Sunday, May 4, 2014

Lifelines & Tough Times

I've decided that writing would help me and possibly help others who are going through a tough time....I love the idea of a blog but as you can see, I am not the best at keeping up with it! Something today whispered..."writing may help" so, here I am and here I go. This entry comes before a week that I have been dreading since Kenadee passed away, Mother's Day...I choose to honor Kenadee this week by sharing the final days of her life....Pardon all of the rows of periods and errors...I am typing as my brain is thinking ;).

 

The Day Before & The Day Of...

In ways that ER visit/hospital admit seemed just like any other & in ways it was very different. We'd known for a while..or maybe had this feeling..that Kenadee was declining in a way that we had not seen before. The hospice nurse had came out just a few more times that week or maybe it was Kenadee's breathing was just a little bit worse than normal. I didn't really want to share this "feeling" with anyone because what if this was just another one of Kenadee-is-not-doing-well times that I felt like the last 4 years of my life had been composed of? We were in the er, where they did x-rays of her lungs (a normal thing with us and the ER), and we couldn't getting her breathing under control. Think of how fast you breathe after you've ran a long ways (wait...I've never done that) or exercised (that sounds better). We were admitted and the pediatrician (not Kenadee's primary but they all knew us very well) came to talk to us. We looked at the x-ray together and this was the worst one that she had had yet. Her lungs were nearly full of fluid and she was only able to use a little bit of her lungs, which would explain the breathing fast and her working so hard. To look at her was literally sickening, to see someone suffering so much takes your breath away, especially when it is your own child. I had always felt "sorry" that Kenadee didn't get to do things that other kids got to but I'd never felt like she was suffering. That day was a whole new story. My baby was hurting and struggling and there was nothing that any nurse, doctor, or pastor could do. Her temperature was out of control and nothing was helping, her oxygen was up to nearly 6 times her normal amount. This time was different, this time was worse. The attending pediatrician called Kenadee's primary doctor and he came to see her and talk to us. He told us he thought it was time to take her to the hospice house. Dennis and I didn't want to go there, Mercy was our home...where it all began...where we had spent tons of nights...where our family was...Little did we know, God already had it all taken care of. We wanted to do what her doctors thought was best so, we agreed to take her. Within 20 minutes of that agreement, Kenadee was gone. Hospice was concerned that she wasn't stable enough to be transported....in other words, God was holding our hands.  At that point, it was almost hard for me to be in the room with her because I couldn't stand to watch her suffer...it was indescribable. I walked into the room and immediately fell to my knees, screaming, "she's gone, she's gone." I felt in my heart that this was it....Somehow, doctors and nurses lifted me to the bed and put Kenadee in my arms. I had tried this before but her temperature 105 and holding her just made her more uncomfortable. We were surrounded by family and doctors/nurses that were family to us. Sometimes, I wonder if I am thankful that I was holding her when she took her last breath but other times....I hate that that is what I see and hear when I close my eyes at night.

I didn't grow up in church, there is so much that I don't get. One thing that I know is true is that God is real and He is with us when we need Him most. Right before Kenadee passed away, I had this feeling run through my body...like I had hit my funny bone & that my entire body was a funny bone....like getting the chills but totally different...a feeling that I've never had before, one that I hope to never have again. All of the sudden, the room filled with more people and I am not even sure how they knew. We wanted to take Kenadee where she would be going next (I don't like to say the words) but we had to ride with a coroner (some legal stuff or ?). Our pastor and neurologist helped us carry Kenadee outside....it felt like God was carrying us...I now understood what it meant to "feel God's love and presence." Our pastor was nearly carrying Dennis as he carried Kenadee...this was God literally carrying us in the hardest moments.

Today at church, our pastor talked about lifelines & tough moments. He told Kenadee's story, which made my heart stop because I love for her story to be told, and he talked about the church. I am convinced, far more than ever before, that God is real and that His love for us is unstoppable. Our pastor was with us as we carried our angel and left her at a scary place, he was with us making plans that no parent should ever have to, & he is still with us. I felt like it was God in the flesh. As this Mother's Day approaches, maybe you could be a lifeline for another mom that needs you.. I hope to be someones lifeline someday & help them through lifes toughest moments. One day at a time and one foot in front of the other....

Sunday, January 20, 2013

Such a slacker!!

Each time I post an update, please share Kenadee's story by updating your social networks, talking to friends & coworkers. Let's get the word out about Mitochondrial disease! Let's help find a cure so that no more mommies, daddies, & Kenadees have to be affected!

Hello Friends! My momma is being such a slacker and hasn't updated my blog in a while ;). I had an awesome Christmas and I went on my Make-A-Wish trip. My mommy & daddy had wanted to take me to Disney World but my doctors decided that was too far for me to travel. So, we went to the Great Wolf Lodge in Kansas City. It was so fun and I got treated like a princess! I am updating my bucket list today. Look at all the things that I've checked off!




                                                                         My Bucket List...

Ride in a convertible and feel the wind in my hair
Blow bubbles with mommy and daddy
Get a tattoo
See my daddy fish with KVD..he watches him all day on t.v. while he's home with me
Go to an aquarium
Go to the zoo & feed the animals
                                                              Have someone famous sing a song for me
 Play with Playdoh
Go bowling
Eat ice cream
Go to the movies in my pajamas
Get a mani-pedi
Sit by the pool and read trash magazines
Attend a birthday party
Go on a boat
Paint a picture for mommy & daddy
Feel the sand in my toes
Get a massage
Have as many birthday parties as people want to have with me
Play Hide & Seek
Lose my first tooth and get a present from the tooth fairy
Have a tea party
Sleep with mommy & daddy because there is a boogyman in my closet
Build a sandcastle
Go down a slide
Be a flower girl in a wedding
Ride in a Ferris wheel
Play in a sports game
Go to a sporting event
Ride a horse
Teach the world about Mito disease
Help find a cure so kids like me can use their muscles to walk, talk, hug their loved ones, and live a long lasting healthy life
Be on TV
Be in a beauty pageant
Be on the Ellen Show - maybe she can help spread the word
Meet Oprah - maybe she can help spread the word
Have 1,000 followers on my blog
Have a song recorded that was written about me
Learn to write my name
Date night with daddy
Date night with mommy
Overcome my illness
Get a package in the mail from a friend
Meet a celebrity
Listen to the ocean
See a dolphin
Make a snow-angel
Catch snowflakes on my tongue
Have a first crush
Have a first kiss
Write my name is wet cement
Have a man get me flowers
Blow an eyelash & make a wish
Meet my aunt Sara and uncle Chris’ baby
Put a smile on a stranger’s face and a thought in their mind
Play in the rain
Get my first haircut & style
Go to Disney World
Become a Girl Scout
Make a wish on a dandelion
Hold a kitten, name a kitten, listen to a kitten’s purr
Go to the Macy’s Thanksgiving parade
Listen to a wind chime
Kiss someone on New Years
Pet a real, live bunny
 


Tuesday, November 6, 2012

Pretty Princess!

Dear Friends!
    My mommy is making herself do a better job of updating my blog! Last Saturday, I was in a beauty pageant. It was a pageant just for kids with special needs just like me. I had so much fun & of course...looked gorgeous! I was also on tv!If you want to see me on the news, click on this link!    http://nwahomepage.com/fulltext?nxd_id=378772

My mommy is also updating my bucket list! I am crossing lots of things of my list!
Me, mommy, & daddy right after the pageant!

Me & daddy


Me & my poppa

Me, my poppa, &  my nana!

Me & my mommy.

GO TEAM KENADEE!!

I got my hair & makeup/ hair done. As you can see, I wasn't too excited about the hair part.
Sleepy Princess!



                                           My Bucket List...

Ride in a convertible and feel the wind in my hair
Blow bubbles with mommy and daddy
Get a tattoo
See my daddy fish with KVD..he watches him all day on t.v. while he's home with me
Go to an aquarium
Go to the zoo & feed the animals
Play with Playdoh
Go bowling
Eat ice cream
Go to the movies in my pajamas
Get a mani-pedi
Sit by the pool and read trash magazines
Attend a birthday party
Go on a boat
Paint a picture for mommy & daddy
Feel the sand in my toes
Get a massage
Have as many birthday parties as people want to have with me
Play Hide & Seek
Lose my first tooth and get a present from the tooth fairy
Have a tea party
Sleep with mommy & daddy because there is a boogyman in my closet
Build a sandcastle
Go down a slide
Be a flower girl in a wedding
Ride in a Ferris wheel
Play in a sports game
Go to a sporting event
Ride a horse
Teach the world about Mito disease
Help find a cure so kids like me can use their muscles to walk, talk, hug their loved ones, and live a long lasting healthy life
Be on TV
Be on the Ellen Show - maybe she can help spread the word
Meet Oprah or Ellen - maybe they can help spread the word
Have 1,000 followers on my blog
Have a song recorded that was written about me
Learn to write my name
Date night with daddy
Date night with mommy
Overcome my illness
Get a package in the mail from a friend
Meet a celebrity
Listen to the ocean
See a dolphin
Make a snow-angel
Catch snowflakes on my tongue
Have a first crush
Have a first kiss
Write my name is wet cement
Have a man get me flowers
Blow an eyelash & make a wish
Meet my aunt Sara and uncle Chris’ baby
Put a smile on a stranger’s face and a thought in their mind
Play in the rain
Get my first haircut & style
Go to Disney World
Become a Girl Scout
Make a wish on a dandelion
Hold a kitten, name a kitten, listen to a kitten’s purr
Go to the Macy’s Thanksgiving parade
Listen to a wind chime
Kiss someone on New Years
Pet a real, live bunny
Meet Jennifer Nettles (my mommy loves her ;)

Wednesday, October 24, 2012

It has been forever!

It has been too long since my mommy last posted! Life has been kinda crazy lately. I spent almost two weeks in & out of the hospital in August. That was no fun. My doctors first thought I had pneumonia. They later learned that I had fluid in/on my lungs that just wasn't going away. My heart isn't able to get rid of the fluid that my body needs to get rid of. My mommy & daddy took me to my specialist who told them that I have 3-6 months left on this earth. My mommy and daddy aren't believing that and are not giving up hope! If there is one thing that is always for sure...it's that there is always HOPE. God can work miracles; I know that because he created me.

I am in hospice and am now taking special medicines to help me get rid of the fluid. Since, I've been out of the hospital, I've been doing great. I have a machine that keeps track of my heart and oxygen levels. It makes mommy & daddy feel better because they know if there is something wrong at night. I hate that machine because it beeps a lot!

My daddy is working a lot at night & I miss him when he's gone. He's thinking about working part time soon to help mommy with me. The winter months are the hardest on my respiratory system. I know that I have tons of prayers going up for me everyday & I couldn't be more thankful! You're never going to guess what I get to do in a couple of weeks---- I get to be in a beauty paegant! My mommy is so excited...daddy too but he's a guy and girls just get more excited about that kind of stuff.

I hope that you continue to share my story with friends & family. My goal is to raise awareness about mitochondrial disorder and how it hurts families. I wish I had more followers!

Thanks Friends--xoxoxoxo,
Kenadee Rachelle

Friday, July 13, 2012

Hair cut & gift from Minnie Mouse!

Whew! It's been a while since my mommy posted in the blog! We have been so busy this summer. Guess what--I got my hair cut! My mommy's friend-since-high-school, Jon, took very special care of me. 





Minnie Mouse heard about me and my story! She sent me a package in the mail to let me know she was thinking about me. How cool is that--Minnie is so sweet! Here is a picture of what I got !
 

Monday, June 25, 2012

Photo Book

Click here to view this photo book larger

The new way to make a photo album: photo books by Shutterfly.

Tuesday, June 5, 2012

MommY, Daddy, & tattoos!





This is my mommy & daddy. They were so thankful that they were able to take me to the ocean! 

Things marked off my list in Florida!
Get a tattoo
Go to an aquarium
Eat ice cream
 Sleep with mommy & daddy because there is a boogyman in my closet
 Listen to the ocean
See a dolphin





While we were in Florida, they got to parasail! They said it was so much fun! Daddy took a video of the entire thing but we'll post that later, once we figure out how! The tried three different times before the weather cooperated and it wasn't too windy. 800 feet in the air is crazy-high!




I had "getting a tattoo" on my bucket list. My mommy wants a real one, but she's a big chicken so we got the fake kind! We love dolphins so this worked perfectly! Papa texted mommy to make sure they weren't real--silly poppa!





Each time I post an update, please share Kenadee's story by updating your social networks, talking to friends & coworkers. Let's get the word out about Mitochondrial disease! Let's help find a cure so that no more mommies, daddies, & Kenadees have to be affected!