know how you do it' more deeply. How does anyone 'do it' actually? Jessica decided to start her podcast which she aptly named, 'I Don't Know How You Do It' to explore the question more deeply. Each week, she interviews someone whose life seems unimaginable from the outside. Through the podcast, Jessica hopes to show listeners that there isn't a magic answer. We can all do it, no matter what our circumstances. Each day, we all get out of bed and do it and so can you.
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