His Meltdown and my insanity

I must be insane because I didn’t just totally beat him to a pulp; though the thought I must honestly share crossed my mind. I should have seen the red flags this morning as I knew before I walked out the door with him that the email said the sale was over by 9am, but in reality it was 9pm. So, that in itself was the reason I went. You know a 50% off everything when it’s already a clearance store is a “BARGAIN”. Well, the other red flag was I had just given him the beginning daily dose of meds that takes some time to work. But, see if I didn’t get there as early as possible; all the good stuff would be gone. A Bargain is just what I got after being in the store only 5 mins.

I saved more money today than ever besides the wasted gas altogether: A real bargain! I didn’t spank, and didn’t hurt him in any way. I did however make him get in the cart until I got him to the front of this totally every isle packed store; though everyone could hear him clear to the front as I was trying to make my way there. Jumping, jerking, pulling, kicking, pushing, yelling, crying, NO, NO, NO! I didn’t say a word, and then one lady asked how do you not break the temptation to slap him? Really, did you just ask me that? Apparently you have never had a child with any type of developmental or behavioral disorders (don’t all children without such problems throw such a fit once in a while?). Is this an excuse for him, NO, but there is a time and a place for such; and slapping isn’t it. If I were to have slapped him, we would have had a much more scene to write about; which would have included the security or cops.

What was best for him and myself, was more than just a time out in the vehicle this time. It was leave and go home. I put up the movies we had picked out for him; which made the meltdown worse. As soon as I got him out of the cart, (first time ever) he ran off to the back of the store (where the toys were located). I picked him up and carried him out; wow, he’s getting too big for that. Quite the fight I must say keeping ahold of him. As soon as I get him out the door, he falls to the ground with a complete fit/meltdown. The worst I have ever experienced or seen (of course, mine is the worst because I am living in that moment. When it’s someone else, I always say : I understand with a smile).

So once outside, I walk off to my truck and tell him I’m leaving “BYE”. He comes screaming and running towards me, and once we’re in the truck; he’s calm. See he actually does this quite often when we get in a busy public place; I’m noticing. I think the atmosphere and of course how I react about something causes such outbursts. I’m a mom in the study of what makes my child act this way, yes this is my soon to be 6-year-old. I tell him I am unhappy and sad that he has treated me that way, and that he felt he needed to act that way. I proceeded to tell him not listening to what is asked….he interrupts with “I’m sorry, I won’t do it again”, well we have heard that every time he does anything wrong. I told him, “I’m not talking to you until we get home”. A nice quite drive home.

I cried, I couldn’t help it: I’m overwhelmed with emotion of what, why, what should I do, etc. This kid controls my every step of my life, it’s all-consuming at times. I want to run away. I want to be “normal”, and I just want I back. (Tears of Honesty!) I’m saddened not because I didn’t get the bargain, but because I hate seeing him so out of control. I hate that I feel so stuck and alone. Never taking him anywhere is not an option, I don’t feel right dropping him off places to have him watched by someone all the time. I feel guilty if I do, and the mad at myself because I don’t. I home-school him too, so he’s with me every moment.

So when we got home, which I forewarned him, I took all (3) bins of toys out of his room. No movies, no going outside, no playing…just time to sit and think in his room. I’ve never done this exact thing before, so we’ll see. It’s been 30 mins since we been home and I just had to get it out. I had to write before I blew up. I want to scream and throw a fit too! Is that insanity because it sure feels like it.

Dancing around…

like a lil’ girl in her new princess dress. Its 24 hours pre-op surgery, and I’m a nervous wreck. I’ve went through every emotional thought possible, denial, acceptance, anger, grief, and the one “what the heck am I doing”! I typically would put this post in the new weight loss blog that I’m doing, but it seems to fit here today. It doesn’t matter what we decide to do in life there is always the consequences of that decision. There is a thought process that we all go through when making such decisions, now I will say that I have not always thought through each decision properly. I’m quick to jump sometimes, I must admit.

I didn’t jump at this one though I wanted to. I wanted to lose all this weight that I have damaged my body with a long time ago. I’ve wanted it gone, but seemed to keeping adding it on. If I had only danced around with every decision I had to make…that would have been some additional exercise not normally in my “daily” activities. The reason I bring up “dance”, is that someone brought to my attention that I’d been dancing around the questions given to me. I had to stop and ponder that information. Why, was I, how, when, where, what subjects had I done that with?  Clearly after time of being medicated, a little extra sleep, and quite time…….I realized I had done exactly that. I didn’t have a direct answer to anything I was being asked.

See, dancing allows one to be free, expressive and beautiful in approach, but not giving the full effects when I am being selfish and not sharing. A dance is beautiful when by oneself, but not near as direct as one that dances with another. My point is that I didn’t want to reveal the “real” me, I don’t want to talk about “me” because there is so much more that needs to be revealed. I don’t know that I’m ready to share that, and if I stay off /away from the subject then I don’t get hurt. When you dance by yourself, there is no one to trust but yourself. You don’t have to rely on that other person to make the right moves. There are times that I’m angry, sad, hurt, happy, laughing, etc. but sometimes I don’t think I should share such information. The desire is there to look a partner in the eye and dance in truth, but I wasn’t so sure that I could trust giving any information. Trust is something that has to be built with me, it’s not naturally given. Trust takes much practice just like learning to dance with a partner. I’m not saying I don’t trust, I’m saying that it takes a few practices for me to feel the security.

I agree, I danced around…..and I probably will until all layers of insecurities have been peeled away and revealing of such truth has it’s time. It takes such comments to make a person see what they need to do or are doing. I was hiding behind the questions (hiding behind the dress making it all seem as if everything is okay) instead of standing face forward with a direct answer. As I make these new steps in my life, this is one exercise I can say that has been perfected in the sense……..I can dance with you now! I can be open, honest, and look you in the eyes in the still of the moment & answer directly. Partners can be your mother, your brother, anyone that you come in contact with. Come dance with me, direct truth is a beautiful song…I am and will continue doing life with a free conscience.

…with a partner eye to eye, makes for an unforgettable scene of passion, integrity, love, truth, and beauty.

As the lights go out there’s still: The Evergreen…

it is a reminder of daylight savings time. Coming this weekend we will be turning our clocks back one hour (spring forward, fall back). I must say this particular event is not my favorite as it heads me into a sense of sadness. I’ve always fell prey to the darkness that seems to take over our days. It’s really a twisted argument and engagement all at the same time.

I love this season; the colors, remembrance of  gratitude or thanksgiving, the crisp air that blows the most detailed and beautiful leaves, the picture perfect photography that is birthed in this season, etc. There is football and still some NASCAR all at the same time 🙂 Yay! Then there is BUT………it means heading into winter; the time to celebrate the birth of our Lord, crystallized snowflakes, no school days, all those things at one time in my life I was okay with.I still love all those times/things…….but the darkness seems to take me to a place that I tend to lose control of how I function. I lose a sense of: passion to awake in the morning, motivation to laugh/smile for no reason at all, endurance to do my daily activities, control to crawl out of the hole I seem to have fallen in. I don’t know why this happens nor when it started really. I just know it’s almost that time………and I’m feeling the grave cold of it all.

Depression is a word many would place here……or at least seasonal. It’s a dormant time, a time maybe for growth, listening & not talking, healing…..I don’t know….I’m not sure, but I do know that I always come out eventually. Can I stop from going there this year? Will my new hope for a healthier me (due to surgery), give me all that I need to face this yearly giant that visits me? I sure pray so! It all reminds me of the tree…….the tree has been a very significant symbol throughout my life.

Spring…….the rain gives life to the new forming flowering buds in their youth. Tulips, lawnmowers, fertilizing, and a new sense of energy. The days get brighter as the sun is allowed to be in our presence more hours a day. The tree……new life of green babies exploding daily.

Summer…….the sun is warming our faces, fresh garden vegetables, family vacations, sun-made ice tea/lemonade, blooms of every color and shape surrounds us, ice-cream, baseball games, drive-in movies, romance and play dates in the park. The tree……a strong covering of shade in the heat of the day, vibrant and beautiful shades of green make the most beautiful sound as God breathes.

Autumn……the days of sunlight shorten, there is a crispness in the air, pumpkins, and goblin celebrations, candy, second quarter of school, time to think about Thanksgiving dinner, rakes, and double-check of water hoses, shut off valves, winterizing, etc. The tree…….the most mature upright mix of color (reminds me of all the human races that surround me daily) makes me get on my knees with true thanksgiving for God to allow us to just get a hint of his perfect tapestry.

Winter…….winter break, Christmas presents, sledding, parties, decorated trees, snowflakes, houses all lit up, pies, family gatherings and football games, the dropping of the New York City ball and countdown to the new year, but so many expectations and commercialized chaos. The tree…….shedding the last of the leaves to become dormant, gray, and seemingly lifeless. It is not so pretty on the outside, but I see its beauty from within as it quietly rejuvenated itself for the next season of duty.

I think I have to choose a different tree for a different season……..The Evergreen; it is beautiful with colors when strung with lights, deep green all year round, and has  protective pines that can withstand anything. They stand tall, and with wisdom their bark speaks.

The tree is my vision of how my life truly is; it has its seasons, duties, and most of all strong during the storm! 🙂

I pray much peace and happiness to the souls of my friends and family during this holiday season!

My weight loss journey……..a NEW blog

A new blog!

It’s actually going to happen 🙂 Surgery is in 11 days. This blog above will only be about my journey if you care or interested in the procedures out there for weight loss, obesity, or just plain curious.

Fear keeping you…..

from what your heart desires? If I would have never told…….I would have never found out; so glad I did!

10th grade

As I sat there in English class, I stared at the girl next to me. She was my so called “best friend”. I stared at her long, silky hair, and wished she was mine. But she didn’t notice me like that, and I knew it. After class, she walked up to me and asked me for the notes she had missed the day before and handed them to her. She said “thanks” and gave me a kiss on the cheek. I wanted to tell her, I want her to know that I don’t want to be just friends, I love her but I’m just too shy, and I don’t know why.

11th grade

The phone rang. On the other end, it was her. She was in tears, mumbling on and on about how her love had broke her heart. She asked me to come over because she didn’t want to be alone, so I did. As I sat next to her on the sofa, I stared at her soft eyes, wishing she was mine. After 2 hours, one Drew Barrymore movie, and three bags of chips, she decided to go to sleep. She looked at me, said “thanks” and gave me a kiss on the cheek. I want to tell her, I want her to know that I don’t want to be just friends, I love her but I’m just too shy, and I don’t know why.

Senior year

The day before prom she walked to my locker. My date is sick” she said; he’s not going to go well, I didn’t have a date, and in 7th grade, we made a promise that if neither of us had dates, we would go together just as “best friends”. So we did. Prom night, after everything was over, I was standing at her front door step. I stared at her as she smiled at me and stared at me with her crystal eyes. I want her to be mine, but she isn’t think of me like that, and I know it. Then she said “I had the best time, thanks!” and gave me a kiss on the cheek. I want to tell her, I want her to know that I don’t want to be just friends, I love her but I’m just too shy, and I don’t know why.

Graduation Day

A day passed, then a week, then a month. Before I could blink, it was graduation day. I watched as her perfect body floated like an angel up on stage to get her diploma. I wanted her to be mine, but she didn’t notice me like that, and I knew it. Before everyone went home, she came to me in her smock and hat, and cried as I hugged her. Then she lifted her head from my shoulder and said, “you’re my best friend, thanks” and gave me a kiss on the cheek. I want to tell her, I want her to know that I don’t want to be just friends, I love her but I’m just too shy, and I don’t know why.

A Few Years Later

Now I sit in the pews of the church. That girl is getting married now. I watched her say “I do” and drive off to her new life, married to another man. I wanted her to be mine, but she didn’t see me like that, and I knew it. But before she drove away, she came to me and said “you came!”. She said “thanks” and kissed me on the cheek. I want to tell her, I want her to know that I don’t want to be just friends, I love her but I’m just too shy, and I don’t know why.

Funeral

Years passed, I looked down at the coffin of a girl who used to be my “best friend”. At the service, they read a diary entry she had wrote in her high school years. This is what it read: I stare at him wishing he was mine, but he doesn’t notice me like that, and I know it. I want to tell him, I want him to know that I don’t want to be just friends, I love him but I’m just too shy, and I don’t know why. I wish he would tell me he loved me! `I wish I did too…` I thought to my self, and I cried.

An anonymous ol’ story……..If you love someone, just tell them……..you may be surprised that they have loved you all along 😀

The journal

Image via Wikipedia

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!

 

The Father figure………

 

Cover of The Last Song

 

is what most of us would call “Daddy”. First though, I must say that I have been four days thinking about this blog and just couldn’t get it written due to distractions, fear, and really ignoring the pain of it all. I was scared that I might find the wound to be more than the scar it had become. This all started by watching one of the best movies so far this year: “The Last Song“! Amazing! I know, I was skeptical too because it had Miley Cyrus in it, but it was shocking, tender, and humorous all in the same scene so many times. I definitely recommend it. This movie touched a open wound in me, a wound that I really have looked at several times throughout my life; but never tried to completely heal.  It’s like I sprayed “new skin” over the wound to cover it up, but never let it heal properly from the inside out.

This wound is called my biological father, a male figure that had a part in giving me life but had denied his part in it for many years. In short, my mom & this man were married for approximately six months. In that time frame, I was conceived. I never knew this man, and only met him at the age of 12 due to an urgent need to find out family history for an illness I had. So for the first 12 years of life, my family consisted of my mother and maternal grandparents. There was a picture of their wedding day that hung high above the staircase……though my mother had always wished it to be taken down. My grandmother always insisted that I know as much about my father as possible. All I knew is what he looked like, and their side of the stories.

I’m not sure when this wound truly came to be an actual wound, but I do know it has been festering up with a infection from the very pit of me for a very long time. I’ve always had a way to quick treat it with excuses, denial, forgiveness, and other men in my life. That statement alone could be a blog all by itself for another time. The quick treatments worked for awhile, but the subject kept being brought to my attention. Then one summer, summer of 2008, I realized that this very man was the beginning of my conception of men at a very early age and who I was going to be in life. A worthless accident!

Men are not to stick around, they don’t love their wives until death do us part, they are cheaters, they abuse, they don’t care about anything but themselves, they are to be given what they ask whenever they ask it, they are to be idolized, they are to be the boss of everything, you have no say, you don’t count, you are not worth them staying around for, you are not a princess, and there is no prince coming to sweep you off your feet. Your very father didn’t stay around to even see you, why in the world would any other man want you. You are worthless!

See it didn’t matter really what the stories I was told about him were; the only message I got was I wasn’t worth it! I didn’t care that they got divorced, but I did care to have that “Daddy” that so many girls look up to. I did care to have a man acknowledge that I was pretty and their princess; as all girls truly desire. I wanted to be wanted! Don’t we all?

I had a man that tried to take that place, and that was man was my grandpa. He did the best that he could, but no one can really fill that void of an abandoned father. He did do all those things that a “daddy” would do, but he wasn’t my dad and I knew it. I’m grateful to have had my grandpa so close to me, and to try and step in that place that I think he; himself felt he had failed with his own children. RIP, Grandpa Emerson……you were a man that taught me great things, and most of all loved me through it all!

At the age of 12, I met my father for the first time. I grew angry to find that he only lived about 30 minutes from me the entire time. You see, it’s a small world that I was born in because both of my parents are deaf. Deaf communities are very tight and closely knit……..so how was it I never was faced with this meeting much sooner; I don’t know. I was excited, but had a soreness about it all. I met his parents and my half brother soon after that.  I had a whole other family…….I thought for sure now that he could see I looked just like him; we would begin to build this late relationship. This relationship never got built. We seen each other a few times over the next couple of years, but no “daddy” was ever established. I have several times as an adult faced my father trying to get some type of “approval”, but always finding out in the end: I’m not worth it!

I ended up in life trying to have every man unconsciously fill those shoes; so in the end every relationship with men has failed. I had failed as a person, I was an accident and that is why I was abandoned and abused. WRONG!

I made one final attempt that summer of ’08 to mend the heart of a girl whom never grew out of the need for “daddy”……..only to find I have the most wonderful Father of all! He has always been there with me through every tear, laugh, test, boyfriend, car wreck, etc. I got to free my conscience of needing to please my biological father, to gain his approval, to be his princess, to be what he wanted me to be, and to have his unconditional love. My true “Daddy” blows all daddies away………..no matter what I do, He loves me and only asks that I love Him back.  Love in exchange is the only condition in this relationship. I have through my life treated Him just as I felt I had be treated…………I’ve abandoned Him, cussed Him, used Him, lied to Him, abused Him, think of Him only when I gain from it, etc. He forgives me and loves me like the Queen of all the court. Thank you Daddy for being there even though I didn’t know it, ignored it, or denied it. Thank you for allowing the wound to fester up and come to a head, so I could figure out what was Truth, Life, and Love!

So after the movie, I looked in the mirror and cried due to the sadness of it all; but you see that is not what this very movie is even about; I won’t tell the story so it’s not ruined for others. The movie only reminded me of that very open wound that I had for so long…..it reminded me of a time when I had to please men; however, whenever, wherever, so that I could prove to myself that I was worthy! I’m sad because how many girls are living life today “without a daddy”……….but are truly a beautiful Princess that they have disguised through the actions and words of the “not real” men in their lives to be true.

If you believe you’re not a princess……..you are very wrong! You were made in His image, so you are of the Royal Court; and you are loved like no one else! You are His most prize possession. He will not push the relationship on you, but gladly runs to you only if you desire Him……..He’s right there, now. You didn’t read this post by accident; accidents don’t happen…….I thought I was one; I am not and neither are you! You are worth it, you are everything, you are beautiful, and you have a Daddy! Free your conscience of the guilt, anger, and lies so you can love like you have never loved before! It so fun to live life and love everyone with no conditions!

My Father figure is a heavenly man that only some have heard of through stories……….He is the Ultimate Daddy; and I share!

Hello world!

I’ve been in the blogging world for awhile but it was @ http://www.ricknvon.blogspot.com. I’m looking forward to a new community of blogs, readers, etc. Hello everybody…….I’m hoping to find what I’m looking for on WordPress…….we’ll see.

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!