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There, just moments later, as his pink skin began to turn to dusk and his mouth stopped reaching for air. And then she wailed so deeply that I felt my own bruised grief meet me in the room. There was no one to tell me when to stay or when to step out on my first end-of-life shoot, where I hovered in a hospital room as a family said goodbye to their 3-year-old girl dying from a rare metabolic disorder.

When I am in those rooms, I am present with the sole goal of finding the moments within grief that feel the most gentle and human: Watching a mother brush the hair of her dying child, I was able to recognize the love and tenderness that accompanies us even in death. Listening to a child cry over the loss of his sister, and then get back up and start playing again next to her body, reminded me of the resilience we all carry with us, that my family and friends are capable of as well.

They will also continue to live on if I die too soon. Those who have traveled to that pitch-black room of grief, into the depths of it, know well how in our most horrific of moments we are met with small pricks of bright light, piercing and strong. I carry my points of light with me every day — the I. I am the quiet presence in the background, stepping in only to save the image they will want to hold onto later. I have no communication with them once I leave, despite having spent hours at the bedside of their dying child.

There is nothing left between me and them but the images, the precious evidence of a bright life lost but loved fiercely. At night, editing the photos alone on my computer, I often light a candle and turn on music. I click through the set, adjusting the brightness, the cropping, pouring careful attention into each one. The Emericks went over the plan: no breakfast, just pills to calm their stomachs at 9 a.

On their final morning, Charlie saluted the camera farewell as he was wheeled down the hall, Safran got a tearful last hug from her mother, and Charlie and Francie clasped hands after they swallowed the drugs. There was no funeral. In the interim, the video has become comforting and precious to the family, said Safran.

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Stephen Drake, research analyst for the disability rights group Not Dead Yet, had serious reservations about making the video public. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente. Contact us at editors time. They died less than a year later. Related Stories. You don't think. If she gets sick, we'll ask her again, and we'll honor her wishes. She continued: "Very clearly, my 4-year-old daughter was telling me that getting more time at home with her family was not worth the pain of going to the hospital again.

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I made sure she understood that going to heaven meant dying and leaving this Earth. And I told her that it also meant leaving her family for a while, but we would join her later. Did she still want to skip the hospital and go to heaven? She did. For adults, end-of-life decision-making is relatively straightforward: Basically, we get to decide how much medical treatment we want and don't want. Without realizing it, Michelle and Steve had stepped into a heated debate.

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Julianna toward the end of her third hospitalization in October Bioethicist Art Caplan has read Michelle's blogs, and he thinks she's made the wrong decision. It makes me nervous," he says. But I think there's zero chance a 4-year-old can understand the concept of death. That kind of thinking doesn't really develop until around age 9 or He says Julianna's parents shouldn't put any stock in what she has to say about end-of-life decisions.

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Maybe she chose heaven over the hospital because she feels how much her parents hate to see her suffer; young children often pick up cues from their parents and want to please them, he says. Caplan, before he started the bioethics program at New York University a few years ago, worked at the University of Pennsylvania and consulted on end-of-life cases at Children's Hospital of Philadelphia with Dr.

Chris Feudtner, a pediatrician and ethicist there. Caplan respects him a great deal. At his hospital, he has asked dying children her age what they want to do, and in the appropriate circumstances, he has taken it into consideration. For example, he doesn't take their opinion into account when it's a black and white decision -- children with treatable leukemia must get chemotherapy, for example, no matter how hard they protest.

But when the choice is gray, when there's more than one reasonable option, as there is with Julianna, he has put stock in their wishes. As for a 4-year-old not having the mental capacity to think through death, he's found that even adults often don't think through such issues as carefully as one might like.

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I don't know. Feudtner, the chairman of the American Academy of Pediatrics section on hospice and palliative medicine, says as best he can tell from Michelle's blogs, Julianna's choice for heaven over the hospital is reasonable and her parents are right to listen to her. It's about choosing how you want to live before you die," he says. Art Caplan's words sting Michelle when she hears them. How could he deign to understand her child? But then a few days later, she wrote to CNN to say that she understands how someone could have a difficult time understanding what she and Steve have decided.

If you haven't met Julianna, she says, it's hard to explain how even at such a young age, she understands the choice that's in front of her, how she's the one who experiences the suffering and should get a say in what will happen to her. Julianna reads to uncle Fred.

Danny Hsia, her pulmonologist, observes that Julianna is wiser than most 5-year-olds. I have the utmost faith in her mother and father. They're phenomenal parents and have her best wishes at heart," he says. He believes that when Julianna gets another infection, the hospital will likely not be able to save her. Diana Scolaro, the nurse who took care of Julianna through three stays in the intensive care unit, also supports Steve and Michelle's decision to listen to their daughter. It's one thing to do that when you know you'll have a success at the end, but for Julianna, there is no success," she says.

Scolaro cries as she tries to express her wishes for Julianna.

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Every day is a blessing. Every day is a gift. For now, Julianna spends nearly all her time in that princess room. In her closet hang dresses for pretty much every Disney princess there is, and each morning she picks out which one she wants to be. She's happy, watching videos and chatting nonstop with a steady stream of family, friends and nurses. She makes up elaborate fantasies, that her bed is a magic carpet, that she and her grandmother go on a shoe shopping trip together; Julianna buys one high-heeled red pair and one "low-heeled" blue pair.

Then, they go to a restaurant and she orders macaroni and cheese. Julianna recently celebrated her fifth birthday in a tiara and princess dress. Julianna displays no bitterness that she can't actually eat real food or go on a shopping trip.