Family, Heartbreak

Letting A 5-Year-Old Choose Between Living Or Dying Is INSANE

julianna snow

Parenthood is an awesome responsibility. I don't use that word lightly. When my son was born, I became his mother and he became my responsibility. There are basics I need to provide for him: food, shelter, and education.

For my children to grow, to succeed, I, like most parents, go beyond the basics. I teach my sons about love, about empathy. I teach them to respect the world we live in and the people who surround them. I want my children to be independent free-thinkers who question what they're told ... eventually.

In the meantime, I need to guide them because they're kids. And I'm the mom. Thusly, I make the important decisions for them.

Noah, my older son, is five, the same age as Julianna Snow. Julianna isn't a normal 5-year-old  she has Charcot-Marie-Tooth disease, an incurable neurodegenerative illness. I cannot imagine the pain she and her family go through on a daily basis as they grapple with her illness and her prognosis.

One of the ways they've coped is to allow Julianna as much control over her life as possible. At the ripe age of five, Julianna knows that the next time she gets sick could be the beginning of the end.

According to CNN, "Her coughing and breathing muscles are so weak that the next time she catches even a cold, the infection could settle in her lungs, where it could cause a deadly pneumonia. Her doctors believe that if they can save her under those circumstances and that's a big if she will likely end up sedated on a respirator with very little quality of life."

Because of that, her parents have given her the ultimate power over her situation. They've told Julianna she can either go to the hospital to possibly be helped or stay at home and die.

It's tragic what this family is going through, but it's not fair to give a 5-year-old such responsibility. Julianna's parents have entrusted her with the most important decision a person could make. I don't entrust my son with the decision to choose his own lunch.

I want Noah to make good decisions as an adult, so I encourage him to make choices throughout the day  but they're guided choices. Last month, when it began to get colder, I removed the shorts from his drawer. Now, he's free to choose any pair of pants he wants. I've eliminated what I don't want him to choose, allowing him a controlled freedom.

When it comes to food, sure, he can choose what he eats, but I'm the one stocking the shelves and filling the refrigerator. If he wants sugared cereal, he's out of luck because I don't buy it. It's just not an option. But he's welcome to eat the granola or oatmeal that I do buy.

If my son chose what he ate, he'd have a non-stop buffet of French fries, ice cream, cake and candy. If he chose how to spend his days, he'd play video games and watch movies, all day, every day. If he ran the show, he wouldn't brush his teeth or do homework or be nice to his brother.

That's why I'm in charge. Left to his own devices, my son would act, well, like a child. My job is to teach him how to become a responsible adult.

Like many boys, my son likes to pretend to shoot guns. He'll hold up his fingers to shoot lasers at unsuspecting people in the grocery store. He shoots me with a fart gun like Gru in Despicable Me. He pretends to be Spider-Man, shooting his web over his brother. "You're dead!" he yells gleefully when he makes (imaginary) contact.

He doesn't understand death. How can he? He doesn't yet understand life. How could he possibly know the finality of death?

According to her mother, Julianna is "scared of dying, but has, to me, demonstrated adequate knowledge of what death is." I'm 38 and I don't think I could demonstrate adequate knowledge of what death is. And I'm certain my 5-year-old couldn't.

Noah is a smart kid. He began writing at two and reading at three. He currently does third grade math. But none of that matters, because no matter what he reads or can recite, he's five. His brain is undeveloped in crucial ways. I still need to remind him to pee when he leaves the house.

Would Julianna's parents allow her to make day-to-day medical decisions for herself? Did they allow her the choice to get vaccinated? I probably shouldn't even start the vaccination questions. But it's the same point shouldn't her parents choose to do what they think is best for her?

Perhaps dying at home is the best thing for Julianna. I don't know; I'm not qualified to make that decision.

But neither is a 5-year-old.