It's her gaze that draws you in. A look that's direct and serious, coming from a five year-old pair of brown eyes that peer behind strange breathing apparatus. Julianna Snow has Charcot-Marie-Tooth disease, a rare and incurable neurological disorder whose effects — and treatment — have over the past few years become a "slow motion horror story" for her and her family. So now, Julianna Snow says she's ready to die. Or as she puts it, to go to heaven.
CNN this week has been covering the story of Julianna and her family and their decision to go public with their quest to her give a compassionate end to her short life. It's a story not without controversy, both because there's a young child at the center of it and because of the family's choice to frame process as case of picking "heaven over the hospital."
Julianna's family is painfully aware of what they have been through and what potentially could lie ahead. Her mother, Michelle Moon, is a neurologist. As CNN reports, the child's hospital visits have been progressively more brutal. "Over and over, she told her parents how much she hated the hospital, especially 'NT,' or naso-tracheal suctioning…. Stronger children usually scream and have to be restrained when someone tries to put the tube down their nose. But Julianna was so weak all she could do was cry."
That's why, several months ago, her parents realized it was time to change the conversation. On her blog, Moon writes of how she asked her daughter, then four, what she wanted to do the next time she becomes seriously ill — a situation that could leave her on a respirator and with "very little quality of life." Her mother asked her, "Julianna, if you get sick again, do you want to go to the hospital again or stay home? Julianna chose home. Moon says she asked her, "Even if that means that you will go to heaven if you stay home? And you know that mommy and daddy won't come with you right away? You'll go by yourself first." Julianna chose home.
Julianna's condition has been holding steady for a while now — it's been a year since her last serious health episode — but her condition remains fragile and life-threatening. There is no likely miraculous medical breakthrough to provide a happy ending here. The family — Julianna, her parents, and her six year-old brother Alex — has been going through counseling to prepare for what comes next for them. Julianna says, "Heaven is good. But I don't like dying." And Moon tells her, "I know. That's the hard part. We don't have to be afraid of dying because we believe we go to heaven. But it's sad because I will miss you so much." She tells her daughter that later, when she joins her in heaven, "I will run to you. And I think you'll run to me, too."
It's hard to imagine anything more gut-wrenching than having to prepare for the loss of a child, and having to prepare that child for her own death. Death is not something we like to face head on in our culture, even as adults. Last year, when Brittany Maynard shared her choice to end her life with dignity before brain cancer could do its worst, she was met with both admiration and condemnation. The Vatican's Monsignor Ignacio Carrasco de Paula called her act "an error" and said, "Suicide is not a good thing, it is a bad thing because it is saying no to life."
Julianna and her family have no plans for giving death an assist, but they are making a conscious decision to not prolong life, and with a medical industrial complex that has the means to extend a heartbeat and a breath well beyond its comprehension of whether that heartbeat and that breath should be let go, the right to refuse every means necessary is hard for some to grasp. Harder still for the critics of Julianna's family are the questions of whether a child her age is capable of deciding on her own course of end of life care, particularly when her choices are so clearly informed by such a decisive and certain religious point of view. "This little girl doesn't even understand what she is agreeing to, this is borderline assisted murder," wrote one appalled reader on USA Today. Another reader, responding to the family's original post, said, "That mother asks her leading questions. This article sickens me."
My own children are being raised in a Christian household, but one which gives everybody room for asking questions and expressing doubt. I tell my kids that we don't know where their grandfather or my friend Debbie are now that they're gone, and that anyone who tells them they do know is not telling the truth. That's the wager of faith we make here. Others, in their grief, find talk of heaven and the afterlife only insults their own beliefs. But I also get that a young child who has had to face much too much ugly, painful truth already deserves the comfort of belief more than any outside stranger's skepticism. And when a family doesn't have the luxury of assuming a long life for one of its members, when it has had so much taken from it and so much yet to lose, who's to deprive them the hope then of something else, something better, on the other side of it?