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You're listening to The Nocturness. Stories from the World of Medicine.

I'm Emily Silverman.

Today we continue with another story from our live show in New York City in

2023.

It's a show we co-produced with Danielle Ophrey and Ashley McMullen of the literary

magazine Bellevue Literary Review on the theme of taking care.

This story came to us from Mother of Four, writer and attorney, Anne Shroden.

Anne's third child, Jack, was born with a rare congenital muscular dystrophy and lived a love-filled

yet challenging life for 15 years. In Anne's story, she recounts a pivotal moment that

occurred late one night while she was caring for Jack.

Between eye contact, body language, and the power of music, Jack was able to convey to her

a powerful message, which helped her know what to do next to care for him best.

I'm so glad that Anne brought the story to us. The perspective of parent

caregivers isn't one that we've heard much on this show, and I learned a lot from speaking with

Anne about both the challenges and the rewards of that experience. After Anne's story, she and I

speak about how she and her family managed to care for Jack at home all those years, despite him needing a ventilator and other complicated care.

The multitude of emotions that could be conveyed between her and Jack without him uttering a single word.

And her amazing work collecting stories from patients and clinicians,

...