Last Updated on June 13, 2017
The parents of a child battling an incurable disease where she’d prefer to go if a life-threatening infection strikes again: the hospital or heaven.
This is a tough subject to write about, and it’s an even tougher scenario to imagine finding yourself in.
Julianna is just five years old. She suffers from an incurable degenerative neurological disease called Charcot-Marie-Tooth disease.
At age 2, she could sit up unsupported and walk with a walker, but by age 4, she couldn’t do either. Bouts of pneumonia put her in the hospital for painful treatment three different times over 10 months, and doctors told her parents if there was another instance, they couldn’t guarantee they could save her.
That prompted a difficult discussion: Julianna’s mother asked her what she wanted to do if she got sick again: return to the hospital or stay at home if staying at home meant she would likely die and go to heaven. Her mother provided a transcript of how the conversation went.
Some have criticized the family for even considering putting that kind of decision into the tiny hands of a four-year-old. Some even suggested the questions were “leading,” calculated to steer her towards choosing “heaven,”  a concept she couldn’t possibly fully grasp.
The child’s mother says her daughter understood the implications: she understood what death meant and understood what heaven is, too. For people who do not believe in heaven, of course, there’s no accepting that response.
But there are plenty of Christians who understand what we think heaven is (not to mention what we hope it will be), without any clear certainty that the heaven we expect will be the heaven in which we find ourselves one day.
In any case, the child chose against a return to the hospital. Her parents told CNN they will honor her request, saying they were abandoning their plan to bring her back to the hospital the next time she needs that sort of treatment because it would be “selfish.”
This is a decision no family should ever have to face to begin with. How sad it is they have to discuss such a subject with a child of four. How sad it is, on top of that, they are being criticized by others who haven’t walked in their shoes and haven’t, specifically, seen what this little girl must go through for treatment everyone is so sure will only be a painful prolonging of the inevitable.
I can’t help but wonder why they assume a child who is able to understand the pain she must endure to be able to live longer can’t possibly understand the implications of the alternative.
