This story is both heartbreaking and beautiful. Check out the full article HERE
A 5 year old girl named Julianna has been living with a severe neuromuscular disease all her life. The disease causes foot deformity, loss of muscle in the legs and makes movement, balance, swallowing and breathing difficult for those who suffer from it. Julianna currently uses a breathing mask because of the severity of her condition. Her family has now honoured her wishes to die at home.
Words cannot describe how tough that decision would be for her parents, and her Mom shared a conversation she had with her daughter online.
J: I hate NT. I hate the hospital.
M: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?
M: And it probably means that you will go to heaven by yourself, and Mommy will join you later.
J: But I won’t be alone.
M: That’s right. You will not be alone.
Experts say it is not possible for a child of Julianna’s age to understand the concept of death, but her parents disagree as their child has been dealing with such a terrible disease all her life.
I cry for this family although I do not know them. I know the fear of death and have mourned the loss of relatives, but this is something many of us will never have to experience. Their pain is not known to us. The decision they made (although critiqued by many), is something we would never have to decide.