Inside Our Heartbreaking Decision for Our Dying Child

It started almost on a whim.

Struck by the powerful conversations about death she was having with her terminally ill 5-year-old daughter, Julianna Snow, Michelle Moon, 43, sat down late one April evening last year, started writing – and sent it to the website The Mighty that same night.

“I just wanted to share them with more people,” she tells PEOPLE exclusively. “I knew about the Mighty because some of their stories appear on Yahoo. I didn’t think anything would come of it.”

And it really didn’t until CNN.com posted a two-part story about the family last October, complete with ethicists debating whether a child should be allowed to help decide their end-of-life care. That’s when it began making headlines around the world.

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

Equally shocking was some of the criticism aimed at them, she says.

“I’m talking about the most painful thing in my life and people are judging me,” says Michelle.

She decided to ignore the naysayers and keep posting about her daughter on the blog she started in July.

“I just wanted people to know Julianna,” she says of why she started the blog. “I just felt like there’s so much she can teach us.”

Julianna has a severe form of Charcot-Marie-Tooth Disease, an incurable, degenerative neuromuscular disease that has slowly robbed her of her ability to walk, eat or even breathe on her own. She wears a breathing mask over her mouth and nose 24 hours a day and is fed through feeding tubes. The next cold she gets could kill her.

In October 2014, after Julianna returned home from yet another lengthy and torturous stay in the pediatric intensive care unit, Michelle and her husband Steve Snow, 38, a U.S. Air Force veteran (they also have a 7-year-old son, Alex) made the difficult decision to place their little girl in hospice at their Washougal, Wash. home.

They also “made it very clear to Julianna that if she got sick again we d take her to the hospital,” Michelle says.

Four months later, in February 2015, she and Julianna began having conversations about dying, which she detailed in her essay entitled “My Daughter Wants to Choose Heaven Over the Hospital,” which was posted on The Mighty in May.

“Julianna made it clear to us that she does not want to go to the hospital again,” Michelle wrote. “I do not think that she will survive another illness, especially without aggressive intervention. Julianna understands this too. We have had some remarkable, uncomfortable, humbling conversations about heaven.”

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

J: Not the hospital.

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

J: Yes.

M: And you know that mommy and daddy won t come with you right away? You ll go by yourself first.

J: Don t worry. God will take care of me.

The next morning she told her husband.

“I said, ‘I think we have to rethink our plan to take her back to the hospital,’ ” she says.

After talking it through with their medical team, Michelle and Steve decided Julianna’s wishes could not be ignored.

“I want to make it clear these are not Julianna s decisions or choices,” Michelle says. “They are Steve and my decisions, but we look to Julianna to guide us.”

She says they’ve been comforted by other families with similar tales who have reached out to them.

“When you’re confronted with something so difficult, you simply want to know that it’s survivable,” she says, “and it helps to hear from people who have been there.”

She also knows from her own research how few resources there are out there to connect families dealing with end-of-life decision making for their children.

“People don’t like to talk about end-of-life issues,” she says. “It’s depressing and uncomfortable. We are just starting, I think, to talk about them more for adults, but no one even wants to think that kids die.

“It’s much easier to hear about the success stories and people who defied the odds,” she says. “I understand that, but unfortunately, terminal disease in kids exists, and families need a LOT of help.”

In December, Julianna caught her first cold in more than a year – and, after talking with Julianna, they and her team of nurses successfully treated her at home.

It was yet another reminder of how precious their time with Julianna is – and of how extraordinary their little girl is.

And the next time she gets sick? Well, they’ll just have to see, she says.

“I can’t predict how things will unfold,” she says.”I know that we will most likely not take her back to the hospital again if she gets sick.

“The most important point is that we will make these decisions the way we have in the past,” she says. “We’ll look at the whole picture – and that means listening to her.”

For more on Julianna Snow and her family, pick up this week’s PEOPLE, on newsstands Friday.

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