I believe

I believe we are the authors of our life story; there is no other that can write it and I can honestly say- it’s one of the few that no one truly knows the ending until it happens. We can think we understand why each thing is happening at the moment or as they pass us by but we don’t definitively know what is truly taking place. Our life story is something of which we can’t plan out or else it becomes moments that are planned and not life at all but a series of things we expect to happen and want to happen and we don’t even see the reality until much later.

A year ago a lot of things were going on at this time of the year but also they were hitting me at tons of different angles. Through my friends, through my family- twinges of pain and trying to understand. I want you to see some excerpts of this- going from October of 2007 to recent months to around exactly a year ago.

October:
friend:
We had practice that night. She was sick and I was worried. She was getting worse and I couldn’t focus on what I was supposed to be doing. I don’t think the fact that the night was extremely stressful helped the situation at all…

Rehearsal ended. She was in a daze.

We got to the area in front of the senior cafeteria. I told her she needed to sit down, but instead she was leaning on me and all of a sudden all of her weight was on me.

I kept saying, “Vic… Victoria…”
No response.
She started to shake… She was having a seizure.

Oh, my God… Oh shit… Oh SHIT!... Get her down on the ground… be careful – don’t let her slam her head on the ground… Holy shit…

My mom’s yelling at me from across the cafeteria, “What’s going on?! What are you doing?!”
With wide eyes and through clenched teeth I told her, “She’s having a seizure!... Somebody needs to call an ambulance…”

I’d never felt so useless in my life. For a while I was kneeling next to her, stroking her hair or rubbing her arms. What else could I do? Once one of the band moms came over to check some things on her, I started pacing. I felt useless. There was nothing else I could do.

Hang in there, Vic.
You’re strong.
You can do this.
I’m here for you.

I’d stop and look on – this was too real. Never had I imagined…
More pacing.
Band moms were coming over and asking me if I was okay. They kept reassuring me: She’ll be okay, you know. They were worried about me as well.

I kept pacing. I just kept nodding my head.

Well I KNOW she’ll be okay – but at the moment, she’s kinda NOT.
YES, I’m okay… I think…

But I felt tears welling up, threatening to escape.

You can’t cry. You can be strong for this. Everything will be okay. It may not

seem okay now, but it will be, and you know it. Don’t cry. You’re not the

one who needs the attention right now. She does. You can’t cry.

She’s the one who needs the help… not you. You don’t need the attention

right now. She does. You can’t cry.

And I didn’t… at least until she left in the ambulance. Once she left, I guess no one could believe how calm I was through the whole thing. While me and my mom started walking toward the car, I couldn’t do anything else. It call came out. I was such a wreck that night. I cried. A lot.

At that point, I didn’t need a message sent to me the next day telling me what happened the night before. I was there. I was right there.

Photos are always intense. I have not done a photo slide show in awhile but as we reached a year of my port being placed and a year of my gall bladder removed some photos stood out looking through the file.

February:

Sometimes silence is golden, other times silence can be used as torture. The silence I think of is not silence at all but the whooshing and whirring of machines working their job. Sometimes people say that silence can be peaceful but I almost wish some noise tonight.

March:

Dear Mom,

These last few years have been extremely tough on you and the whole family as we try to understand what this horrible disease is and what I have in store for me. You've been a simply amazing mother, friend, provider, and spouse to Megan, dad and I. I am touched by how much you care about me and how selfless you are when it comes to the care you have to provide for me or get for me.

As I grow older I not only learn more about you and your character but I am also able to discern more about life and myself in general. You have absolute acceptance of me and you're one of the few that are able to look past the many complications that this disease has handed me. You have also shown me what it takes to love a family unconditionally and how selfless a mother must be when others are in need. Whether it is towards myself or another person that you have come in contact with. Over time you have taught me that giving to others is the best gift of all and that you shouldn’t condemn others of their shortcomings but listen to them and help them become a better person.

Thank you foremost for not only being my mother but also for the people that you have brought into my life through having you in my life. You have most definitely blessed my life in an immeasurable way and helped mold me to become the person I am today. Without you blessing my life I know that I would not be nearly as good of a person and I would probably be less confident and I wouldn’t be able to tolerate as much. When people say I am a good person I have a few people to thank for getting me to the place I am today and for giving me the insight and knowledge that I have and you are most definitely one of those people. I think the thing that I admire most about you is your ability to offer kindness to every person that walks into your life and that you can go out of your way to help someone even if you’re running late or have other plans to do that day. I will never forget the day that you stopped to take a lady from church to the mall from the bank even though we ourselves were running late to a doctor’s appointment. Your selfless approach on life is definitely something that I feel you should be noticed for and should be given acknowledgement for. Thank you so much for gracing my life with your presence and loving me unconditionally.

I want to say I love you. I can only hope that I have imparted a fraction of the love, warmth and camaraderie you have extended to me. A mere “thank you” doesn’t cut it, but thank you anyway.

Love,

Victoria

Almost exactly a year ago to date:

The fear of a child is felt by all and the joy and content of a child is considered by all. If you could remove the pain of a hurting child you would do it instantly, sometimes however it takes a few Popsicles to make the pain a little less tender. A scared little girl with removed IV can quickly turn into a chick watching TV. :)

Today:
Today I think back to these moments I am amazed with how far I have come. I am faced with new things new thoughts and new obstacles but nothing too hard to overcome. I am looking head on to a moving train getting ready to step aside and hop on. Not let this ride pass me by because sometimes baby you gotta do the locomotion! C'mon baby do the loco-motion. I don't think you'll like it, we just have to chance it. I don't want my baby sister doin' it with ease... Getting of the ride now. So C'mon C'mon lets swing these tests and rock these tracks and see if we can't get home with ease. C'mon C'mon the ride will stop now.

Update.

I wanted to update, I have so many mixed emotions about what is going on it isn't even anything concrete. There is not one emotion stronger than any other. I could write about dancing through a storm that is larger than I, or I could write about how I am so excited to see graduation day come and how exhilarating I can imagine the moment of walking across the stage. However I feel things need explanation. Clarification if you will... I wish I had more but I will share what I have, for I this is all I can do.

Tuesday, March 24th I went to the ER with bluish hands and shaking. I felt as though I could not get warm and things were well on their way of heading south. That evening I had a small seizure upon getting to triage after waiting around 2 hours to get to triage. That evening we could not find our thermometer so we had them take my temperature upon arrival to the hospital and it was around 98 by the time we reached triage it had raised significantly. I cannot give an exact number. It was also this night I had a scare with pneumonia in my left lung. There was significant shadowing on my left lung that caused them to believe there was fluid. I also had a fever and I was very drowsy. Two doctors felt I had pneumonia. I became very drowsy in the ER and ended up getting tired enough to sleep and not arouse to anyone even through multiple blood draws and blood cultures. I remember nothing after I fell asleep. I was wiped out. They decided to admit me after taking the blood cultures and since I was not awake.

That week from the 24th to date I have had three more blood cultures. The original blood culture was felt to be contaminated but was positive with coagulase negative staphylococcus and Granulicatella Adiacens both bacterium were growing upon the reading of my cultures. It was a collaborative decision between a infectious disease doctor as well as my PCP to start Vacomycin by Wednesday or Thursday. By the weekend of the 28th, our prom weekend they had decided to discontinue Rocephine or Ceftriaxone. Due to the continuation of fevers they wanted to be sure that they were not drug induced fevers. This confused me until I understood what was going on a little more. The infectious disease doctor consulted with us again to explain what his views on everything were and 1 in 4 patients that he has seen are able to get over this within the 2 week course of Vacomycin. In some cases however, the patient has not been able to get over this hump in that case the port, of which they have now figured to be infected due to certain cultures that have been taken- may not be able to be brought back to sterile. In these cases it results in removal of the port.

My Primary Care Physician stated he felt that my port would have to be removed due to the circumstances and explaining things such as the immune complex along with the fact that plastic has no fighter cells to get rid of infection upon settling in a device such as my port. When my Primary Care Physician met with us I asked many questions including questions about the bacteria and why I would have gotten the infection. He considered this and said among many things it could just be because of all of the pokes that I had received or just a simple cut somewhere. It is very easy to get bacteria into the bloodstream. With all things considering and having my port for a year we were told the risks and benefits of removing the port immediately (April 1st). I asked him to wait until Monday- so we could discuss the thoughts as well as wait for the latest blood culture to see if there were any changes. He said he felt this was a good decision and he would support it. Since I have continued to have high fevers and extreme chills mostly at night and sometimes during the day. We feel a persistent infection is in my port and it will have to be removed. He said chances are the infection is still there. Where the heart has come in, is that the port is in my chest and near my heart. In some cases a heart valve can become infected so they have ordered echo cardiograms to check out my chest cavity to make sure we're covering all of our bases.

What does all of this basically mean? I will need two surgeries that will remove the infected port and insert a new port. Once this happens I should be back onto my road with recovery.

Along this road of sickness I have lost my ability to walk. The sensation in my legs is slowly being lost and my feet are not working properly. I have been working with physical therapy and I believe that I will be okay it is just going to take some working out to get them back to normal. I don't understand what goes on with my legs but I do believe they are always the first to go. I have also experienced some incontinence which is both embarrassing and quite stressful for me. However, this is just a stage in the grand scheme of things and I believe it will be fine.

As far as school- it honestly hasn't crossed my mind until today. I can honestly say I have not picked up my physics book and have not tried to sleep with my American History book to process the information through osmosis. That is for a later date. I have been trying to keep in touch with the teachers I currently have especially my physics teacher because I am not so sure it will be easy to catch back up in that class. However he seems to be confident that he will be able to help me. College is another thought and I have considered taking a year off because with the financial burden and the physical burden I am quite weary of setting foot in that scene if I cannot afford it in any way shape or form anyways. It breaks my heart to consider that yet it seems to be reality at the moment.

I also wanted to go through some basic vocabulary right now that could through some for a ringer:

Port: A port is a small device usually made of silicone or plastic that is surgically implanted beneath the skins surface and connected to an artery that leads directly to your heart.

PCP: Primary Care Physician

Blood Culture: A blood test that is done when serious infection is suspected. It can identify bacteria or fungi that are spreading through the bloodstream. (http://www.thegooddoctor1.com/glossary.html#B)

Coagulase Negative Staphylococcus: Basically is a bacteria in the bloodstream that carries many anti-bodies. It can become severe but is not deadly and is carried within every-one's skin, just like everything- too much of this can be a bad thing.

Graulicatella Adiacens: Also a bacteria within the bloodstream common among prothstetics such as my port. This bacteria is commonly associated with things such as ports or any other sort of prothstetic.

Rocephine (Ceftriaxone) and Vacomycin: Both antibiotics used to treat infection. We have been using Rocephine for the Lyme disease both are IV antibiotics and have been being administered through my port.

If you have any questions please direct them to me I will attempt to answer them. I do not understand everything that is going on at this moment but this is what I understand.

As many of you know tomorrow is Sunday and is church. Next weekend is Easter and I would really love to be at the service and worship with everyone it is looking as though it could be cutting it close getting this all to fit in one week and being healthy enough to make it to church by Easter. This is something I will cross next weekend. However, my admissions counselor shared this song saying it reminded her of my situation. As I listened to it again, it really hit me. He really has never let go of me through the calm and through the storm... The song is You Never Let Go.

There will be an end to these troubles... I can see a light that is commin'!

God's timing is perfect. This is not his disease but I am his work.

(Please ignore the grammar and if it doesn't make sense at times- I am very tired but I wanted to update with the information I had.)

Birthday.

Today I am turning 18. So in honor of my 18th year of life I would like to put 18 random facts about myself up because it seems that this is a popular thing to do.

- God is top priority in my life and my drive is given a lot by the force of my faith. I love God with all of my heart and I can't see it any other way. My faith has gotten a lot stronger over the past few years and I have gotten so I can't stand missing church.

- In most of my childhood photos I am dressed up as something either dressing to look like a certain era, or just dressed up and being a ham. I have lots of photos from when I am younger and in all of them I am doing something abnormal. I kind of wonder if I have any that I just smile normal in.

- I absolutely hate starting a new doctor. I hate going there and I hate having them not know anything about me. It stresses me out because I always feel like I am forgetting something.

- Turing 18 is the first age I have felt stressed about turning. I don't want to be 18 for a number of reasons but one being that I won't be a real kid anymore and the bank already sent me a letter saying I was eligible for a new type of bank account.

- I used to be obsessed with keeping my room clean now, I lack motivation to clean my room...

- Painting is my biggest relaxation technique and it calms me down. I haven't found anything else I enjoy doing more- however writing is a close second.

- I absolutely hate crumbs in my bed and will do anything to avoid them even if it means demanding foot washing or changing my sheets at midnight. I need things to be in order.

- Traveling is an awesome thing to do, as long as you're not going to doctors appointments. I hate doctors appointment traveling however I have been out of the country twice to Taiwan and Ireland and I loved it. I hope to go back to Europe again some day. It was beautiful. Taiwan however, not so much but who knows what the future holds.

- I like order and schedule. I would rather have mapped out days and such than a bunch of chaos. I like to know what I am doing in a week advance if it's possible, although many plans don't stick or they fall through last minute.

- Watching the snow fall is one of my favorite activities and I would do it all day if I could, color and watch the snow fall. It's a silent act that's really mesmerizing, thus why I am worried about driving in winter weather.

- When I was younger I used to tell everyone I was going to be a baby doctor. I loved babies and I still do. I find small children to be an amazing thing since we all start as a single cell. The complexity of our minds and everything baffles me. Now at least 14 years later, I am still considering the medical field and I love people.

- Now I see the brain as one of the most interesting things in the body. I can't see it as anything other than something I wonder if we will ever fully understand.

- One of my biggest motivators is my grandmother she was a wonderful woman and I can't imagine what life would be like if I had never met her. She always made me think I could do anything I put my mind to and put a lot of faith in me. She even used to let me cook and peel potatoes and do anything I could to help in the kitchen even if it meant taking a little longer to teach me and watching me cut my finger and learn things the hard way. She never was too busy. I hope if anything I can take the compassion and her love for God, and people and her pace back to my own life.

- I live for the moments I can step out of my comfort zone and overcome something or make myself a better person from an experience. Even just speaking up when I am nervous. However, I think there is a limit that should be put to these moments or else it becomes even more stressful.

- I really am amazed by God and the way he works in people. I think that is awesome and I always am interested to see what his plan is next. I don't agree with his plan 100% of the time and if I was God sometimes I think I would never want anyone to die... However I feel that some of my biggest spiritual growth was when I was hanging on by a thread. Plain and simple God to me is the best thing that ever happened to me and I am in love with him.

- My favorite years of my life were the years spent in elementary school. I loved the wonder I had then and I try to tune back in with that wonder from time to time. I love simple things and I can sit for hours enjoying little things rather than big complex things.

- I am really reliant on my computer and all of the data it stores. I am concerned about how much I use my computer and I kind of hope that I can start to work away from that by the time I turn 19. Hopefully this will be something I fixed over the course of a year. I don't want to adjust to my reliance of the computer though.

- I dislike people who find it their job to be negative. I am all about cheering people up, however I also believe that you have a time that you can be negative but I don't like it if you think it's okay to stay that way for a long time. It really bothers me and I will do anything in my power to let you know I still care about you. I really do love people and I will do my best to give you my undivided attention. If you don't feel like I am giving it to you, you can call me- if I am distracted then, then you know something is wrong with me. I don't usually pick my phone up unless I am ready to talk.

Bonus- One year as a birthday gift.. My twin cousins were born on my birthday. Although at the time I wasn't sure if I was completely thrilled about sharing the date, I absolutely love sharing my birthday with them now. These two little girls are splendid and I love their zest for life and their sweet personalities. Below is a photo of them and their older sister and I the day of my testimony.

Today is my 18th year of life. I am thankful for this year and I am so thankful for the 17th year where I learned a lot about myself. I feel like every year I grow older I am a little more in tune with myself. I am so glad that I have been able to get into my skin and wear out my body a little more this year and I am thankful for everyone in my life. As a birthday present to me- lurkers de-lurk. If you are a reader who has come for awhile and you don't comment, comment. I would love to hear from you! Dad, this means you. :) So to all of the February 4th birthday's Happy Birthday!

Now just for fun because I thought it would be here is my year in review in words- Things that only happen once and happened while I was 17.

Sister moved out and then moved to her own apartment- First steady boyfriend- First surf competition- First time I swam from our cottage to elephant rock, not only facing my fears of seaweed and dark water but also swimming a great amount still being sick and never doing it before- First kiss- First annual Lyme Walk was started by Sarah and I- First time I ever had a problem with chloraprep- First surgery- First time going to camp since I got sick- First small group setting this summer, loved it so much I have a deep passion for making it to my small group at church because I love the setting and the people we have in it.- First time sharing my testimony to others and finding out how much others could care about me. It was an awesome experience and I wouldn't trade it for the world.- First youth pastor I really connected with moved away- Got accepted to my first college- Tackled my fear of public speaking and never looked back.- Found that with God, anything is possible and have learned to pray about everything, still working on the worry about nothing part.- Met one of my cousins who is 30 something for the first time and learned a lot about fishing. I think it's in our blood- Submitted my art and writing to the first contests ever and earned honorable mention on my art, still haven't heard anything about my writing.- Went to my first and maybe only prom I will ever go to- Met my first band in person.- Found my true passion for people and started a lot of things like a Lyme Christmas program and now we're starting a local 501(c)3 program that will be non-profit and can raise money for local activities.

That is my year of firsts and only moments. I am sure there are many more. Celebrate with me, I would love to share cake with you and your family. Go ahead make a cake in honor of the day I turn 18 and share some sugary delight with me! Festivities begin this weekend with a little party this weekend, nothing big just something. (note- if you share cake make sure you let me know so I can see a picture!)

Smiling from the inside out.

Today has been interesting, well this whole week has been kind of side swiping me. I don't know what to think but I have really kind of been happy today. For the most part anyways. I have found that I continue to find good in others and I just really love people so much. I mean I have really found a lot of places I need to work on but I am just really happy because I feel like right now in my life I am really connected with my core and who I am.

I just really find life exciting no matter what happens because we just have so much going on and then just to see the lives of others and how they are changing. I just can't explain how things have changed over the last few weeks but they have. I miss things that used to be constants for me, like hanging out with friends and the people I hung out with but it's comforting knowing they're still there- they just don't keep in touch as much sometimes... I have also started committing to reading at least one verse of the bible every night no matter how tired I am. I even started liking it so much that there is an alarm set on my phone to do so. I am doing it with a friend from church and he's a really neat kid. I like how he thinks so different from me so that we can discuss things and it is just really interesting.

I have seen how much my faith has changed my life even within the last year... I mean I don't feel like I would be anywhere without that to hold on to. My focus has moved away from man and more to God, it's interesting how that works but with reading the bible I have also found that it helps reinforce things I think. (Psalm 146:2&4- Do not put your trust in princes, in mortal men, who cannot save. When their spirit departs, they return to the ground; on that very day their plans come to nothing.) The scripture spoke a lot to me not only about putting trust in man but also about planning, I mean it basically says our plans come to nothing the day we die. Yet we live in structured society of which says plans must be made, I am not always for living in the moment however how often can we say we trust God with our future? So much that we don't even give it a second thought to talk about it with God?

I am just thinking a lot tonight about so much, I have so much to be thankful for yet there are things that I wish I had back. Things I miss things I desire... I miss my friends most of all and it's hard to think of anything else that I wish I could have back. I really just wonder if they miss me as much as I do them... I also miss the liberties of going out and having fun and living life as a normal teen, like staying out late and not being told that I have medications to take or an IV to do. I guess some things I don't think I will ever get as much, even just a shower today- I had a shower without the needle of my port in and it felt so good... I sometimes wonder if I ever realized how much effort it took to walk or how a shower could feel so absolutely amazing. I almost think you should get the experience of being stuck constantly in a wheelchair or not being able to wash and see how much you can experience and how it feels because it really does give me a whole new perspective.

I don't know where I will be tomorrow or ten years from now, but tonight I am a teenager living a sick persons life and I am ready to go running through the finish line and be done and look back at a race that I can look back and say. Ran hard, Sweat lots, Gave it my all, and Won.

I hope every week from here on out I can find at least one thing to be really thankful for like down in my heart thankful for. This week I am thankful for love of others... I think I will update tomorrow with a post on some other events in my life that just amplify the emotion of love.

Home, Hopeful, and feeling a tad bit better!

After the last post I wasn't feeling too great so I didn't want to post again for a bit until I knew I was okay and what was going on. I am pretty sure I have been fighting something viral as well as the herxing from the new IV antibiotics. So it has been a little intense here at the house and who knows what still lies ahead but I have been doing my IV at home and got my port needle changed this week for the first time and now that will be weekly as well as antibiotics IV daily. Along with everything else that I was taking before.

I know the medical stuff to some is a little redundant or kinda boring but for the last 3 weeks it has kind of taken over my life. I have been feeling so crappy some nights sleeping isn't an option till around 1 or 2 in the morning and some nights even 3 am! So it has been a struggle to get my thoughts on other things, like my 18th birthday and college. I just got accepted to a college near home, Roberts Wesleyan and it would be enough away from home that I wouldn't be in my backyard but coming home wouldn't be an issue either. I can't wait to hear from the other college I applied to and start to decide about things like that! Ha. So basically I am just going on and trying to figure out what can be done and what is left to do to make sure I am able to graduate in June.

I also am excited about going to church tomorrow and getting back to youth group after 2 weeks of missing it...

It seems as though I am in for a ride and need to hold on tight but after this week I don't doubt that anything is impossible, through Christ who strengthens me.

Hello

Hi all it's Victoria and for the first time in awhile I am posting. I am still in the hospital and even on high doses of pain medication I am really feeling the pain. Today Physical Therapy comes in to analyze and try to figure out the situation. My strength comes and goes and I continue to fight. I am overwhelmed with how horrible I feel and how weak I have been. I wish I could write today with a warm fuzzy feeling of good health and happiness but it doesn't seem that way. Today the meeting with my PCP was basically you have lots of nerve damage, very bad nerve damage. We're now looking at things such as walking being an obstacle that may be the hardest it has ever been to get back. I have demanded new blood tests and other takes on the situations. I am searching for second and third opinions and we're going with all we can. Right now my energy has been used to be getting better, seeking hope and meeting half way with God.

Last night was an extremely taxing and overwhelming night on me. I had a lot running through my mind and laid listening to sermons from other churches on my friend's ipod. I have never felt more in tune with God and yet so out of sync. Things have been hectic and it's crazy just sitting here typing this and gathering my thoughts. It has almost been a week and in that week I have bounced from telemetry to ICU to now pediatrics. My 18th birthday comes February 4th and it feels like the last 4 years of my life now are all a blur. It's so amazing how things can come and how fast a rug can be pulled out from under you. I ask you for prayer and discernment. This road is going to be long and right now it's taking a lot of strength just to hold my head up. Yesterday, standing up I passed out in my nurses arms even going slow. I am going to continue to have Sarah blogging for me as much as she can because I will not have my laptop and my strength is still not high enough to continue blogging although I feel this is crucial to keep updated. For my own personal reference, and my family. I thank all of you for your prayers it humbles me all of the compassion that has poured out.

Right now I am searching for treatment and doctors and everything else. My heart breaks as I almost made it to half way through my Senior year and now I am at a stand-still. I am so heart-broken. Your kind messages mean the world to me and now I am just waiting. This post has taken me so long to write and I have a feeling it may be awhile before I can post again but I want to sincerely thank you for all you have done. Right now medical bills are through the roof the treatments that may be ahead will probably be even more expensive if it's anything that we have been thinking about. I am so overwhelmed with what is going on and to be honest I am heart broken about it all.



Please continue to pray and keep me in your thoughts. I hope some day I will be able to say this disease helped me touch the lives of others. But today it feels like I am walking on broken glass. My guess is that Sarah will continue to post as she can and her time permits. Those of you who participated in Lyme Christmas I hope you got thank you cards if you didn't from me that's because they're on my desk and no one has mailed them for me yet. If you got gifts- please make sure you sent out thank you cards and I thank everyone who was a part of that from the complete and absolute bottom of my heart. It means the world to me and I am so thankful for your kindness. I am hoping to start a thing with Lyme teens to boost spirits because to be absolutely honest- mine have been in the dumpster... I have never felt so upset and alone as I have this hospital stay. It has really taxed my spirits and how to get on with life. Thoughts of college have been diminished and everything I have been really hoping for has been kind of put on hold. So continue to pray updates will be as they can be and hopefully home will be soon but looks like it might be awhile.

Thank you all for your encouragement.

Victoria

2008 in photos

2008 brought many things both new, old and otherwise- here is a photo for every month for the year of 2008. I am sad to see it go but ready for all of the new beginnings that are yet to unfold. Happy New Year! May this New Year bring all of you a new beginning and health and happiness to you and your loved ones.

Who needs realistic?

James 1:2-4: Consider it pure joy, my brothers, whenever you face trials of any kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.

An open coat with a scarf and newly fallen snow- closing the new year out with a bang! I don't need realistic, I don't need pain! I am free from everything that holds me down because I am choosing my mindset an hour early, I am going to be free this new year! No tethers no ties, no cords to hold me down. I will dance in the snow I will spin with all my might, laughing giggling and screaming out my lungs. My motto in the new year?

Lay it on the line- How I live today, is how I will be remembered.

This past year I went from not breathing on my own, bed bound, wheelchair bound, walking with assistance, a walker, a cane, walking, not being able to talk, whispering words that didn't make sense, whispering, talking, laughing again, thinking and smiling and now finally to:

Dancing and spinning in the snow!

Happy New Year everyone!

Here's to freedom of the past and a new beginning. Let your past hold it's name and let it be the past. Open your life to new beginnings and dance in the snow!

disclaimer- I do not go outside in very cold weather without bundling up often.

This is a post where I give thanks.

This past week has been frustrating and full. It has been overwhelming with what is yet to be done and all the people to contact. My days have been full and my nights are full of sleeping hard because I worked so hard all day that it often pulls into the night hours of getting homework done or doing last minute studying. I am just exhausted. I am starting to realize in this time all of the things I have to be thankful for. I mean I am blessed with so many things and so many huge, huge blessings. I have thought a lot and been talking to a lot of people who inspire me or give me encouragement. I am starting to realize that one of my biggest blessings is my faith. My faith in God and my faith that things will get better, my hope that is strong enough that it gives me a will to help others.

Just a few short weeks ago I was burdened with the thought of me being helpful and hopeful to others. I didn't understand how it was helping me or what it was doing, and to be completely honest I had no idea how I had carried through with so many tasks of speaking kindly and why things were turning leaves the way they were. I didn't understand it. So as I was talking to my youth pastor I was saying I don't know how I did it. I was ready to throw in the towel because it seemed every place I turned the corner there was someone to turn to me and rip down my self esteem question what I believed, or divulge me in so many questions. I didn't understand their questioning and I just felt wouldn't it be nice, if I could see things the way God does. I had a hard time with what was going on and I just wanted to show people and let them see things through my eyes. I wish they knew is all I could think, and soon in the days that followed I felt peaceful and now I am feeling a little calmer. It has been hard and it has been heart breaking and the stress of school, doctors appointments, and the scope that have followed have been stressful on me as well. But now more than ever I realize I have so much to be thankful for.

I am blessed with my creativity and thinking outside of the box because without it, I wouldn't have put together my Christmas Wish List for others and this holiday season would have been a little dimmer. Not only for the people who are getting gifts, but for me as well because I have felt great joy just hearing of their happiness and content. Letting them know that people do care and have found it in their hearts to take the time to send them a package. I am so glad I came up with that idea.

I also have found that even though I don't understand things or even if it is really confusing- that things have a way of becoming clearer. I don't really get a lot that happens and when I do get it a new meaning surfaces later on. Yet, it has been something I am learning it's okay. I am so very grateful for the gifts I have received in the mail already, I have tried to encourage others to buy for the Lymies on my wish list if they can- ignoring my wants and reaching out to others. Just because I feel like it would be a three way gift and benefit all parties involved. I am very thankful for everyone who has contributed to the Lymie Christmas this year.

I am also thankful for the things like my sight, my ability to walk, talk and have an opinion that counts. I am thankful that I am heard. It is so heartbreaking for me to look into other countries and see how women are treated and this year I have seen so many things change in our country in the vision of women and the views of so many other things that I am thankful that I am here. I am glad that I have had "character building" experiences whatever they may have been they have shaped me and changed me for the better. This is just one of those posts that I want to say thank you, thank you for reading, praying, thinking of me when times are tough and sharing your story and walking along side me in this path that we call life. I appreciate it, and I hope that I will be back to posting more frequently this upcoming week- however, if I am not- I wish you and your family a very Merry Christmas and a Healthy and Happy New Year. Christ is really the reason for the season this year and I hope knowing there is something more to life that you find peace above all else, this holiday season and in the upcoming new year- through the financial burden that has been placed upon so many homes.

Good Morning!

Off to a busy day at school but stopping by to leave my mark first. I just wanted to say I am forever thankful for those who have stopped by to give me love and encouragement. In the days that have past and the days that are soon to come your encouragement means the world to me. I am so happy that I am part of the blogosphere- something big and to find so many nice families and people out there. When I ask for help I have received it in tenfold. I have been very interested in opinions and actions of all sorts.

Today I ask a personal opinion. An experience or a thought. I am doing a photography project and I am doing it on the social- cultural issues abortion. I am pro-life and believe that all babies should be given an opportunity at life. So I ask you what comes to mind when you think of pro-life I am trying to get opinions and views of every aspect. One thing that has stuck out in my mind is the thought- One dead, One wounded. If you think about it, it is just that the mother will never be the same after aborting her baby. She is wounded, even if she ignores those feelings for awhile they can come back. She is wounded. This is such a tough society to live in when it comes to these standards. I don't think they have ever really lightened up but now the news is filled with these things and it seems people so young are making life changing decisions. Another that I came up with is The decision my parents made for me, has left me feeling incomplete. All I can think is of the aching girls who yes, made a wrong decision. They have screwed up- but I have screwed up before too and their parents forced them to have an abortion because it was too much to handle. If you don't think it's possible- start reading abortion stories. I have read a lot of them and started doing research and it has been intense, heartbreaking, and moving to read the stories of faces behind this issue.

So I ask, do you have an opinion on pro-life? Do you have a short one sentence profound statement? And do I have permission to use it on my project if I choose to?

Thanks, and remember 1 in 10 couples are infertile- chances are someone you know or love is infertile and would make a great parent.

Today I am thankful for my chance at life and my chance to screw up and make mistakes and learn.

Twas the first day of Christmas...

This season has been everything but peaceful! I have been busy every night of the week and holding on by my pant legs to get everything caught up. Dot my i's and cross my t's! Packages were to be sent homework stacked high as I missed each day I missed. I am sorry for my lack of updates. Last week was difficult and this week will be a race of the fittest to see how much back work I can make up in 5 days. Complete with a photography photo shoot and a bunch of other stuff. I hope to slow down next week when we have off school and I can make priorities and finish portfolio work for college. I have a self portrait to get done and my still life to finish! Plus studying for multiple tests and working my butt off.

I come to you with even more prayer. I have a good friend Meghan Marks that her family's house burnt down this past weekend. I feel so bad and am a wreck about it. Their family has been nothing but good. Her mother also has Lyme disease and she is a wonderful girl. I am trying to think of what I can do for this family. My heart breaks for them as they enter the holiday season with little money to be found. All of the members of the family made it out of the house safely and now we're working on making the holiday a little brighter and hopefully coming together as a community. I am thinking about "selling" one of my paintings to honor this family like you buy chances for $3 and get it. Above is a sample of my paintings. Each painting of mine comes with a story and I would post a photo then it would go for around a month or so. If someone has ever done something like this and would be able to give me some insight. I am hoping to help their family. Another hardship to overcome! Prayers are appreciated.

Victoria

Crying out

We have some clues and we're moving to answers. Tonight I am so weak I feel so tired and I don't feel like it's going to be a easy road ahead. I feel like someone just beat me all over with a bat put me in a sound magnified room with bright lights shining all over. I am weak and I just want to cry out to scream. This disease is horrible and I hope that some day I can stand with triumph over what it has done to me. I am so eager to make others lives better to save them and show them they can prevent what has happened to me. I wish this upon no one. My heart goes out to those who suffer and I fall to my knees and pray. Oh please join me in prayer as I feel my body weaken and my hot tears trickle down my face. This doesn't seem humane.

Superior Scribbler Award

It was a great honor to receive the Superior Scribbler Award from Renee at Renee's Reflections. She is an awesome woman and I am surprised and honored to receive this award.Here are the rules for the blog:

• Each Superior Scribbler must in turn pass The Award on to 5 most-deserving Bloggy Friends.


• Each Superior Scribbler must link to the author & the name of the blog from whom he/she has received The Award.


• Each Superior Scribbler must display The Award on his/her blog, and link to This Post, which explains The Award.


• Each Blogger who wins The Superior Scribbler Award must visit this post and add his/her name to the Mr. Linky List.
  

That way, we'll be able to keep up-to-date on everyone who receives This Prestigious Honor! Each Superior Scribbler must post these rules on his/her blog. Superior Scribblers I know?Check them out below:

Kelsey at K is... Not your Average Girl Kelsey is well, fantastic. She is a lot like me in many ways and she has inspired me. She gives me hope because of her wonderful attitude and compassion towards others. She is a really good writer and I think she is well deserving.

Tori at Breathings Of My Heart This blog is lovely. I absolutely love going there her blog is fantastic and wonderfully written.

Bouf Mom at Who Says 8 is Enough? A loving mother who not only has 9 wonderful children but also a wonderful lady all around who has shared her journey of parenting a large family and helps others by giving back to other families. She inspires me so much.

Carson's mom at SANITY This blog pulls at my heart strings. She is such a wonderful mom and her love is so apparent through her writing. The family's story just makes me cry, smile, laugh, and pray. If you would like to help this dear little girl Carson, please check out a great thing going on here.

Kimber at Kimber's Space This lovely mom is fantastic and she has awesome Not Me Monday's I enjoy reading her blog and the different things she brings to the blogging world. I also feel so special and happy when I receive a comment from her. She's an awesome person.

These people are so awesome and they all add a different spirit and piece to the blogging world bringing color and sweet little sentiments. Thanks for visiting and a little later I will be posting an update.

I have complete faith this holiday season.

As I was reading Kelsey's blog or K's blog I realized I am putting my 100% faith in God this holiday season and as I apply to college this year. If I don't get into my colleges I plan on getting into then that's not what I am meant to do. Not yet. My calling is here close to home with the support of friends and family and I will be going to CCC with some other kids from school. I was watching this movie and listening to the lyrics it really hit me. The song is "Rescued Nation" by Holyfire.

I would like to spot-light a very special person close to my heart today.

Lucy, She is a fellow "Lymie" and I have really loved our friendship. I am amazed by her strength and courage. Even though we go through rough patches I know she will continue to be herself. She is true she isn't afraid of showing her reality and her soul. I am so amazed by her and there is just something about her spirit that amazes me. I haven't talked to her as much lately but my amazement and prayers have not changed. She is such an awesome young lady. I am so thankful that I have people like her in my life to say hey, it's not so bad or keep on fighting you dork you're not going to get better by complaining! She isn't that harsh promise. But she is always encouraging me to go against the grain and try new things or say enough is enough. She is bold and beautiful. She shares a passion of painting with me and I am lucky to own one of her originals. She is an awesome girl and has an amazing spirit. Thank you for being my friend Lucy. You absolutely rock.

P.S. I am trying something new out today- I scheduled this blog to post tomorrow! :) How cool.

Giving it all to you.

So I went back to school today first time back in about 3 weeks or so. It was really nice to be back to school. I love going back and seeing people I love them in all their germs and glory even if it does mean working and losing more strength and energy than the other kids I attend school with. Even if they can't relate I just love going to school... It is the biggest challenge and the greatest reward it makes me tired and weary and it makes me feel rusty and old but it's the greatest thing seeing people seeing happiness seeing struggle. Seeing other people my age. I wouldn't change my day at school even if it does leave me worn out. God gives me a body to use not to preserve. Tonight I just am really happy to be here and I wanted to just write about something that laid heavy on my heart tonight.

Don't take the time you have here for granted, don't take the relationships you have here for your personal use. For before too long the days that were seeming so long will quickly slip between your finger tips. Yeah, hours will turn to minutes days to hours and before you know it your life will be quickly fading away. I don't know what to say other than I am so glad that you're here now and today. I am so thankful for so many people and for the next while I am going to be spot-lighting again.

Tonight my Spot- light is on my dad.

My dad is a guy of few words, or many and he can really make me think. Sometimes I don't really get what he's saying and sometimes he gets me really confused. But one thing I know for sure, is that he loves me. It might be confusing at times but I know that he has been there at the hospital when I have had to go in he has been there listening to my cries call out and I know he will be there any day I am on unconscious. My dad is a person I look up to- he lost his father at about this age and I cannot even imagine the pain or suffering that causes. I can guess or try to think of it but I will never really know. He showed strength he emptied bed pans and helped out around the house he was the youngest he was strong willed. I think he holds a lot of his mother within his heart. He is good to others, he shows compassion to others, and he has a strong spirit. My grandmother is one of my biggest role models today. I am so glad I practically lived at her house growing up and I am so thankful my parents blessed me with that time with her. I remember distinctly a night, my dad asked me if I wanted to go to the babysitters or his mothers the next day- knowing I would get to see other kids my age I said the babysitters and I remember him getting mad at me. I didn't understand why he was mad but now, looking back upon it I know something I didn't know then. Time is limited time is not bought and time is not a gift, our days here are numbered and I should handle them as though they are something wonderful because that it truly is. The days I spent wasting away hours I wish I could have learned more from people like her. It just reminds me there is so much still yet to learn especially from my elders. I can't thank my dad enough for being at my bedside for holding my hand for giving me a stern word or two and showing his way through. I am really glad my dad is my dad and I wouldn't trade him for the world. He has instilled a taste of music within me and he has shown me that with a little courage I can do absolutely anything. He will put his job on the line to be with his family and he has surrendered all he has. I guess, sometimes we're blind to these things but he taught me one thing for sure I know that the all mighty dollar does not come over relationship. Never will and never should. I am so very blessed with the people in my life especially my dad. He is a wonderful man he really is. So dad, here's to you, thanks. You're really great and all the nice comments you read on here, yeah dad that's to you too because you raised me with a stern tone and a pat on the back. I am so every thankful for you dad.

Giving Back

This Christmas I have strongly focused on giving back to people. Every day for advent I am doing something special for someone in my community. I decided that the Christmas holiday is a very important holiday to feel loved, to know that people care. I know that may sound corny but some people feel like no one does care and I think we all go through those days.

This holiday season, if you don't have a charity to give to or are looking for a way to give back- I would like to encourage you to buy a Lyme disease afflicted teen a gift. If you're new to my blog, I want you to know that I don't ask for money constantly and I don't push too much charity stuff for Lyme. But as I have seen some of my friends that are sick with this horrible disease it has strongly broken my heart. I am giving to a lot of different other sick kids this year in hopes to reach out and I encourage you to do the same. Below are bio's of the kids involved. Click here if you would like to get involved in this. I am really hoping I can see the kindness of healthy strangers pull through.

We kept all the wishes under $20 and the only real request I have is that you write a Christmas card out to them with a message. If you think about it, 4 people put in $5 you have enough money and it's only $5 and then if all of those people give a card it's like a shower of cards. You really don't know how much that means to someone who has been sick and rarely gets mail. It really is the thought that counts. Please e-mail me if you would like to buy a gift because I am leaving the wish lists up until Christmas Eve. to keep it a surprise I am not taking down the items that have been granted. However I am not going to keep rambling if you would like more information please e-mail me. If you cannot give this year, I request prayer for all of these wonderful teens who are suffering greatly and all of them are not able to go to school on a regular basis, so I ask for prayer the greatest gift of all.

Each link on the person's name takes you to their wish list.

Alex H.- Alex has been sick since she was 11 years old. She was always healthy. She began having weakness in her left arm and within 9 months she walked her last steps. The weakness traveled from her left arm/left leg/right arm/right leg and then respiratory. In 2 more months she went into respiratory distress and Dr's said she would not survive the night. Alex was airlifted and put on a vent/trach and a g-tube inserted for nutrition. Today, Alex is completely paralyzed unable to move, breathe, eat or talk. However, she understands everything and can slightly move the corner of her mouth to yes questions. She believes someone is going to help figure this out and help her be well again. Alex has an identical twin, Jaci who is healthy. Alex is the only one who has no diagnosis.

Candice M.- I'm Candice, I'm 19, and I've been battling lyme for about 3 years now. I was only diagnosed 7 months ago, so for the first couple of years of my illness I just tried to push through. I went off to college last year, and that's when my body started to push back. I became so ill that I had to drop out and move back home in the middle of the year, and I've been at home struggling ever since. Hopefully the holiday season won't be so bad. I wish all of the lymies out there a happy and healthy holiday (or at least a stable one, that's just what I wish for!). Merry Christmas!

Jeff K.- My name is Jeff. I'm 16, and have had Lyme for 3 1/2 years. After relentless treatment, more needles than any hospital can carry, and unbearable stress and problems, my symptoms have barely let up. I love my parents so much, they've spent nearly their entire fortune just to get me better. Unfortunately that will not last forever.I have severe fatigue, so I can't really do much besides lay around. I listen to a lot of music and play a lot of games...and that's pretty much it.

Kayla P.- I'm Kayla and I just turned 19. I have had Lyme for 5 years now. I love to read, do anything artsy and crafty like beading and drawing, watching movies and listening to music.

Lucy M.- Hi everyone : ] I'm Lucy, I'm 18 years old and have had Lyme for 11 years. One of my favorite things to do is paint.

Makayla B.- Hi, I'm Makayla and I am 18. We believe that I have had Lyme since birth, so I have been battling this disease for a while. But I continue to fight, and am determined to beat this disease!

Sami S.- Hi :) I'm Sami.. I'm seventeen years old.. I've had Lyme disease for the past three years.. I used to play volleyball and basketball before I got sick but now I can't.. I like to spend time with my little dog Lynny and my boyfriend that I've been with for over two years.

Victoria W.- This is my wish list, I am also the creator of this group. I have had Lyme since Summer of 2005. Right now I am home a lot and I have been pretty sick with my stomach and everything else. I have a seizure disorder and nerve problems as well as brain cognitive problems... You can find my full story at http://vicupdates.blogspot.com/ If you have any questions please e-mail me at victoriawilcox7@yahoo.com. This group really isn't about me but about all of the other colorful people who deserve a wonderful holiday season!

World AIDS day

Today has been recognized as World AIDS day and I was interested in this mainly because I just fasted from facebook a popular social networking system for teens and adults now as well. For me personally it was interesting I didn't realize how much I relied on facebook to keep in contact with people from school, church, and people I didn't get to see that frequently. I also found it interesting what other people were "attached" to... Things like secular music, coffee, and soda were among some of the other things given up for 40 days. The idea was then to raise $40 or a dollar a day for Reach 4 Life. I was first introduced to this cause over the summer at NTS camp or Never The Same. We listened to Micah a guy who had been to Africa and talked about the generation gap in the country. There was just a blank gap from the ages like 20-30 where the generation had just died off because of AIDS. I was in shock to think of people just dying like that and then to hear that grandfathers were sleeping with grandchildren thinking they would become cured if they slept with a virgin. It breaks my heart to hear of these stories of people who aren't educated about what is going on in their country. The cause we supported as a youth group promotes purity and abstaining. I am so thankful we live in a country where we are educated and know how to deal with so much. Today I pray for those other countries where there are generation gaps and orphans running the streets, it really breaks my heart.

A Quilt as a Map for my life

I have had so many different experiences that, well I can't really explain in words. I am left awestruck and amazed, in disbelief of how my life has turned out. Sometimes I feel like a wreck and I am scrambling around to pick up the pieces- other days, well- I am just letting the day pass me by, finding what I can and working at what is given.

I guess my eyes have been opened and things are clearer, God is moving in my life in huge ways… I can’t explain it but I know he’s there. It started with a dream about a quilt. It was a powerful dream with vibrant color- the quilt was beautiful and the person who gave it to me was full of energy and excitement. I didn’t see who they were and the gift brought me to tears in my dream. From that night I picked apart the dream and thought about what it could possibly mean. I finally came up with an idea but then that got pushed to sea. I felt even more alone and pushed away that night. Nothing seemed as though it could bring me joy. I was so upset. I didn’t even know what to think- I spent the evening crying and trying to figure out what I should do how to change things what to leave the same. I just really didn’t know. I felt as though my life was on a fast roller coaster and things were completely overwhelming.

The next day after skipping the church service, I arrived to give some people a ride to a service project that I was half dragged into because I felt obliged to do it. So I went and once I arrived at church my youth pastor saw me and he was so happy to see me, he said he had something for me. He said it with such enthusiasm and well, after waiting for months for DVD’s from camp and the retreat I was certain that was what the gift would be. I was kind of proud of him; he finally was getting it done. I was extremely surprised when I followed him into his office to see a bag with a green and orange pattern. My first thought was oh jeez this is some sort of a joke, a clown costume. My mind I noticed was snapping to thoughts as quick as a wink jumping to conclusions. He then pulled out a quilt that he said had been made for me. I was surprised to say the least, speechless. I didn’t feel I was “eligible” for something like this from the shawl ministry because I had received a shawl but- this wasn’t a shawl at all. This was a quilt, I felt honored, humbled, and I was in shock. Who could have made this quilt? Just the night before I was bemused over a quilt and I was feeling selfish and now this one was just set before me. It had been prayed over and it was a gift; I don’t really know who made it, or where it came from, but now this quilt has become one of the biggest gifts I have ever gotten.

That night the quilt offered me just the right amount of heat on a chilly evening and now these days that follow it comes with me all around the house it is my security, it is my tissue for tears, it is now mapping events in my life. I decided with this quilt I wanted to put names on it- to add stories to it and for each square to symbolize what is going on now, and what goes on in the future. So now I am beginning my adventures with this quilt two names have been placed on photos of squares two lives that changed me and as time passes this quilt will have its’ own special scrapbook and a special place in my heart. I don’t know who did this but it has been an act of kindness that has not gone un-noticed. I am so very grateful and I am amazed by their generosity. I am just awestruck by the love of strangers.

Happy Thanksgiving.

There is so much to be thankful for- so much I could list so many things that there are, I can't even begin to name them all. Today I give thanks for life, friends and family. There are so many faces that come to mind when I think of the thanks I give. People from church, friends, anonymous faces of which I only have their actions to hold. Maybe tonight, or tomorrow I will post my reminder and item of thanks this year- I have a story to tell and some photos to post.

Happy Thanksgiving, from our house to yours.

Just a few days till thanksgiving

It's just a few days until thanksgiving and I wanted to say, today I am most thankful for random acts of kindness. Have you ever had a random act of kindness done for you? What was it? What made you happy? I encourage you to do random acts of kindness this year. For my advent December 1st- December 25th I am going to do a random act of kindness every day, giving to others is the best gift you can receive.

Have a wonderful day.