In her new memoir, Emily Rapp describes how she and her husband discovered that their 9-month-old son was about to die in a couple of years, and how she continued to nurse her son till his last.
Writer Emily Rapp couldn't have been happier with her small family - her husband and 9-month-old son Ronan. However, in an instant, her perfect life was nothing close to perfect. Worried about their son's underdevelopment, Rapp and her husband went to see an eye doctor to rule out vision problems. However, they were surprised when the doctor told them that Ronan had "cherry-red spots on the backs of his retinas." The doctor diagnosed Ronan with Tay-Sachs disease, a genetic and degenerative condition that has absolutely no cure and is always fatal. Rapp was told that her son had only a couple more years to live.
Rapp writes in her new memoir "The Still Point of the Turning World" that she and her husband didn't look for a second opinion and it was by far the worst thing that could happen to them.
Tay-Sachs is a disease where children lack an enzyme that is responsible for the breakup of certain chemicals in the brain. Since these chemicals don't break, they gather up and soon the brain loses it capacity to function properly.
Ronan died this January. The book acts as a guide on how parents could survive the pain of nursing a child who has no future. However, the author ended the book while Ronan was still alive.
"When I finished [the book] I felt that [the story] was done," Rapp explains, "and what I had wanted to say about him was done. ... [T]he rest of the time was just something I had sort of anticipated but didn't necessarily need to be in the narrative."
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