Losing a Child: Always Andy's Mom

Episode 354: Story Keepers - Jacob's Dad


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We are all born into a house of stories.

That is something Dan, Jacob's dad, believes deeply, and it shapes everything about how he has carried his grief. Dan is a professional storyteller by trade, and when his son Jacob was born fragile and uncertain in the NICU, not expected to survive, Dan did the only thing he knew how to do. He sat by his side and talked. He told stories, sang songs, even recited Chaucer in Middle English, because he believed his voice could be a beacon, something Jacob's soul could navigate by to find his way into the world. He called the experience talking him in.

Jacob lived. He was eventually diagnosed with Prader-Willi syndrome, a condition Dan explains in simple terms as leaving someone always, organically hungry, with locks needed on the fridge not because Jacob was sneaky, but because his body simply could not register being full. He grew up big, sometimes teased, slow to make friends, but open to the world in a way Dan deeply admired. His great-grandmother told him once that he was born for a purpose, and Jacob carried that with him quietly for the rest of his life. Years later, working as a beloved school crossing guard in Toronto, he helped save a toddler who had run into oncoming traffic, and told his dad afterward, through tears, maybe that is why I chose to live.

Jacob died at 26, eight days after a car accident, with enough time for his mother and brother to make it to his bedside. Dan calls those final eight days talking him out. He believes there is a kind of circle in that. Talked in at the beginning of his life. Talked out at the end of it.

In the two years that followed, Dan did something he had spent years encouraging other people to do, first as a storyteller in residence at Baycrest Health Sciences, and later in palliative care settings. He became Jacob's story keeper. He gathered every scrap of Jacob he could find, poems, apology letters, nicknamed lists of fishing rods and fedoras, all of Jacob's own words and ways, and wove them into a book written entirely in Jacob's imagined voice. It is called I Am Full: Stories for Jacob, and a major publisher offered to print it if Dan would write about his own experience instead. He said no. The book was never meant to be about him. It was meant to be about Jacob.

Dan's belief is simple and profound. We are each other's story keepers. Not just parents and children, but everyone who has ever loved someone and chosen to remember them out loud. He shares the story of an Italian woman in a palliative care unit, encouraged to collect her dying mother's proverbs in her final days, who became her mother's story keeper in the process. He shares the old expression that a person is not truly dead until they are forgotten.

This podcast exists, in many ways, to do exactly what Dan describes. We tell stories. We collect stories. We keep them, together, so that no child is ever just a name on a headstone, but a whole, full, remembered life.

If this conversation moves you, Dan's book I Am Full: Stories for Jacob is available through Signature Editions, a small publisher out of Winnipeg and can be purchased on Amazon.

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Losing a Child: Always Andy's MomBy Marcy Larson, MD

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