ABC news covers NF

http://abcnews.go.com/Health/MindMoodNews/Story?id=7441719&page=1

Maked a trip to the emergancy room/urgent care

In the middle of a movie and winding down for bed, Koda goes to the bathroom. I clean up some dishes from the Chinese food we had; and I hear this blood curdling scream............I already knew what had happened. This time was definitely worse; as he held onto himself w/ a Chinese death grip. He had slammed his you know what with the toilet lid.

I didn't know something could swell up and get a big blood blister so fast. Of course, I'm thinking I need to call the nurse's line to see what was the best thing to do. They have us put ice on it; and he put it on gladly, then a dose of ibuprofen for the pain. They also said since there was a blood blister that it would need to be popped, and to bring him in.

Of course we are on our way, he stops crying and goes into his imaginary world mode; talking about trains, dinosaurs, and whatever else was on the brain. We arrive, and he's playing w/ toys, crawling into and out of a wagon........Daddy, cringed at the pain that he thought his son should be feeling when doing that. I really think Daddy was hurting worse than what Koda did.

Time to get vitals and stuff; Koda has to go to the bathroom again. We thought oh here we go........he is gonna scream. Daddy brings him back laughing; and says the blood blister had popped itself. He went to the bathroom just fine. Oh great, I am not about to wait another 2 hours for a doctor to see him and tell us to go home; and call someone if it gets worse. So, we decided to sign a release of liability to the hospital and leave. I only had a few hours till morning and I could take him back if needed. A doctor's office visit is a lot cheaper than a hospital emergancy room bill, lol.

Koda is fine and has no problems.........back to normal after making a trip to the emergancy room.

April showers brings May flowers

I'm so glad to see the weather finally agreeing with my prayers. Thinking about great friends, relationships, family, bike & car shows, camping, smoking/grilling awesome meat, concerts, sunrises, days in the park w/ Koda, sunsets, and nights under the stars. Life is good, and nomatter what direction we are going; thankful to be alive and enjoying the life given to me. I appreciate all the support of family and friends. You all are fabulous! May the frost not keep you from blooming into the beautiful person that you were created to be.

Where are we going?

My baby girl decides she wants to move to her dads. Of course, her sister and dad are there. She has a good step mom and additional siblings as well. I'm crushed, but I have a plan. The ol' man can get a job transfer to Springfield, then we would be a lot closer to them both. I could actually drive down and see them even for a couple hours. We want to be in the country anyway, especially now that we have this wild preschool boy. I do miss the peace that is found when the wind blows thru your hair in the country; without the smog making it greasy. Perfect plan, right.

My hubby is a wanted man I guess and work doesn't want him to go anywhere. We believe there might even be some behind the scenes talk going on to keep him from being able to transfer. I don't have good things to say about this, but I will look at it this way. I'm glad he is an asset; maybe he won't be another one looking at a layoff.

Of course, we thought about him getting another job down there if the transfer doesn't happen. We can't do that though because of Koda's condition. We have to keep the insurance that we have for as long as possible, so there is no precondition exemptions. Thank God he likes his job, huh? I've made emotional decisions before and they always seem to bite me later. I will hate it if we don't get to go, but at the same time; I don't want to go if something bad will happen after getting there. I want to move to be closer to the girls and fulfill my desires for nature.

We'll see, the bosses are meeting in Springfield the end of this month. They are supposed to discuss this transfer then. I just have a problem with patience. I want to be doing something now because we are staying with family. I want to know where we are going, so we can look for a place to live. If we stay here, I'm a little overwhelmed with where we should live. We need to think of Koda's education as he will be starting preschool this year, and on to Kindergarten next. We are thinking we need to move across state lines as there are more options that meet our budget as far as housing.

So until something breaks, I don't know where we are going.

Neurofibromatosis has got to go!

http://www.caringbridge.org/visit/koda
http://www.nfinc.org/kansas.shtml

You will be hearing from me soon on helping us form Team Koda for the walk in KC on June 13th.

Anger, Realization, Forgiveness

Who are you? You are not the same as you were before. My blood boils; I don’t understand where you went. It’s a roller coaster of emotions and thoughts that keep me from sleeping. I didn’t ask to have you in my life but for whatever reason; God thought we should be together. So it is! I knew things were changing along the way, but it’s became a realization that we will never be what we once were. I’m so sad. I’m glad that I got to know you as you were once before. You were the person I could always count on, the one always there for me no matter what, the one that helped me along the way, and listened when no one else would. I thought of us as best friends, and always forgave you when I thought I was done wrong. I’ve done you wrong too, and apologized for everything; thinking you had given that forgiveness back. I guess I was wrong. You have harbored resentment and bitterness I guess. You have held grudges all these years. I know you are saddened to be without your loved one, but is it an excuse to treat us all bad? My children have seen the worst in you, and I hate it that they had to see, hear, and live with it. No wonder they and the others don’t want to be around.

I guess you just thought I should know about it, so you put it in a pretty photo album to give as a gift. It was a stab to the heart that made me realize that you are not the person that I thought you were. You are always expecting something back. That is not what I learned from the Sunday school you sent me to. Oh yeah, and why didn’t you go? The Bible was big in our lives, and I thought you were one trying to abide. There were preachers within our means, and faithful church going Christians. Hypocrite is now all I can say now, but we all are that at some time. Is that what you desired to do when you took me in as your own, make sure I would forever owe you? I have been disowned before, but our relationship always made that disappear out of my mind; until now. Where did I go wrong; no, I believe you have just been in and out of your mind. You look at me with complete hatred sometimes; will I ever see the love in your eyes?
I just want to scream angry words at you and let you know how I feel. See though, you remember everything bad or how much people owe you, but you forget the seeds of good deeds that many have left in your life. I can only hope never to become like you, as you were once a hero in my eyes! You deal with pain like no one I have ever seen. Now you would rather buy unnecessary plants instead of the meds to make you heal. I see now that much of that is just a way to get attention or at least a label “see what I have done”. Are you doing these things so you can be with your loved one, or so the neighbors will see what you are capable of? Don’t think I don’t notice when you grab your chest; I know you are in pain. You once took my help, and now you portray you don’t want me around. You are always ready to outdo someone no matter the state that it puts you in; if you would only realize that you don’t have to do anything; my love for you cannot be undone.

I’ve lived with you now since February 1st, and it’s been like I imagine Hell. I thought I could be of some help here, but I was wrong. I have treated my son like I would never imagine trying to keep you happy; but no more! He is almost 4, and I will make sure that he never hears, lives, or sees even a tidbit of the new you. I’m getting out of here, before I explode. I want to say “you will never see me again”, but I know that I cannot stay away from you for long. Division has happened because of you, and some are lying to you just to keep the peace. Some are putting up with you just because “they should”; it’s the right thing to do.

You are depressed and have been for a long time. I wish you would have went and seen someone to get some help. I miss him too, and her even more; but it’s not an excuse to make everyone miserable just because you can’t find contentment within yourself. You were supposed to enjoy this time in your life with great grandchildren almost old enough to have their own. I’ve cried many tears over you, and I’m sure I’m not done. I love you with all my heart, but I do wish I could figure out where you have gone. I will not judge you lest I be judged, the good book says. Some say its ol’ age, dementia, or Alzheimer’s. I wonder if it is any or if this is the real you? Who are you? You are not the same person that helped raise me, but I forgive you because you are my Grandma.

A beautiful poem about a front porch in my past!

"That Old Front Porch"......written by Tamie Jo Myers-Stockdale

Saturday, March 14, 2009 at 4:34pm

It was in an L-shape, twelve feet long, ten feet wide, and ten feet high. It was made from solid oak lumber. The steps were made of concrete, poured with great care and accuracy. The walls were painted white, and the floors were painted gray. There were two doors; one opened into a room which was never quite, and the other opened into a room of silence. The lattice was unique, each board spaced precisely. These are a few of the things which made up my favorite place, my Grandma's front porch.Grandma's front porch was a place for hello's and goodbye's, laughter and tears, teaching and learning, work and rest and play. It was a place where PaPa taught his granddaughters to whittle, and Grandma taught her grandsons to cuddle. Many quilts were sewn, and many hearts were mended on that old front porch. Music was made by fiddlers with bows and songs were sung with the whip-poor-wills. Each grandchild and great-grandchild had a turn riding the rocking horse which was kept on that front porch corral.Every child heard several times, "Don't slam that door!" or "Keep that door shut! You're letting flies in!". Many hours were spent listening to stories about the "olden days". PaPa would tell us about chasing cows through the wilderness, about working on the government crews, and about that old mare which was born the same year as I. Even more hours were spent listening to Grandma's complaints about that old man, PaPa, and all their aches and pains. That old front porch was home to more flowers than florists keep in stock. Each flower was carefully watered and protected from the elements. Just as Grandma protected her flowers from the heat and cold, so, too, did she protect her grand babies from the harsh rays of the sun. She would hang bed sheets across the porch to keep the hot sun from scorching her precious little Angel Wings and Wandering Jews.Watermelon seeds and sticky drops of lemonade could be found on the floor in the summertime. Sometimes buttermilk would spill when butter was being churned, or homemade icecream would drip from the paddles onto that old floor. Several drops of blood soaked into the floor boards as each child and grandchild and great-grandchild came to the first-aid station which was always open on the front porch. Nevertheless, Grandma's porch was always spotless because, as Grandma would say, "My front porch is the first place a stranger will see when coming into my house." Grandma's house was her castle, and the front porch was a gateway into her kingdom. Many years have gone by since the front porch was new. The steps are starting to crumble. The paint is dull and peeling. The lattice work is all gone. Grandma and PaPa have a new front porch. The steps are made of gold and the chairs are lined with soft, white satin. There are no more aches and pains for the two of them to bear. As for their children, grandchildren, and great-grandchildren, we will always have photographs in our hearts and minds of PaPa leaned back in his woven-bottom chair and Grandma standing beside him with her apron waving in the breeze.

Written by Tamie Jo Myers-Stockdale

An evening in waiting finally comes true~Smokehouse eXtreme!

As we sit here watching Thomas the Train again for the 1000th time, I am in amazement of how this business really came together so smoothly. The blueprints were drawn up late last night on a blank piece of paper. The blueprints of the truck that will be a traveling smoker. I sat totally shocked at how the hands of a man that I've never seen draw before; laid out every piece and line with great detail. From the type of paint and it's scheme to the flickering fire headlights. I can't of course give all the details! We have our licenses, and are working on getting them for Missouri so it will be a smooth transfer. We have an order to do a graduation in May, and this will be our first big event under the business name: Smokehouse eXtreme! We have done many car shows with tips as our pay, and some volunteered church events......which we absolutely loved doing!

We have our secret rub that totally is ours to own! That is exciting in it's self because it has one major ingrediant that nobody would ever guess.......and it's the secret to the awesome tasting meat we produce. This business was just something joked about for years, and now it's here just screaming to grow! As it grows, I will be blogging!

I am so proud of my husband, the one that everyone really thought would never do anything........he has awesome potential, dreams, and now a way to express his creative imagination! I'm so lucky to have him all to myself. Selfish, most indeed!

Jesse's Poem : A boy that has NF like our baby Koda

By Jill Markland

Jesse Markland is active, sweet, and smart
His eyes are deep brown
They melt your heart

Playful and mischievous is definitely his style
He gets out of trouble
With his beautiful smile

As he turned two I could take it no more
At a touch of his head
In pain, he'd drop to the floor

It wasn't mistaken and it wasn't mild
It was unexplainable misery
To much for my child

From one to ten in measuring the pain
He was a forty-five
Like he'd been hit by a train

We needed to know, what could it be
We learned and were horrified
He'd never be free

No treatment No cure are the words that burn
Our faith in our God
Is where we would turn

Jesse has been diagnosed with a horrible disease
We watched him sleep quietly
As we wept, No, dear God, please

Nerves of his head and skin cause the pain
He has tumors all over his body
And one in his brain

He has five separate doctors to see
He knows tests, needles, and drugs
He's only just turned three

What he has is NF1
I've mentioned his challenges now
There could still be more to come

NF1 is progressive and unknown
We won't see more coming
Even when he's grown

We've been sad but we have to be strong
To let this beat us
Would be so wrong

It's been a heartbreaking journey for a
husband and a wife
He is our baby
And we're fighting for his life

We raise funds for the research to find the cure
We won't just sit and take it
And that is for sure

Each night is the same that I pray
A treatment will be found
There will come a day

First Blog

Ok, here is my first blog or at least some words written down. I'm doing this to hopefully link all my sites together, so I can build a world of networking, friend updates, and just jotting down what is on my mind. I so love my husband!