Monday, 2 November 2015

Julianna's Choice

This is not a happy, feel good story, it's sad and has Old Knudsen weeping like an aroused vagina or an American who has had their guns taken away.

Julianna Snow is a 5 year-old with an incurable disease, spinal muscular atrophy. It kills most of its victims before they reach 2 but she's still ticking. The next time she catches a cold she could easily get
pneumonia. If she gets to the hospital and they manage to save her she could very well live out the rest of her days sedated on a respirator .... or not. There is no cure or getting better, the lass is dying. Slowly but faster than most of us.

 With her brother Alex. 

Julianna lives life as best she can wearing a different Disney princess dress each day and watching videos, she has lots of family that visits her. When she eats out she has to eat soft food like Mac and Cheese but she doesn't express bitterness or resentment at not being able to eat pizza like everyone else nor does she begrudge her brother as he runs around the toy aisles, she seems wise and at peace for someone so young and so sick. 

Her parents have given her a choice, the next time she gets sick she can go to the hospital or she could stay at home and die. Her mother Michelle has been prepping her for death. She'll go to Heaven and get to meet her great-grandmother and she can run, play and eat .

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.

Psychiatrists have said that there is no way a child can understand the concept that she has been given a choice on. Up to the age of 6 they think that death is temporary and reversible. They adopt magical thinking and don't really understand the concept of Heaven or Hell. 

Psychiatrists like any other trained physician do not know everything and hey some kids have a deeper understanding of things than others. It looks like her parents are well into the magical thinking themselves. Of course you tell a dying person what will comfort them, it's lies but with the best of intentions. 

The Bible doesn't say what Heaven is like just as it doesn't say that kids have to be asleep for Santa to visit. Adults make shit up. There is no proof of Heaven and as for the Bible, it just doesn't stand up to scrutiny ... yes, that shit is made up, it's mythology dude, nothing more. 

Being ill can be draining and if this is the quality of life you can expect then hope goes too. I know that some adults with suicidal thoughts are not thinking about the long term or anyone else who their death might effect and their tunnel vision just wants them to die for a rest from all the shit ... an easy button. 
Does Julianna just want to avoid the nasty hospital? Is she using magical thinking by wanting to stay at home and maybe nothing bad will really happen? Is she saying what her mother has talked her into?     

Death is the inevitable out come but a 5 year-old making a choice like this with one of the options based on lies and wishful thinking, well I don't think it's fair, none of this situation is fair though.  What would you tell her? 

When you die we don't know if there is anything more but we like to believe there is so we make stuff up. Not very comforting.

Old Knudsen believes there is something more, having seen and experienced what you may call spirits yeah there is something else, no idea what though but it doesn't seem scary nor a form of punishment at all. It seems like something different to what we are used to, less confining. I've had enough personal experiences to see death as an adventure, the next chapter in which I find out a load of stuff before becoming a new life with very little memory of my last life .... the fucken circle jerk of life. 
Yes I kinda look forward to death but I also look forward to the next season of The last ship and the next episode of The walking dead, too much to still experience before this old coffin dodger carks it.         

If Julianna is suffering then let her go but don't wash your hands by saying it was her choice. You don't let a child play with a box of matches in a paper factory because they made the choice to do so. We lie to each other and to ourselves in order to feel better, who wants to decide to let their child die? ... just pass the buck to them huh, that's what a responsible adult would do.

Who is making this choice really for? 


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