I can only hope you find Truth for yourself through my pilgrimage. This site consists of the transformational stories, adventures, and stepping stones in my life. A true diary of love, heartache, accomplishments, failures, faith, hope, patience, marriage, parenting, concerns, and just life in general.
Thursday, December 17, 2009
About to die...........
Compassion for our neighbors, family, friends, and the stranger that you just cut off, ignored, laughed at, or just didn't pray for today because we're too caught up in our own issues. Everybody has them, and none of us are exempt from them. How we choose to deal with it though is the difference. I often can get caught up in my own issues and wonder "don't you understand my son may not make it thru his teenage years; there's no cure or treatment for NF". "Don't you understand, we don't have any food in the fridge and I had to go to the food pantry for the first time in my life; I need a job"............all of this only to strengthen me for what is about to come. I have been granted and allowed to be in this very family to build my faith, strength, courage and most of all love for others. I have endured and will be challenged with more; as God see's fit. A reward, compliment, promotion, or whatever you want to call it; but God must think I'm "able and good enough" to take it on.
I don't like it sometimes. It's much easier to crawl back under the covers and not face any of it. Its easy being depressed; I can excuse it, not worry about it, throw it off to the side; but then it drains all of my energy to be depressed; now it's too hard. I just want to be happy! Ok, I have a choice; it's not everyone else's job to make me happy. I need to find my happiness in another form than from the people in my life........where do you find yours? Most people really are selfish, and only care about their own lives.......really!
My eyes were opened when I saw the tent in the woods; on a sub zero degree day. A man (I'm going to call Jesus) only in a fleece jacket walks from a McDonald's dumpster across the street thru the field and into the balding trees to his now called home. A tent. How long has he had to live there? Is he warm enough? How many are there with him? How did he get to this place in his life? When's the last time he got to take a bath?What else might be wrong? Does he need a doctor? Is he starving? So many questions in the blink of my eye while I ride in my warm van that I gripe about needing to get rid of on the way back to my warm house with running water, etc. But see, Jesus was thankful; he had shelter, food, and clothing.
Does he not have any friends or family? Then I thought; if I got to a place where I didn't have a home, would I ask someone? Would I really be able to tell them? No, really would you be able? Its not a question of pride as much as it is; are there people that really care enough not to care to help take care of you until you can do it on your own again? People don't want to be bothered, or their finances tightened to really help out. Thoughts to ponder........when you think you're about to die in your circumstance..............
Ok God, what is my purpose; and why did I see this picture? That's between me and God and I do not need to share; but I ask you........when you think you are about to die in your situation; just look and behold another life; and be thankful, giving, and most of all in prayer that you can help someone out of that place that they are in or add to what they have/need. Why are we so busy that we just pass everyone by? Do unto others as you would have them do unto you!
Tuesday, December 8, 2009
Dark cloud................
Luke Wallace (Friend's 4 yr old boy w/ NF and found cancer cure in heaven )
Dave Downey ( Friend of family passed the day b4 yesterday due to blood clot to the brain while driving over to visit my uncle)
Issac Krebs (Friend's 3 yr old son found cancer cure in heaven) Feel free to visit this mom amazing journey with her son at www.caringbridge.org/visit/issackrebs
Gabe Putthoff (our Associate Pastor's 5 year old son who is facing his second round with cancer, and the issues that go along with it.) Feel free to visit his heroic story at www.caringbridge.org/visit/gabeputthoff
Darren Myers (tragic car accident last night; in trauma unit on respirator. multiple injuries, doesn't look good: my ex's nephew)
Marilyn Boyd ( my husband's aunt received the diagnosis of Carcinoid Syndrome which they have found the tumors and she is recovering from surgery then will undergo chemo for the one they couldn't get)
Betty (BJ) Rentschler (my mother-in-law has been in the hospital twice within the last 30 days with a horrible bladder infection, and other health issues and is still in the hospital as I type)
Phyllis Bancour (my cousin has been in the hospital and now is recovering from pneumonia but was also diagnosed with emphysema and interstitial lung disease.)
..........praying to find the smiles of sunshine and good news through the clouds!
Thursday, November 12, 2009
It's really funny............
Tuesday, November 10, 2009
Overloaded...........
Step-parenting; I can't say I know anything about it as I have never been one. So why would I write about such a topic.....because I'm married to one, and have relations that are one, etc. Where do they actually fit into the picture, and when do they actually get the recognition that they deserve. Are they just a piece of the puzzle to always get played or the piece left put up and never seen. They are not in the deciding factor in the final decisions of things nomatter if they are the caregiver, insurance payor, the house supplier, the meal maker, the taxi driver, and the money giver.
Are my eyes really open to the possibility that "the" step-parent can see right thru the games that might be played; manipulation, lying, butterup, deception, sneakiness? I am not just talking about my personal family but even the ones that might very well be reading this. Does it really matter for the sp to say anything at all about a subject, when the actual parent always is blinded, gives in, and thinks its all ok? Why even ask them if we're only going to make the final choice in the matter and it be our opinion that is the solution.
I am forever not agreeing with my husband on the rules, discipline, etc for my daughter that lives with us....because I've already lost one daughter back to her dad. That's my thought; I didn't lose her nor did my husband have anything to do with that move. I have to blame somebody though, right? It can't be my fault.......of course, it could be that there was a teenager that thought grass was greener on the other side as well. It's possible it was just all part of the game........and then it could be that well; I can't go into the depths of someone else's choices. Ok no blaming anyone here, just a realization moment for me............this about me realizing that my husband really is pushed back. If some life or death situation was to happen to the kids; the sp wouldn't be calling any final shots in the norm. As an wife that is very much in love with my husband; I really could've pushed him away by not sitting down and finding out the very reason each of us feel the way we do about such decisions that need to be made. Can we agree to take the time to listen to the logic then proclaim the answer with love?
He doesn't know I have even been enlightened today, about his position in our family. I don't want him left out, and I don't want to push him out eventually either. I also don't want him to punish incorrectly; uhhmmm let's see I guess I'm the judge and I know exactly the perfect punishment is for every situation. NOPE! I really need to listen; I guess sometimes his anger overrides my thinking that he can make a "loving, impactful action/decision". He can't do it right cuz he's mad, He can't do it right cuz he's not been a parent as long, He can't .........do anything if I don't let him share in all these experiences that parents/a marriage should share. Part of that is making mistakes, and standing by each other thru it all. My gosh, what have I done? I understand why he says "what's the point" now...........I know duh, right? Light-bulb should have went off then; but it didn't. Is it possible this is why so many marriages that include step kids don't work?
I know usually when there is step kids there is sometimes a missing biological parent missing from the whole picture do to drugs, alcohol, absenteeism, etc...........but I'm talking about where all parents are involved including step-parents on each side. Kids know right from wrong, and how to get their way; am I missing it by wearing rose colored glasses? I don't want to be too hard, and I don't want them to be unhappy cuz they might just leave............well EYES OPENED along with HEART! I am not playing anymore, my marriage has to last a lifetime; I am partners with my man by God's Grace. I will have this very talk with him this evening; and apologize to him and the world! I have been controlling, unsupportive, and most of all not the spouse anybody would want to step-parent with. It falls down to fear..........I feared something, so I tried to control it myself. I no longer fear.............if they happen to want to leave; grass may be greener, but if its not then that was their decision. Old enough to make choices then old enough to enjoy the consequences. Let's Enjoy Life .............Overloaded!
Monday, November 9, 2009
The Son Painting
Saturday, November 7, 2009
Laughing............
www.marilynssunflowers.blogspot.com
Friday, November 6, 2009
Difference........
That's exactly what Dr. Tim is doing from Liberty, MO. He doesn't know us or Koda or even anyone with NF apparently, but is willing to endure the Antarctica Marathon to raise money for a cure for NF. The proceeds going to The Children's Tumor Foundation. Uhmmm time for self reflection I would think; what difference will we make today? You might just find your purpose in life..............
Thursday, November 5, 2009
Unsure...........
A new friend to make, just when you need a real one the most. Would I want my son to pay the price to bring a family back together; my selfishness says no.......but we all know he was only given to me for me to do my job; raise him to know the Lord on a personal level. But see, God did give up his only son to save all of us. See He was selfish in the fact He wanted us all. For those with no family, any sacrifice would be willing to enjoy just a moment in a family spirited atmosphere. There is a purpose behind the pain; though it was not caused it is still allowed so that the pain will give purpose to the much needed growth in each of us. I have to step back and wonder myself why I have become so close to this family member lately........why have our paths crossed; why do we need each other, and what is about to happen? I know I shouldn't but I still want an answer to why. She is not my blood, but she is becoming one of the closest people to my heart. She has had experiences, guilt, shame, victories, losses, thoughts, fights, anger, love, and most of determination. Where she gets it; who knows............she probably is in awe of herself. She wouldn't tell you that though. May we all step back and look a little deeper at the people God allows us to have in our lives. All have a purpose; to a beautiful tapestry that will be finished but it includes our pain. It's all part of it. I must say that I hope to find many years of connected heart strings, and get to share the present of life and victory with her. I know when we look each other in the eyes from now on; there is a deeper sense of strength, passion, serenity, love, wisdom, life, sunshine, memories, mountains of endurance, and most of all true friendship..........to the end. Why I'm writing the words I am, again I do not know. I type what my heart is delivering at the time. Sometimes it makes me cry.......how my feeling turn into clicks. My heart is my writing, and my writing is your gift from me for the day. Another day is always a gift to be thankful for; so I'm glad I can share it with you. I'm still unsure..............
Wednesday, September 23, 2009
Offline for a while........
Tuesday, September 22, 2009
Reunite................
I met some wonderful souls.........the twins are about the best! We really enjoyed our moment of sick humor with the tens machine; Devon you will forever be a legendary picture of a jerk :oP. Rachel's laugh and jump at a mouse is unforgettable. Tho this blog means nothing really to the public of readers..........it's a written picture of the history. Not one that our memories will always hold on to, but now it's forever written to review when the memories fade. Memories do fade though we all treasure holding on to them, but I have found that a written picture can bring a tear 50 years later that no memory can. Thank you all for allowing me to be part of your family.
Our trip down gave me a sky view picture of peace as three different airplanes crossed paths and left me a visual of The Cross! I knew our trip would be that of Godly nature..........and I have to tell you that the serenity of the late night stars while I'm embracing the jets of hot water massaging my body in the darkness of the night was amazing! Thank you Marilyn for such a beautiful experience.
Every family has skeletons in the closet or secrets that have never been told............we all have them; they have hurt, confused, damaged, distorted, burdened, weighed heavy upon each of us all in different ways. When God is in the picture though; such darkness cannot be held that way.........He always brings it to light whether we like it or not. I like it when such darkness is exposed, it's then that Jesus' blood can wash it all white and reunions of forgiveness can start. Hearts will continue to need mended, but maybe the seeds that were planted ( I pray) will grow the threads needed to grab the needle to begin the sewing........color doesn't matter, and the needle can hurt; but the stitching is a beautiful piece of work when completed by God's Hand.
as we all left the park that day.........a pack to reunite again soon began with a date of June 12, 2010 which means the sewing is healing by determination to build this family instead of letting it deteriorate by the eating of moths in a hidden closet...................Rebuild, Rejuvenate, Relax, Reason, Repent, Remember the reunion of Typer purpose!
Thursday, September 17, 2009
Why am I being stopped...........
Tuesday, September 8, 2009
ICU.........
Friday, September 4, 2009
Not as planned..............
Thursday, September 3, 2009
Food Journal Blog
Just in a moment.............
...the microwave goes out, and Holly has to use the stove to heat something up, wow that's a new experience. .....Koda gets a fever and sounds like the croup, then ohhh he's fine but quite and still before the TV. .......that haunting voice telling me I need a cigarette and then it's gone. .......that still small voice of God is talking to me and then I'm distracted by busyness and ignore it. .......then I realize that moments are only here for that moment; to be cherished and not taken for granted. The choices we make in those moments could be life or death, could be victory or defeat, could be happiness or sorrow, could be passed or failed, could be energy or fatigue, could be gain a pound or lose one, could be heaven or hell, could be accepted or rejected, could be freedom or slavery, could be bright or gloomy, or it could be just the moment God gave to you to take, live in, and find the passion of Him. How do you choose to use your moments?
I choose me for once! There has been a time in my life with a lot of moments where I have lost the moments in life trying to please everyone else, trying to be what I thought everyone wanted me to be, trying, trying, trying only to find out that even though those moments brought me to where I am today; they were wasted moments in the sense of accomplishing what should have been. I'm like everyone else, just going through this life, wandering around aimlessly trying to find my place and purpose. I got caught up in the the running of life as most know it. Everyone running everywhere to get somewhere to only either sit and wait for the next thing, or to hurry to get to the next place so they could get back home to start it all over again. What's the point? Moments........we only have so many with our families, friends, and acquaintences on this earth and I choose not to waste mine anymore. So, I'm sharing my moments with whomever wants to listen.
I always use to say, wait a moment, in a moment, we will do it later, hold on, maybe tomorrow, can you wait, etc.......none of us have another moment to waste; take a moment to think about what is the most beneficial in your moment. Thinking sometimes can bring the best moments in life.
In this moment, I need to find a position in life that makes me some money to help my husband pay the bills necessary to live life on this earth as we know it. In this moment, I choose to enjoy watching cartoons with my son that isn't feeling so well today, he loves my time. In this moment, I am needing to do a daily food intake log.......and I think I'll build a new blog instead of hold it to myself; it just might help someone else. In this moment, I am so thankful for such an awesome husband that goes over and beyond all the time. In this moment, I am desiring to write a book........what do I do with this moment? Look and see if I can find something that will help me fulfill that desire? Do you know how I would go about doing this? See, not a wasted moment now if someone actually responds to my question. I didn't waste it as a thought. In this moment, I am sharing my life with yours. How you choose to use your moment in this.........is for you to decide.
I spent many of my moments in the bed of depression. I really couldn't get up, get out, or even see anyway out. I believe there is an evil one that likes to keep trying to tell me that I'm still there........what's the use, give up, just forget it, you can't make a difference, people are just going to laugh at you, you will never be anything, you deserve this, nobody even likes you, your husband doesn't even want to be around you, etc.....moments that I decide not to listen to anymore. I choose me! I choose life! I choose to be a positive influence in this life if nothing else to myself.
If I don't get the word out about NF here in KC, is anyone else; well that's not for me to decide, but I am using my moments. If I don't then I may be helping shorten Koda's moments; and I don't want to be helping Death. If I don't take a moment to share about Jesus, then I have wasted a moment that He gave me. That's not very good accountability with time is it. My hope is in Him, and I have found these moments to be from Him; so I want to say that because of Him............I have found life!
Tuesday, September 1, 2009
Complete craziness.............
I don't have any insight this morning because I can't get my mind to settle down enough to write anything productive, helpful, or thoughtful. I have laundry to do, homemade noodles to make, dishes from last night to do, plan the day accordingly as Koda and I both have doctors appointments today. Holly just emailed me from school and she's not feeling well along with an ingrown toenail that I can't get out.......it went too long and now it's really infected. Unfortunately she inherits that from my side of the family. Yuck!
I'm still smoke free, and that will continue to be a daily accomplishment and sometimes down to the minute. I'm mindlessly loosing weight just as the book said I would......it's great and I'm not even trying. Well I have more realization of what I'm doing since I have read the book. It's great and a very educational book in regards to our society; not the normal everyday need to diet and exercise book........you know eat less, move more strategy. Though we all need that reminder daily too. I haven't given up my chocolate or anything really.........it's great, and I blogged about the book before "Mindless Eating". Enough on that, now I'm hungry.
Ok, if I'm going to get anything done today I have to get all my computer stuff done and out of the way........then on to the house chores. Sorry nothing exciting, but I am praising God for another day, another breath, and another day to enjoy the blessings from Him. God bless and have a wonderful day!
Please disregard the craziness of the blogsite for now as I'm working (re-constructing) on it. I'm not so tech savvy when it comes to all this (backgrounds, etc.), thanks to Kristi first off for all her help already. You may check it one time and it'll be all crazy then the next time something else; so just enjoy the humor as I learn.
..............makes the tummy hurt with laughter! Lovin' no routine to life........just live it with joy!
Friday, August 28, 2009
I Quit - Anxious Ahmae's MySpace Blog |
I Quit - Anxious Ahmae's MySpace Blog |
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Thursday, August 27, 2009
Accomplishments...........
Wednesday, August 26, 2009
Unselfish.............
The purpose of us all really is to step out of ourselves and accomplish that of what is needed by others........how do you get involved, help, donate, or even pray??? Stepping out of yourself takes the Heart of God to get it accomplished! I pray for that daily! It's short and sweet today as we are busy with family advocacy day at school, Shawnee Dispatch doing a paper on NF, Koda and our Ride4Research event in Oct. Back at the blogging ground tomorrow, until then; may your tummies hurt from laughter!.............hearts are blessed!
Tuesday, August 25, 2009
In the Dew Drop.........
Friday, August 21, 2009
Enemy is at my door............
Thursday, August 20, 2009
God's Breath.......
I was really scared that I might turn to food to fulfill the place that the cigs did; but it's weird, I did ask God for Him to fill it so that I wouldn't fill the void with an unhealthy substance. He has sustained me and filled me with His glory, love, and spirit. I continue to pray for my husband, Rick, that God will be the temptation blocker for him in such trying times at work. Almost everyone smokes there, and being the lead man he is; there is frustrations with people, job, trucks, and just life @ work........as with anyone. He hasn't totally quit yet......I think one cig a day......which is remarkable; but I and He needs to quit; my gosh it was his idea! LOL
I must say there is a greiving process to give up such a love, and it was a love. I was connected, and cigs were always faithful, always there and dependable, gave me a drive like no other.......but when I look back; my priorities were really messed up! Cigs before food, drink, bills, gas, before anything. I couldn't function........really couldn't the first 24-36 hrs of this was terrible. I wanted to scream, pull my hair out, die, kill someone, and I'm sure my family was about to put me out on the streets or admit me. I didn't like who I had become; but in reality that was the real me and cigs only suppressed that like some sick disease. Where was God? He was there I just didn't depend on him to fulfill the void......or did I, I've made it this far; and definitely not on my own. I couldn't have done it, I am too weak; really weak when it comes to..........just go get a pack. I mean the kids have gone to school, no one is here.......go outside so the smell isn't in the house; one won't hurt........ohhhh but devil you are such a liar; and always right there on the other shoulder to whisper sweet lies into my ear! God is stronger and thankfully I hear His voice much stronger.......and then I breathe in..............God's breath!
Wednesday, August 19, 2009
Raining....
Tuesday, August 18, 2009
Where's the structure?
Drugs are all bad when it comes to withdrawing.........and I can't imagine having to deal with more than one addiction at a time; but I am; food.......it's sneaky, manipulative, and alluring but only because I allowed it to be. I decide where it is placed on the shelves, refrigerator, and cupboards. I decide what the food is that is brought in, and then I get mad at the food.......uhmmm getting out of the denial that it's my decision, my choice, my desires that have made this what it is.
I'm influencing my kids in a way that is not the best I know.......but at least I am seeing it, and thankful to a very special dr. that has come into my life due to the desire to get this "body" structure remodeled. He has given me homework, a book called "Mindless Eating" by Brian Wansink. Awesome information........actually stuff I thought I knew but I really didn't. Another book, God laid on my mind, for you girls "Captivating"......by Staci and John Edgredge......for the guys "Wild at Heart".....by her husband John Edgredge. I really just dare you to take the moment to indulge in yourself for a moment and find serenity.
Back to reality, a craving is heavy, but it doesn't seem as long today. The thoughts that I really didn't decide to quit this time makes me want to go to the gas station and just buy a pack. I don't want to quit, and I enjoyed my cigs tremendously. Really, sick I know and the stench of them but I liked smoking. I have now made it a full 48 hours.......two days.....why oh why would I want to smoke another one; but I really want one! Just one, maybe just a drag and then ..........oh bologna I know I wouldn't stop with a drag, one, or anything less than just not doing it. Prayer is needed, and let me find my filling in God alone. Until we talk again, thanks for listening!
Monday, August 17, 2009
Another day, another hour, another minute
When I post it, then I am asking for accountability, prayer, and support. I am reaching out to receive all that is out there for me to find serenity in all of this. This I can change, but not without the help. Just like no one can find a cure for NF without help........it has to come from somewhere, and someone has to volunteer. With the economy the way it is, some are holding back tightly to protect themselves. I used to hear it all the time; take care of yourself because no one else will. The bible says to "what good is it to save the world, and leave yourself" of course, I'm paraphrasing. We do have to guard ourselves at some point, but we must also be givers without a selfish heart.
As we know I'm a blogger of each and every thought with no plan when I start; just looking for a way to deal with life in a "normal manner" without going crazy keeping track of stuff all in my head. I release a lot of stress, emotion, and fear when I journal/blog. I have notebooks full of writings that have been my deliverance thru whatever the case might have been. It is just life and for whatever reason; mine includes writing. I'm sure Koda's life will have something to do with trains, planes, automobiles, construction equipment, fire & rescue trucks, and a cape of some sort naming his SuperHero logo/name.
The kids started school today. Halie is in Gainesville @ her dads', Holly and Koda here w/ us. Holly now a Sophomore, and Koda just starting out in PreK. Gap in time most definitely but I have decided Koda is here with us for an eye opening experience and to keep me young. :OP.
My greatest desire is for Koda to finally catch up with his delays this year, and take off learning! I must say having two gifted teenagers, and years of grade cards w/ "A's".......has spoiled me some. Both girls always eager to learn and a drive to succeed. I can only hope that Koda would ever see that. Right now speech, language, processing and retention, are some areas that I pray that he walks out of PreK right where he should be. God give the teachers the patience and experience to help Koda in the only way that they can. Give Koda a mind that thrives to learn, and the ability to do it. Help his tongue and brain to connect correctly so the transmission of hearing words is clear..........as we know his hearing is fine now. I also pray there is no signs of dyslexia; as he has enough to conquer now.
Funny how I can go from talking about cigs to my kid's education........all over the place my brain does go; but walking away with a free/clear conscience is the ultimate serenity. Now all this time with the kids in school; do I nap.........or do I become SuperMommy and get the house all clean, or do I get to job hunting like I should do as all the other will wait. Uhmmm, my eyes are heavy; and there's a mountain of clothes to fold..........job, I have a job; it's called Mommy, but the hubby doesn't see it paying any bills I guess. So for now I'm going to soak up the clear air in my house by breathing deep; enjoying the sound of the strong rain on my porch w/ a metal rooftop, and endure and surpass another moment without a cig. I want a cigarette!
Saturday, July 4, 2009
Puzzles
Puzzles! They cannot be called such if they had smooth edges or didn't challenge someone where each piece belongs. CTF.org has a puzzle piece as it's logo, and life gives us times where we definitely want to know where we belong. We are each just a piece of a puzzle in God beautiful picture of creation. Each part of our lives is it's own piece as well. Total chaos in the journey of putting it all together, but boy when it's done........absolutely a perfect fit and beautiful picture.
So as new pieces are being discovered in my life, and trying to put them together..........I have found patience, peace, joy, contentment, empathy, understanding, faith, hope, love, and endurance to be a few of them. Though many times life is not the way I would want it; I do see where I have been challenged, tested, and pushed to make some decisions that effect every part of my life later. Consequences come from those choices whether good or bad. Some come as easy as slicing melted butter and some like an overweight person in very poor health trying to climb the tallest mountain; a struggle. That struggle though is what teaches us the most, not the easy stuff. Sometimes we forget to be thankful with the simple easy parts of life that we are allowed to experience. If nothing ever went wrong, what would be like.......I don't even want to know. Selfish for sure, as we already have that instinct within us. Greedy, uhmmmm that would be off the charts. What would we learn? Nothing!
I have started to write some segments of my life and hope to publish them for all to read. It has several series and/or parts. I'm not sure yet if it will be one big book or a several little ones........letting that just flow by the Grace of God. Pain of life and the journey where it has brought me. There is a lot of pain in this life and The Bible actually reflects on this. I find comfort in knowing that each pain only lasts a while. Thank God, He really doesn't give us more than we can handle........even though I question that when I'm in the midst of it. Puzzles; let's solve them!
Friday, June 19, 2009
Monsters taking lives but God turning it around for the Good!
I hate cancer, neurofibromatosis, and anything to do with kids dieing over something they have no control over. Tooo young, but so precious and pure......and we are to have the faith just as they do. It doesn't stop the pain though, it hurts and it hurts bad. Tears not of joy but pure deep sorrow. I never want to be in the position of any of these parents, but at the same time have realized that it is my reality. It really could happen, but I refuse to let it overtake my life; and that's why I write. It's my way of praying as well.
Koda's MRI scan came back clean with no tumors on the spine, but because we have no local NF educated specialist; they didn't realize it was a dermal tumor. We just got back from St. Louis, thanks to the NF clinic @ Cardinal Gleenon Children's Hospital, and they immediately knew just by looking and feeling. We got pretty good news and at least some things are starting to happen. I can't just sit and watch like our pediatrician recommended until something happens. I want to do something to help decrease or stop the growth of this tumor that could eventually really deform, constrict vital organs, or even take him. No, sorry can't just wait. No one referred us to St. Louis, I just knew from others that their was an awesome NF clinic, actually 2 clinics there; so I was bound and determined to find my son some additional options. What any mother would do, right?
I have such big hopes and dreams for my kids, but they are only here for me to take care of and are not really mine, but the Lord's. He made them, and I'm responsible to take care of them. I heard a bit of some exciting news from my youngest girl........she's home sick, uhmmmm and wants to come back home. Yea!!!!!!!! I won't get my hopes up just yet, she is a teenage girl; and definitely has the potential to change her mind. Makes for a happy momma though to know that I apparently wasn't so bad that she's willing to come back to live with me. No one knows, and please don't post anything about this on FB, MySpace, or anywhere else........she hasn't decided yet, her dad doesn't know and I don't want anything to happen to cause any problems for her.
Boy, it's been a long while, but I so needed to let my hands fly. After living most of my life using sign language due to my mom being deaf.......then losing her in a horrible traffic accident when pregnant w/ Koda.....my hands just fly when typing. I really write down way to much before I think. Venting.......better this way than a fight w/ someone or something. God has chosen me to have a child w/ cerebral palsy, one with neurofibromatosis, and one exact copy of me......purpose? Not sure, but I do know that the one that is an exact copy was a way to pay me back for all I had done. I so gave my granny an apology for all that she had to put up with. I have fabulous kids, and am very blessed to be their mom. Thank you Lord for such an opportunity to get to know these kids to the heart, and also allowing their issues to lead me to new friends, gained hope, and a driven purpose! I appreciate everyone who has stayed connected, concerned, and most of all faithful in prayers. Life could be so much worse, and I thank God it's not! Until next time, hope all is well with you and yours! May you be under the showers of blessings! Hugs!
Tuesday, June 9, 2009
It's been awhile.....
Monday, May 4, 2009
Wednesday, April 29, 2009
Wednesday, April 22, 2009
Maked a trip to the emergancy room/urgent care
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.
Saturday, April 18, 2009
April showers brings May flowers
Thursday, April 16, 2009
Where are we going?
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.
Wednesday, April 15, 2009
Neurofibromatosis has got to go!
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
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.
Thursday, April 9, 2009
A beautiful poem about a front porch in my past!
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
Wednesday, April 8, 2009
An evening in waiting finally comes true~Smokehouse eXtreme!
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
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