Michelle Moon has had some wrenching conversations with her daughter, Julianna Snow, who, at just 5 years old, is dying of an incurable disease. She's endured painful procedures and numerous hospitalizations during her battle with Charcot-Marie-Tooth, a neurodegenerative illness that has robbed her of the ability to walk, eat normally, or even breathe without the help of a machine, leading to the first such conversation with her mom when she was just 4. As recounted by Moon on her blog in July of this year:
- "Julianna, if you get sick again, do you want to go to the hospital again or stay home?"
- "Not the hospital."
- "Even if that means that you will go to heaven if you stay home?"
- "Yes."
Many such conversations have followed, with Moon and her husband making sure Julianna understands what it means to die, and understands that's what will happen if she does not go back to the hospital. Moon has written about those conversations—and her and her husband's decision to honor their daughter's wishes, if they remain the same, by not sending her back to the hospital if her prognosis is not good—on both her blog and The Mighty, and now CNN explores the family's sad story in a 2-part series. If Julianna gets sick again, a hospital visit might just prolong her suffering rather than save her life, Moon tells CNN, and her and her husband's desire to put their daughter through that in hopes of getting a bit more time with her is "selfish," she says. But the decision is controversial, with some arguing a 5-year-old is too young to understand the stakes. "Our nurse cried with us and told us she believed children with terminal illnesses do understand death," Moon wrote in a recent post on The Mighty explaining the difficult decision. "They may not understand everything about it, but who really does?" (More terminal illness stories.)
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