Everyone has an opinion about my sister. They think they know everything there is to know about my family and the way we think and the choices we make. They know everything about our life and our home and our friends. They think their opinion matters to us. They think that they have a right to voice their opinion about whether or not we kill Kenzie.
“You are not entitled to your opinion. You are entitled to your informed opinion. No one is entitled to be ignorant.”
Some people tell me I need to be more patient because people just don't know, I think that if they wanted to know, they could. We have an open door policy at our house, everyone has an invitation at anytime. We haven't ever told anyone they couldn't come visit. Maybe if they actually came up to see what her life is like then they can form an opinion instead of assuming stupid shit. It's time to separate the fact from the fiction.
FICTION:
Kenzie talks.
She is on life support.
She is brain dead.
She has no quality of life.
She is paralyzed.
She is a vegetable.
She is something to be afraid of.
She doesn't know what's going on around her.
FACTS:
Kenzie breathes on her own. She is not hooked up to a machine that keeps her alive.
She watches the Price is Right, every day.
She can see.
She sleeps in til 10.
She can communicate with body language.
She lets us know when she doesn't like something.
She recognizes voices.
She pretends to sleep when we have company.
She is a brat sometimes.
She has a feeding tube.
She has a trach.
She turns her head towards things she likes.
She turns her head away from things she doesn't.
She cannot regulate her body temp.
She has one eye that's always open. (She has perfect vision in that eye, her left.)
She has one eye that's usually closed. (She is blind in that eye, her right.)
She cannot talk.
She cannot eat or take pills orally.
She eats Jevity.
She throws fits.
She smiles.
She has two nurses, a night nurse and a day nurse and we love them. They take excellent care of her.
She is not a baby. She is a 17 year old girl.
She likes when people swear. (seriously, she opens her eyes and looks at you.)
She is not brain dead.
TIPS FOR PEOPLE WITHOUT SOCIAL SKILLS:
Do not stare at her when you see her in public.
Talk to her when you see her but...
Don't touch her, you wouldn't want everyone you know touching on you at the grocery store.
You can ask how she is, but we will probably say "Fine" or "Good."
You don't have to make excuses when you haven't been up to see her. Just stay quiet.
Don't tell anyone in my family that we should pull the plug.
I don't think this has ever been made clear but when the doctor gave us the option of putting Kenzie on hospice it wasn't because he didn't know she had brain activity or that her heart wasn't beating, there was no option to take off the ventilator because there wasn't one. He wanted us to just stop feeding her. Would you do that to your child? "Oh man, I'm so glad you survived that car accident and I'm happy you're on the road to recovery... but wait? What? You can't feed yourself? Oh okay, well then I guess we are going to starve you to death, because feeding you every day is a huge inconvenience and everyone that can't feed themselves dies, like babies and old people."
You wouldn't say that? Didn't think so. Her life isn't yours to decide. So don't tell us what you would of done. We don't give a shit. We made our choice and Kenzie is a living, breathing miracle and she brings us joy and happiness every single day. How many people can say they have someone that breathes hope into their home every day? We can.
