The sky Or in the hospital: in the interior of the family a Heartbreaking and Controversial decisions

Posted by: Newswalle

Started almost on a whim.

Beat of powerful conversations about death she and her terminal patient 5 years of age, a daughter Julianna snow, Michelle moon, 43-year-old sat afternoon April last year, began to write and sent him to the side of the Powerful in the same night.

“I just wanted to share with more people”, tells PEOPLE exclusively. “I knew about the powers that be, because some of your stories will be in Yahoo. I don’t think anything would come.”

And really not before the novel was published in two parts about the family, which was discussed in October last year, complete with experts in the field of ethics, if the child should be allowed to help decide, at the end of its life cycle. That’s when it started, it made headlines around the world.

“I was surprised,” says Michelle, a neurologist.

It was amazing what some of you said about the criticism.

“I say in pain from something, to judge that in my life and the people, me,” says Michelle.

She decided to ignore the enemies and continue to send via his daughter on the blog began in July.

“I just wanted to let people know, Julianna,” she says of why he started this blog. “I felt that there’s only so much they can teach us.”

Michelle moon (left) and Steve snow with Julianna in December

Charles Gullung

Julianna went severe form of the disease Charcot-Marie-tooth syndrome, an incurable disease, neuromuscular degenerative disease slowly stole-the ability to eat or breathe on her own. She wears a mask over your mouth and nose, 24 hours a day and is administered intravenously. The cold side – you could kill you.

In October 2014 Julianna, after I came home, after so long a stay in the intensive care unit for children, Michelle and her husband Steve snow, 38 years old, a veteran of the air force of the United States of AMERICA (also took a delay of 7-year-old son, Alex) a tough decision whether you want to Wash your little daughter in care – hospice in your Washougal,. house.

He also made it clear: Julianna, if you’re sick says we are happy again with her in the hospital,” Michelle.

Four months later, in February 2015, and Julianna began with conversations about death, which describes in detail in his article entitled “My daughter, in the sky hospital”, was released in may Powerful.

“Julianna is clear to us that you do not want to go to the hospital,” Michelle wrote. “I don’t think she’ll live, another disease, especially without aggressive intervention. Julianna knows it too. We’ve had some wonderful, frustrating, humiliating that talks about the sky.”

Me: Julianna, if you get sick again, how you want, you go to the hospital or stay home?

J: it’s Not a hospital.

M: Even if it means that they will go to heaven if you stay at home?

J: Yes.

M: And you don’t know what mom and dad their comes immediately? They go in the first place.

J: don’t worry. God will take care of me.

The next morning, her husband said.

“I said, ‘I think we’ve revised our plan to have him back in the hospital”,” he says.

After the consultation with the doctor, Michelle and Steve decided, Julianna desires I could not be ignored.

“I want to clarify that it says Yulianna decision,” Michelle. “They’re Steve and my decisions, but we hope that Julianna takes us.”

She says, reassured other families with similar stories that come to you.

“If you’re faced with something so difficult, just want to know resolve,” she says, “and to hear” help” the people who were there.”

She knows also that his own research of the few resources that are on the market to connect to the families that relate to purpose-of-life decisions for their children.

“People don’t like to talk about life problems,” she says. “It’s sad and uncomfortable. We are just starting, I think, to talk more for adults, but I don’t even want to think that children die.

“It’s a lot easier to hear success stories and the people he odds,” she says. “I understand that, but, unfortunately, the end illness in children exists, and that families need special help.”

In December, Julianne he’s the first frost in over a year, and after a conversation with Julianna, and his team of nurses successfully treated home.

It was another reminder of how valuable your time with Julianna, but something specific for your little girl.

And the next time she’s sick? Well, let’s see, she says.

“I can’t predict what should be built,” she says.”I know that it is very likely that you won’t wear again to the hospital when sick.

“Importantly, these solutions, which, as we have done in the past,” she says. “We see the whole picture, and that means she hears it.”

For more information about Julianna snow and his family, to gather PEOPLE that are in this week’s Friday sale.