To the little girl who wants to die. It is not up to me to make your decisions for you. I don’t feel your pain, I don’t understand your day and I will not be there when it happens. I want you to know that I find you to be brave, wise beyond your years and a beautiful little girl with a strong spirit.
“Don’t worry. God will take care of me.”
5-year old Julianna Snowhas doesn’t want to suffer anymore. Diagnosed at birth with the incurable neurodegenerative disease, she seems to understand more than I ever will, pain and suffering. When her parents asked her if she wanted to go back to the hospital when she got really sick again, she said no. She wanted to stay home… even if it meant entering Heaven without her mom and dad.
I can not imaging what her family is going through. Their own internal agony must be overwhelming. But worse, the backlash that Michelle Moon and Steve Snow, her parents, are subjected to for sharing that they would let their 5 year old make the choice whether to live or die when the time comes, is so heartbreaking to me.
The world can be so cruel, so judgmental and so nearsighted. Julianna’s condition, Charcot-Marie-Tooth disease, a form of spinal muscular atrophy, and usually kills children before the age of 2. She is 5. She is in and out of the hospital, in certain constant pain and none of us can understand how mature that battle makes even the tiniest person.
I don’t know what I would do if I were in her parent’s shoes. I would want to see my baby alive. Watch her grow up and be happy. I would move Heaven and Earth to make sure she had as painless a life as possible. That she would know more happiness than pain. I can not imagine the sheer strength it took for these parents to even ask little Julianna the question.
I don’t know where I stand on the right to die initiative. I think that if we euthanize animals to prevent their suffering, patients should be allowed the same option. However, I grew up understanding that God is the ultimate decider of when it is your time is to go. I have been in a house where I watched a man take his next to last breath and then breath no more. I stood in the still room, family surrounding him, crying and talking about the loss. It seemed peaceful but I know that the pain he suffered prior to his natural passing was excruciating. Pain meds seemed to help… but they are not magic.
So I can’t pick a side. It is such a hard and personal decision. Julianna is not asking for a cocktail to force the issue. She is just asking to let nature take it’s course without medical intervention. I don’t see how it is wrong that she be able to make that choice for herself, no matter how old she is.
But to you, beautiful, little Julianna Snowhas, whose shoes I will never be in, I am here to respect and support you without question. For it is not I who has to endure your daily battle. It is not my place to judge. It is only my place to offer you deep prayers, unconditional love and an understanding that is beyond what I can comprehend. I want you on this Earth so people have time to understand that, sometimes, things just don’t make sense. I want you well. I want you happy. But if it can’t happen, I want you to live in peace… until peace is given to you.
To your parents I wish nothing but love, prayer and support as they are faced with what no parent should have to endure. I can not imagine… not even a little bit, what this is like for them. How strong they will have to be. How weak they must feel.
Much love, little sweetheart, as you make decisions wise beyond your years that no one else has the right to judge.