Devastated

It's Valentine's Day and I'm excited. Starr always goes out of her way to make me feel special and spoil me senseless.

But my heart is heavy. I miss Kenzie horribly. I miss every little thing that she used to do. Her dance moves, her laugh, her loud voice. I've been pretty good for a few months and I miss her every single minute of every day but today the weight seems so heavy that it's hard to breathe.

Today, the world feels empty and hopeless without her personality.

Forget Tiny Steps, Kenzie Shoots for the Moon

My badass little sister now goes to school on Mondays and Wednesdays! How awesome is that?! This blog will be all things Kenzie.

Quote from my rad father:

"We are glad she finally made it back to school. We think it will do her alot of good with all the old familiar sights and sounds of the class rooms and the hall ways. You know when we were in the hospital and the Extended Care Center we had nurses, cna's and other people tell us the same thing about alot of people wouldn't do what we are doing. I think it's probably true but I think you would be surprised at seeing your child laying there all broken and she still has the fight and the will to live you don't want to give up on that and we never even once thought about on giving up on her. You learn alot about yourself in a situation like this."

Quotes from my awesome cousin Katie:

"I read every day of people's thankfulness and how awful life can be. The last few months have been a test on me emotionally and physically. But every day I am thankful for all the love, prayers, and help from strangers, family, friends, medical staff and everyone else who has helped my family over the last year and a half. Today my lovely cousin Kenzie got to attend school again, something I didn't think was possible a year ago. It makes me greatly thankful for the joys of being able to live my life even if I have bumps in the road."My family is amazing.Kenzie wears a Passy-Muir during the day sometimes. Click here for more information on that. But there is a video on my Facebook where she is wearing it and you can hear her voice and it sounds exactly like it did before the accident. I tried to put it here but it wouldn't work.

Kenzie looked so much like her old self last night!

 Kenzie doing laps in gym class!

We are only 3 days into this week and she's done so many cool things. We have a lot to be thankful for tomorrow and every other day of the year.

Madness

“Call it a clan, call it a network, call it a tribe, call it a family. Whatever you call it, whoever you are, you need one.” -Jane Howard

Our house holds multiple generations, tons of furry creatures and a whole lot of love. My parents were so lucky to find a house that meets all of our needs. Starr and I live in the above ground basement apartment, we have our kitchen, living room, bathroom, laundry room and basement. Everyone else lives upstairs.

Our apartment - Starr, Stitch, Walt, Nala, Kanga and I.

Upstairs - Dad, Mom, Kenzie, Papa, a few dogs and a couple cats. Plus they have a day nurse there 5 days a week and a night nurse 4 nights a week.

Our home is busy, loud, wild, crazy and fun. There is always someone home so we don't have to worry about coming home to a dark, quiet house. We never know what to expect from one day to the next, there is always something going on or some gossip to get in on. My favorite things about living together: being able to go shopping in Mom and Dad's kitchen, not having to drive or wear pants to go see them, and getting to see Kenzie every single day! 

Next topic: My babies! We don't have human babies, (kittens and puppies are way cuter and don't need diapers) so we have puppies and kittens! My poor Facebook friends are probably so tired of looking at them. They all have Disney names, because I like that. You seriously might overdose on cuteness if you dare visit.

 We have our golden retriever, Stitch, who is a giant now. He is almost 7 months old. He's still as perfect as ever, but don't ask his Grandma or Grandpa. He has turned into the best dog. He is calm, cuddly, loving and gentle. 

Then there's Nala! She's a white Siamese and we don't really know how old she is but somewhere between 6-10 months. She adopted us and we couldn't help but open our home to her. She is sweet, quiet and is currently teaching Walt how to be a real cat.

Walt, short for Walt Disney. He is a kitten we got back in August, his momma was killed when he was 3 weeks old so we had to bottle feed him. He has the biggest personality of the four, he is a wild one, independent and has a mind of his own. He is scared of everything and deep down a momma's boy. (Even though he pretends not to be.)

Kanga! She is our newest and last addition. She is six and a half week old Great Pyrnees/Shepard/mutt. We've only had her two days now but she already feels like part of the family. She is fearless and friendly. Stitch is so good to her and Nala wants to be her mom. Nala even lets Kanga chew on her tail! 

 View from Kenzie's room

 Kanga and I

 The Fab Four

 Cuddling on Moms' bed

 Walt and Starr

 Kanga

 Walter the lush

 Seriously, weirdest cat ever

 Stitch as a baby and as a big boy. He loves wearing clothes.

 Love at first sight

 Stitch got a big boy bed!

 This took me twice as long to type because Walt needed attention, so I typed it one handed.

Bonus points if you can name the Disney movies we stole names from!

All About Kenzie

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 hear.
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. 

Here We Go Again...

Kenzie was hospitalized after contracting a severe UTI. After turning purple, getting 104 fever and freaking out both the night nurse and my mom, Kenzie got to go on a trip to the E.R. Because of the shunt in her head they want to keep her for a few days because it's a possibility that her body's natural response will attack the shunt that's in her head/stomach. Of course she'll have awesome company and anyone is invited to stop up, say hi or be mean to her!

I swear we've spent so much time in hospitals in the last year and a half that we could write an etiquette book. Here are a few tips, tricks and rules that I've learned:

Ask questions, its better to look dumb than to feel helpless and confused.
Use the nurses and CNA's to your advantage, that's what they are for. If you need something, ask for it.
If you're gonna get hurt/sick, go to Great Falls, the Lewistown hospital has Facebook blocked, ridiculous.
Don't be afraid to question doctors decision's, they can only make decisions with what they know.
Hospital beds can sleep two.
Friends are everywhere.
Caffeine can be your best friend, or your worst enemy.
Buy expensive Kleenex, your nose is worth it.
Doctors and nurses work really hard, be nice.
Write everything down, survival mode doesn't include long-term memory.
Don't forget to eat, it puts everyone in a better mood.
Laugh and be inappropriate, serious-ness will kill you.
Drink water, it does a body good.
and
Waiting rooms are an awesome place to play pooch or pregnant.

Annnnd... We're back!

It's been a while and a lot has changed. We are settled in to the apartment, Stitch loves having his moms home and we got a brand new Kitten! His name is Walt and his momma got run over so we've been bottle feeding him. So between hanging out with both families, Stitch, Walt and new jobs, it's hard to find time to write.

We've gone to a few Writer's Group meetings and I love it. At first it was a little bit scary and it made get get out of my comfort zone, but I love it and I'm excited for the next meeting!

We are going to host a book exchange at our place next Saturday, if you're interested, let me know. Hopefully I'll something better out early this week!

Day Maker

The other day I was driving to work, I wasn't paying attention and sat a green light a little too long. I had the music up and the windows down, just jammin'. When I hit the next red light a lady in a SUV was waving at me and trying to get my attention, my first thought was "Oh shit." I was so surprised when she asked me who Kenzie was. (My back window has "Pray for Kenzie" written across it.) I explained as quickly as I could, yelling over traffic, and she told me she'd pray for her. Of course as as soon as she drove away I started crying. (I could have been over hydrated.) Sometimes it's the little things that turn an entire day around.