At
five years old, Julianna Snow suffering from an incurable disease, degenerative neuromuscular disease called
Charcot-Marie-Tooth (CMT), which has had her in and out of hospitals for the
past 18 months enduring "countless procedures" and spending
"weeks at a time trying to breathe," made the strangest decision. Her mom, Michelle
Moon, wrote in a post entitled "My Daughter Wants to Choose Heaven Over
the Hospital" on The Mighty, a website for families struggling with
disabilities, serious diseases and life and death issues
So earlier this year, her parents, Michelle Moon and Steve
Snow, asked her what she wanted to do the next time she got seriously ill and
needed to go to the hospital. Their daughter chose heaven, her mom, who also has a blog,
wrote on the website.
"A few months after we started hospice, Julianna made
it clear to us that she does not want to go to the hospital again," says Michelle. "Like so many kids who have had to face
life-threatening illness, she is wise beyond her years – but she is still only
5 years old. "I do not think that she will survive another illness,
especially without aggressive intervention," she wrote. "Julianna
understands this, too. We have had some remarkable, uncomfortable, humbling
conversations about heaven." Last month, it was this: Before these conversations,
Michelle says she and Steve had planned to take Julianna to the hospital if she
got sick again. But after hearing Julianna's wishes, they changed their minds. "She made it clear that she doesn't want to go through
the hospital again," Michelle wrote. "So we had to let go of that
plan because it was selfish."
Diana Scolaro, the nurse who took care of Julianna through
three stays in the intensive care unit, also supports Steve and Michelle's
decision.
"You have to know what it's like to hold
down a child and hear them scream so you can stick a tube down their nose.