The story of Julianna – the child that has been talked into choosing death over life due to having a disability is so wrong on so many levels. I am devastated that this type of attitude STILL exists.
My children choose life over anything. It is what they were taught and how they were raised. They had Spinal Muscular Atrophy and “should” have never reached adulthood. I have stories of hundreds of similar children that should never reached adulthood or lived good lives.
But they did reach adulthood. The did live good lives. My son Dan died in a CAR ACCIDENT – he did not die from SMA.
The idea that a CHILD should be able to choose whether to live or die is so wrong. That child only knows what it’s parents have told it. This child has no clue about what being dead means. Instead she should be celebrating life and be grateful for every day and her PARENTS should be celebrating her life with her as well and supporting her through the pain.
Who – who – who has a perfect life? A life without challenges, a life without health issues. Look around you – who has not dealt with some kind of serious health issue? Who was able to live a life after a devastating diagnosis?
This is not about “right to life” or “right to die” – it is about living your life. At what point do we decide to not allow children with disabilities to continue to live? Are we back in the dark ages? Are we in the cultures that kill girl babies because they are not acceptable to have as children? Are we in a culture that decides who will have quality of life and who won’t?
I was going to stay away from this issue because it HURTS so much that our society still cannot accept that no life is perfect and that those that are different must be removed from our lives.
Yes I support the Right to Die movement – with a LOT of caveats. A FIVE YEAR OLD cannot make the decision to live or die. A five year old with the possibility of a full life that just has some challenges. Her parents said it was selfish to keep her alive – I say it is way more selfish to allow her to decide to die. In their minds they have already buried her. I feel sorry for them and for her. Because her life appears to be full of “poor thing” “she is in pain, we must end this” “if she gets sick again she will die”. LET HER LIVE – help her live. Give her happiness, sing to her, color with her, play with her. Bring her light and happiness. Let her be a child and let her grow.
If she gets really, really sick and cannot be treated and cannot live, at that time let her go. Don’t let her go before you even try to give her a life.
I know of what I speak. I am not a bleeding heart or religious zealot. I lived the life with my children. We lived with positive energy among people that said they needed to be “put in a home”. There are people in our family that gave up on the boys at the time of diagnosis. They outlived their anticipated lifespans. They had surgeries and struggled. They lost other family members to cancer. They had lives. They had challenges. They didn’t want to die.
They choose to live regardless of the difficulties.
Attitude is everything. Julianna’s parents – I beg you to stop treating your daughter like she is dead already. I beg you to not treat her like a family pet that should be put down. I beg you to treat her like a child and love every minute with her – the challenges, the problems, the smiles and kisses. Stop telling her that heaven is better than earth. She needs to be able to understand that she can be a happy person with a life to live. Her parents need to understand that she is a child with a purpose and a life to live. To not treat her illness the next time she is sick because she *might* sink into a vegetative state is playing God. You don’t have that right. In this case I hope that an agency steps in and takes her from you since you don’t want her anyway. She is a burden you don’t want to deal with.
My words sound harsh? They are meant to be. Our society cannot accept this action. Parents cannot have this power over handicapped/disabled children. This is a slippery slope that we cannot add grease to. Will the next family choose to let their child die without treatment for illness because they feel that at some point they will die young anyway?
Shock – be in shock. Do not be complacent. Do not say – it is the right of the parents. Be outraged, be indignant, make it known that this is unacceptable behavior. It is child abuse. It is child neglect. It is wrong. We need to stand up and say THIS IS WRONG.
