If your child was in so much pain and wanted to die, what would you do?
This was the decision Julianna Snow’s parents had to face when they asked their 5-year-old daughter if she wanted to go back to the hospital or to heaven.
Julliana said she wanted to go to heaven.
Julianna’s condition
Julliana has Charcot-Marie-Tooth disease, a nerve disease inherited from a mild form of her father’s.
Julliana was showing full-blown symptoms, which meant her nerves were slowly but surely degenerating. After a simple cold turned into an 11-day stay in the ICU hooked up to a ventilator, the doctors said even the nerves that let her breathe were being eaten by the disease.
She needed a tube every few hours pushed into her nasal passage to clear away phlegm. She could not be sedated because it might kill her. She cannot move the controls of her chair or even swallow or breathe on her own. She gets weaker and worse every month.
“I would like to go to heaven”
Doctors eventually told Michelle and Steve that another infection could kill their daughter. If that happened, would they like to take her to the hospital or just let her stay at home instead?
After seeing Julianna unable to shout or scream through the pain of her nasal tube because she was so weak, her parents decided to ask her what she wanted.
“Do you want to go to the hospital again or stay home?”
Here’s their conversation, as posted on the Mighty, where Michelle contributed:
Michelle: Julianna, if you get sick again, do you want to go to the hospital again or stay home?
Julianna: Not the hospital
Michelle: Even if that means that you will go to heaven if you stay home?
Julianna: Yes… I hate NT (naso-tracheal suction, where a tube was placed down her nose into her lungs without sedation). I hate the hospital.
Michelle: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?
Julianna: (nods)
Michelle: And it probably means that you will go to heaven by yourself, and Mommy will join you later.
Julianna: But I won’t be alone.
Michelle: That’s right. You will not be alone.
Julianna: Do some people go to heaven soon?
Michelle: Yes. We just don’t know when we go to heaven. Sometimes babies go to heaven. Sometimes really old people go to heaven.
Julianna: Will Alex (her 6-year-old brother) go to heaven with me?
Michelle: Probably not. Sometimes people go to heaven together at the same time, but most of the time, they go alone. Does that scare you?
Julianna: No, heaven is good. But I don’t like dying.
Michelle: 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.
Julianna: Don’t worry, I won’t be alone.
Michelle: I know. I love you.
Julianna: Madly.
Michelle: Yes, I love you madly. I’m so lucky.
Julianna: And I’m so lucky.
Michelle: Why?
Julianna: Because you love me madly.
What happens now?
Steve and Michelle are grateful for the past year because their daughter hasn’t had any infections. But they know it’s only a matter of time.
Still, Julianna is the wise one. She tells her mother about her plans for heaven, for when they will be together again, saying, “I’ll run to you really fast.”
READ: Mom chooses to die so son can live