Posted on 10/27/2015 3:08:20 PM PDT by windcliff
Since birth, Julianna Snow has suffered from an incurable neurodegenerative disorder that has had her in and out of the hospital, and has prevented her from going to the City Bible Church in Portland, Ore., where her family belongs.
Tribune Media Wire reported that when 5-year-old Julianna was 4, her family made her an offer: The next time she got seriously ill, she could choose to go to the hospital or heaven. There, they said, she would be able to eat without a tube, play and run— everyday activities other kids get to engage in but ones that Charcot-Marie-Tooth disease, or CMT, has robbed from Julianna.
At first, Julianna's severe case of CMT debilitated her arms and legs, but now it’s targeting the nerves that control her breathing muscles, according to the wire service.
Michelle Moon, Julianna’s mother, shared her family’s story on The Mighty, a blogging platform for families coping with devastating disease and disability. In the post, she recounts a conversation with her 4-year-old daughter:
“Moon: You don’t want to go to the hospital, right, J? Julianna: I don’t like NT [naso-tracheal suction, the thing she hated the most from the hospital]. Moon: I know. So if you get sick again, you want to stay home? Julianna: I hate NT. I hate the hospital. Moon: 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) Moon: 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. Moon: That’s right. You will not be alone.”
God also will be in heaven, and he will love her more than her parents do, Moon and Steve Snow explained to their daughter.
(Excerpt) Read more at foxnews.com ...
Without having walked in their shoes I cannot imagine how my wife and I would have acted. I can say I would do everything possible to save my child.
What a horrible choice.
This oughtta be good. Assisted suicide meets compassion meets religion.
The People’s Republic of Oregon would have applauded Mommy if she had aborted her little girl or talked her into having sex change surgery. But they will probably charge her with child neglect and failure to seek medical assistance in this sad case.
From what’s in the article, it’s apparent that the mother is coaching the daughter, so I disagree that the daughter is making the decision.
That’s my sense too. I know it’s hard to talk to a child like an adult, but the conversation I read made me ill. It was beyond coaching, it was advocacy.
I agree. I 5-year-old shouldn’t be asked to make such a decision. Sounds like the mother is leaning on her, and suggesting that she wouldn’t be a proper Christian if she went to the hospital.
My father was 94 when he passed. He had a living will. It was understood that I would not put him in a hospital to breathe his last breaths but would let him die at home. Many people with terminal illness make that decision. For a parent to make that decision for their child would be extremely difficult. Including the child in the decision ???? Depends on the child and maturity. I’d prefer holding my child at home than put them in a cold steryl institution Put it would be a private moment with family friends and pastor not something to share with the world
In today’s world if the little girl had decided on a gender change, a judge would have enforced it.
What a frightening, devastating discussion to have with your four year old child. This is that family’s reality, a cycle of surgeries, recoveries, and the ongoing process of her illness, both incurable and unstoppable. It has been that way since the girls’ birth. Some would consider this as child abuse, and with some children, it would be. There are other children, who have deep wisdom, as they have been forced to think, forced to try rationalizing a life full of pain, inconvenience and a fair amount of loneliness.
Some children DO know what their saying, when considering the big topics.
Many of us underestimate what a child is capable of or prepared to experience. My prayers go to this family, that they receive the guidance and the peace of mind needed to make the correct decisions. Wow.
Just the words sound like she was leading her to stay home.
The problem is that we only see the printed word, and miss the facial expressions, the pauses, the emotions, the inflections, which convey a lot of contextual info just dialog/printed words don’t.
It is the same problem we face here on FR with discussions and people misunderstanding someone’s post the wrong way.
5 year olds can make decisions of that there should be no doubt but why would it matter if there was no coaching and the kid wanted to die? Would you honor the decision so long as there was no coaching?
What is in doubt is the meaning of the decision. A five year deciding on ice cream flavors is one thing but deciding on life or death is different. No five year old should have a say on living or dying.
The kid is 5. The parents could have just as easily asked her if she wanted to go be with Santa Clause. I support the parents decision what ever it is but they should go about it honestly and admit they think it better for their child to die and cease with the suffering and prolonged death.
Children may be smart, wise, mature, and etc. but they are still undeveloped and utterly dependent on others which removes any notion of free agency in their decisions. You cannot allow children to make a decision like this.
OK, who should have a say.
Should it be the doctors, the judges or the parents?
I say the parents in the end. The parents should decide when their child has suffered enough.
If the parents have decided that their child has suffered enough and they wish to include their child in on the decision as a family matter who are we to judge?
I personally am sick of judges, lawyers and doctors butting in on parental rights concerning children.
My mozilla browser tried to block this page saying it was an attack site. Is this an attack againts Freepdom or what?
If, as is the case, our society allows parents to decide to decline treatment for their children when a child has an incurable fatal disorder, it seems odd to fault parents for doing this in a way that involves consulting the child, yes even consulting the child in a leading way.
If I had to participate in making such a decision, publicizing the event on Facebook would be among the last things I’d ever consider doing. Some may publicize because they want to be persuaded on way or another.
It’s a big responsibility, one that can never be undone or reversed.
I agree that the child does not really understand the concept of death but seriously I don’t think that adults do either. So I think you should allow the parents in a case like this a little self-delusion of the child’s choice to end her own suffering.
Essentially the parents have been trying to prepare their child for death and have decided that their child should die at home rather than endure a prolonged and uncomfortable death in a hospital. I see no harm of any kind in what they are doing.
Personally I admire their courage. It may have been better if they had kept this private but I suspect that they thought that their decision would be universally supported by their on-line group.
Well we do tend to attack (verbally) the enemies of freedom.
This is child abuse. Telling the kid to choose death is child abuse.
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