The journal.........

As I wrote in my journal today; I asked why? Why do I journal? My journal is everything to me, it’s my life on paper; my every thought, desire, light bulb moments, goals,…………  I’m in too deep……but I keep going back for more; save me!  I really think that I am being truthful when I say I am emotionally devoted to getting my story out to the world that deeply hides the very same secrets, desires, and experiences in life. I have always known I was supposed to write a book; what type of book…….never really knew.  It’s becoming very clear to me today that I have been led down a path of deliverance that has brought healing through such writing. I may not even have a thought when I start, but I start even if it’s with what I had for breakfast; then it just rolls off the fingers.

I don’t know even where to start on getting a book published, so that’s one of the excuses of why I never did it. I have found so much happiness in life and who I am through these writings; who knows, maybe this is really my “purpose” in this world. I’ll never know if I don’t try, right? I always thought it was to interpret for my deaf mother, or help my grandma think through things and be the only one who seemed to care about her, to be at the beck and call of some man, to mother my three children…………….Wait, what about me?
Ohhh that sounded selfish! I can’t do that, it’s not right to think about me when I still have so much to do for everyone else. I can no longer interpret for my mother, she’s no longer with me; but hearing all the beautiful sounds of heaven. I am no longer “needed” to take care of granny because she now lives with my uncle, and she has “forgotten” so much that there are days that no one else exists in her life but him. I am no longer being at some man’s beck and call because I’m not with a person that requires that of me any longer. I will always be a mother, and that job really never ends just the job duties as they age.

All the stuff I have to do: really is only Motherhood, and it doesn’t require my every moment; though it sometimes feels like it. How I can be the best for everyone else if I can’t be the best me. I can’t be the best me if I’m depressed, fatigued, and so busy doing ……..and if I’m not the best me how can I be the best at what I do. I do desire being the best in every area of my life. No I’m not a perfectionist, and I realize that I cannot be the best at everything. I have desires that I want to fulfill.  Why shouldn’t I be able to do it; it is my life, isn’t it? Why have I been brought up in this world to think that living by giving to everyone and not taking myself into consideration is the way to “leave my legacy”? Who taught me that? Was such teaching by example; now that I write it down……….it was. The very people who taught me that are/were unhappy, alone, no one comes to see them, gave everything and have nothing, lost a sense of reality…….why would I want to end up that way.

Why? No! I refuse to end up that way………life is too short! I have some more changes to make……..it seems to never stop. It’s autumn now……….another season in my life; I really like it today because its full of vibrant rich colors! I am happy! Without my journal I don’t think I would ever figure a lot of my life out the way that I have. I have found freedom in my writing even though no one may read it, but they do read it. I have got many emails from people stating they feel the very same way, and I have been thanked for showing such subjects in another light. There is a reason for it all…………and I am full of emotions right now about the exciting new seasons coming my way.

Can’t wait to share it with you! I’ve always wondered why I would lay awake at night running so many thoughts through my head; it was “time to journal”. There is a time for many things in life; cry, laugh, dance, ……..it’s best said: Ecclesiastes 3
A Time for Everything
1For everything there is a season,
a time for every activity under heaven.
2A time to be born and a time to die.
A time to plant and a time to harvest.
3A time to kill and a time to heal.
A time to tear down and a time to build up.
4A time to cry and a time to laugh.
A time to grieve and a time to dance.
5A time to scatter stones and a time to gather stones.
A time to embrace and a time to turn away.
6A time to search and a time to quit searching.
A time to keep and a time to throw away.
7A time to tear and a time to mend.
A time to be quiet and a time to speak.
8A time to love and a time to hate.
A time for war and a time for peace.
………………..and now my journal has helped me realize there is a “time for me”! Enjoy Life!

A deep love........

A woman's heart should be so hidden in Christ that a man should have to seek Him first to find her.

A Father figure...........

You don't want to miss this story; I have moved everything for a time being to another site; trying it out.......please don't stop reading!

www.freeconscience.wordpress.com

Love you all!

Confirmation of the obvious...........

has been right in front of me the whole time. The directions we take are always right there, but then we have to decide which way to go. I sometimes miss the direction due to my own anxiousness, determination, and desires. When Koda was originally diagnosed with NF (Neurofibromatosis), I was anxious of the unknown. Looking to the easiest access which would be the Internet at the time. I was devastated with what images and stories I came across. Yes, NF can cause such dramatic effects & I know now some very special people with some of the worst stories. I am so thankful that I was connected to the right organization thru my local Neurologist to help me find the most helpful doctors right from the beginning. I won't go into the whole story at the beginning, but one of those times I was personally referred by two different people to Dr. Gutmann in St. Louis @ St. Louis Children's Hospital. Due to not wanting to wait until I could get in, I took the hospital (Cardinal Gleenon Children's Hospital in St. Louis) that could get me in first. They have an NF clinic and was listed on the referral list too. Don't get me wrong, I'm not in any way having ill feelings to the NF clinic @ CGCH. 

We just had a "Ask the Doc" conference at KU Med Center on Saturday which Dr. Gutmann was one of the guest speakers. I was so impressed with the answers he was able to provide, and he is looking at a "new" way to treat NF.......for one it's a whole team totally constantly communicating to give the best care for their patients. I've had some communication issues, and its frustrating when you live 4 hours away. The point of all this is really.........time is valuable and sometimes you really do have to wait! Wait! Wait! and Wait! Its ok to wait, because the best comes out of it. If nothing else wisdom is built while waiting. I was really excited to have an actual scientific doctor talk with me about a natural approach to NF as well. Waiting has educated me in the realm of NF too, so now I know how to better prepare myself before an appointment with such a doctor that seems to give it to you pretty direct & if he doesn't know he says so. Love that.

Don't miss your path of opportunity.....................its right in front of you, and you have a decision; sometimes its to wait until you actually see the path. If you get off though...........you can always get back on the right track. I'm turning around, and pushing through w/ power and determination!

A medical rage...........

 ........is what was brewing in the very pit of my being Monday. We had made another trip to St. Louis just two weeks prior to meet w/ our NF medical team. After being told that Koda's tumor has grown in the trachea area, the doc didn't want to "wait & watch" any longer. He asked us to please see the oncologist within their facility to start or at least discuss the next medicine Koda would be taking to at least stabilize the growth if not shrink it. So in-fact we did; made another appointment/trip to St. Louis to do this very thing. 

I won't go into all the rage of thoughts and emotions this mom had.......there really is no point; because anger doesn't solve anything. The rage didn't make anything else happen, it really didn't do anything for myself or Koda except make for a very upsetting ride home. I was planning on venting here about how no one really knows in the medical field it's just an educated guess.........and I don't know that they really care it's just money in their pocket; you know the same reason we all go to work.......money. Well that was another rage was the money we had put out in traveling, eating, co-pays, etc to make this trip. That money vary well could have been our grocery money for the week, or a gas money to get to work for the next couple weeks.......not only setting us behind but putting Koda out of his "schedule" which is so very important to keep. One day off makes for a whole week off for him. Just some of the thoughts that ran through my brain at the time. 

The appointment was just a pure waste of time, the doctor not only had not had time to review his MRI results, but had not even looked at his file until 5 mins before. She stated "he looks good, so I don't see why he would need to have any meds"..............that's all fine with me too if he doesn't need them, or no chance of helping then I don't want him on any unnecessary medications especially with the side effects that most of these meds have. BUT............didn't you just say you didn't have time to look at his file or the MRI; how do you know by looking at him? Now, I laugh.......it's ok; because I needed this time to sort some things out myself:

Koda has been allowed to be diagnosed w/ NF & this large plexiform neurofibroma for a reason......whether I like it or not; so where do we go & how do we go about it now. The doc stated she would "try" and put Koda on this Thursday's Tumor Conference (today). Wow, they have tumor conferences.......to bounce off of each other what the best educated guess is (like on the TV show "House"). Some of the most educated people right now are flipping burgers due to the economy...........multiple degrees, etc; so are these people that I have been taking him to really the ones that are suppose to be directing us at all? That's the question I have now.

We have the right & should question everything when it comes to our kids! I'm doing that..........so just in the right moment of it all; the clinical scientist, doctor and director for Washington University's NF Center, which is the world's largest research center for NF is coming to KC for a "ask the doc" conference this Saturday. He actually works at St. Louis Children's hospital; probably where I should have been going to begin with. YES, I'm going to the conference! So instead of being angry, I decided to look at this as glass half full......because my very answer may just be at that conference this weekend. Maybe Koda doesn't need to be on these meds at all, maybe just maybe he's suppose to end up with a trach, be on a breathing machine, be on a feeding tube.........just maybe he is. Ohhhh don't doubt for a second that I don't believe in miracles & have faith in a very powerful God & prayers...........but sometimes He allows these things to happen for the good. Really, I've seen it first hand! Am I going to stop doing anything for Koda & just let it happen like that.......NO I'm not stupid and heartless! I don't want for any bad thing to happen to any of my kids, but I need to face the reality of life as well & of this disorder. Koda isn't go to die, but he may have to face many trials along the way as so many of us do. We without anger, as parents, just need to be there to guide him in the best way possible, and with all the prayers do everything we can to make him be the best he can be.

...........is still something that touches every nerve I have, but anger doesn't solve it! Love does! 

Different outlook on life............

............after having a child w/ Cerebral Palsy and another with NF, ADHD, RLS, and PLMD. I also believe in Karma, I thought people stating kids/adults w/ all these alphabet diseases were in some type of hypochondriac disorder themselves. Then, I was faced w/ our precious Koda...........the flying monkey, bull in a china closet, can not sit down or still for "one" moment, chaos. :) I can smile about it now, but I was rather slapped in the face that these "Alphabet diseases" are real; well real in the sense that the medical world has given a name for such behaviors. Such disorders are not fun, they take work & strong interpersonal skills to deal with such an active body. You don't really get it, becuz that's not how you are..........

I was once told by another w/ ADD that the brain is like walking into a electronics department w/ all the TV's (you know like 100 tv's on in one place) being on different channels......and you want to be involved & look at all of them; you like all of them; my mind blows trying to have two conversations let alone trying to think about, be involved in, and liking each and every one of those "actions" going on.

I've also been told, he's a boy........he's supposed to be rowdy, running, etc. Yep, he sure is; but not to the point he hurts himself & others w/o any comprehension of doing such. When he jumps on every chair in the lobby and no discipline, attention, direction works; becuz he can only think about all those things in his head at once plus getting in trouble. Its like the he is the tv, and the remote is stuck on channel up/down back/forth constantly.........and my words of direction are in there somewhere but he can't stop on it long enough to think about the consequences let alone care. I saw the results of his brain activity........well it's the best and fastest ping pong game ever and never ending.

As I posted on Facebook though, I really have decided that Koda has a diagnoses of creative energy......its ok that the medical world wants to call it ADHD, so they can have a reason to prescribe drugs to make "themselves some $$ bonuses from the pharmaceutical companies", and make our kids get to the point "the world calls normal behavior".

Its all ok, but really every bad can be used for good! I believe things happen for a reason! I'm not saying that medication, docs, pharmacies, etc are not needed; they are needed and they have their place.

Koda is medicated for his creative energy, but not w/ stimulants like most that "alter the behaviors, spirit, natural given personality of a child".

If everyone sits down & is always quite.............what a boring world this would be. I know these types of people can drive others crazy; but it's ok! Its ok to be different, and "not normal"........who decides that anyway? Who would run the marathons for fundraising efforts such as NF, Cancer, etc.  or happen to be in the right place to save someones life........without such energy. We need people who are multi-thinkers on a dime, so decisions can be made at the last minute: for example, we need to save our country? I'm not making excuses or cover-ups to make myself feel better about having a child with such issues......but I am standing up for the spirit, personality, and/or natural nature of who we are inside & most of the purpose of what we are to become.

I never heard of public school homeschooling...........or virtual public school, well I knew that to get Koda out of "the troubled child" stage at school we had to do something or his spirit would be weakened if not totally crushed by no, stop, that's not right, wrong, sit down (when he can't), because he would be considered different, slow, special ed.......it's all ok, becuz we decided to home school him this year. I couldn't afford at the time to do a Christian based home schooling due to all the costs of supplies, etc. Plus with him being in a brick & mortar preschool last year; they did set up an IEP (Individual Education Plan); so he will continue to get services (therapy, etc), thru the school district.

We are one week in, and I am smiling at the progress........I am enjoying my child! I was concerned w/ the social skills he would need; but there are a great group of leaders, seasoned moms, etc....and even new ones; ready to get our kids together often to play. Matters of fact, we have our 2nd group play date tomorrow........he has looked forward to it all week & worked hard! I have more energy......wow it takes a lot to get a long drawn out boring story to be interesting to a boy that could care less; but we act out our books.......pics will be posted soon. Truly enjoying my relationship as his learning coach, and allowing him to be just what he is supposed to be.............FULL of LIFE!

A different outlook on life.............You have a purpose ......I'm positive it's all ok, and different is good!

So many thoughts............

as I laid my head down to sleep last night. I had all the words & was reciting them as to my new blog for today. Guess what, can't think of one of those fabulous words. I think & write much better when everyone is sleeping or gone........time alone doesn't happen much. I've started a new journey & think I need to use my other blog page to share the journey w/ others. For those of you that don't know, I'm having the Gastric Sleeve procedure done in October. I was supposed to have the Gastric Bypass procedure done this last April, but my insurance company put in a new stipulation; 6 months of dr supervised diet. Well I just went for my 3rd one yesterday & am very motivated in my new life of food & living. I've lost 20 lbs in 8 weeks, not counting a few before this journey began. I believe the new insurance requirement gave me a new insight to the other options @ one of the support groups. So if you are interested in this journey it will be posted at http://www.free-conscience.blogspot.com/, come follow if you like.......................many pounds will be lost! :o)

I'm back..........

@ being an at home mommy. So, it's been a week since I've been home full time and daily I can't wait to get back to blogging! It will take me a bit to get back into the groove of finding the time & scheduling such time appropiately. I have to refresh myself w/ the site again, etc. Talk to you all soon...................and I am happy!

Snow................

I'm tired of it already~ I love it when it comes, covers, and melts by the next day. Ok, I'm starting a new job tomorrow and it's still snowing! Am I complaining, no just wanting to vent about the weather's decision to make my first day of work a challenge. I love a good challenge; so God help me to face this challenge with safety and sense. LOL that is where the true challenge is; me having sense :o)! Happy New Year everybody!..........its still falling.