When Nota` sang this song it was all over for me after that… they had already won!  In the finale Jay Sean comes out on stage and surprises them during the reprise… it was A W E S O M E!!!!!!!!!!!!!!!

I am already counting the days until their album.  They have one song on Itunes but this one is by far my favorite… so until it comes to Itunes I will have to keep listening to Youtube!

Nota` boys………. you rocked our world!  You deserved that title, record contract and prize money and we were SO happy to see it go to the right people! If you want to see something funny… you should see Owen singing and dancing to Nota!!!!!!!!!!! I should record it… its a riot trust me!

To the other finalists… The Beelzebubs... just wow. I truly hope that they make some broadway show out of you guys. I would be there in a heartbeat. AND close to my heart… the Voices of Lee from Lee University in Tennessee... these guys go to college at the University which is correlated with the Church of God (cleveland TN). I grew up an Assembly of God / Church of God girl soRecent Comments:

• Danielle says I loved both of the finalists but I really thought it was going to be the Beezlebubs. Ben Folds [more]
• Carla says Faith has kept me sane during many a long dark days of struggle. I have seen many answered prayers, [more]
• M says You have done a amazing job with Ky and you will continue to. I have to say that I [more]
• Stella Johnson says I appreciate the website and information provided. God does send us on a journey that we can handle. IF we [more]
• Tricia says Tough lesson, but once it is internalized, it is much easier to have peace in the midst of life’s struggles. [more]

Random Posts

• November 19, 2009 -- One long week……….
• May 21, 2008 -- Give me a break!
• September 15, 2009 -- September 14-20 is Invisible Illness Week.- Kyleigh’s Version
• August 23, 2009 -- On On U of K.. with FREE Chick-Fil-A
• March 6, 2007 -- Coming Home!!!!!!!!!!!

But… through the the trials in my life, the obstacles, the pains and struggles… I’ve SEEN miracles… just happen.  Silent prayers get answered.  Broken hearts become brand new…………… THAT’S what faith can do.  Yes, I was listening to this song by Kutless and I realized what an anthem this is for my life.

What Faith can do ~ Kutless

Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think its more than you can take
But you are stronger, stronger than you know
Don’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason for someone not to try
Everybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

Overcome the odds
You do have a chance
(That’s what faith can do)
When the world says you can’t
It’ll tell you that you can!

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
That’s what faith can do!
Even if you fall sometimes
You will have the strength to rise

Have you ever been to THAT point in your life when you were SURE that there could be NOTHING worse?  You were positive that there was NO way that your life could be ANY harder and then… it got harder, more stressful, sadder, and another heaping helping was placed on you… yeah THAT place… I’ve been there.  Some days, I am STILL there.  It really is true though that sometimes you have to FACE the clouds to find the silver lining.

You end up in these “messes” and you find yourself floundering to get out.  You cry out for help and sometimes the help comes in a form in which we may not even recognize it.  So what defines US as Christians, from the rest of the world?  WE have faith to carry us through.  WE have a HOPE that NEVER ends… EVEN when the sky is falling.  WE have the ultimate safety net and even though we may fall… sometimes even hard and from a high place, He is there to catch us.

From the outside, it may looks as if we are somehow “cursed” by these “afflictions”… WHY if we are Christians and in the FAVOR of the Lord do we face these horrible things?  Because we are being refined.  When you think of a beautiful piece of blown glass you often times don’t realize what kind of process that glass went through to become that beautifully formed vase you see before you.  That glass was put through the FIRE.  It was twisted and turned, poke and prodded.  Refining that piece of glass and forging it into a piece of artwork was not a dainty process although the end product may be just that.  Delicate, elegant, beautiful.

I think so many times we get caught up in trying to “figure it out”.  Or at least I know I do.  Sometimes though, all He is asking us to do, is to let GO and let HIM do the work that needs to be done.  To allow him to be that glass blower who stick us, his beautiful pieces of artwork in that fire, pulls them out, blows into them the breath of life and send them on their journey as a beautiful finished product.

As you can tell from the last blog posting, its been a down few days.  I had such a great week last week.  I felt great.  I was able to get out and make some coupon runs.  I was able to stay up past 9 pm and actually enjoy watching TV with my husband.  I was able to do the laundry and play with the kids.  To go OUT to eat instead of asking Troy to just run through the drive thru because I was too tired to do anything else.  I made a few trips across town without falling asleep ( yes… I am nearly narcoleptic some days ).  It was wonderful.  I long for more.  I tried not to count how many days I felt good just because that would also mean numbering the days that I don’t and that number… is not one that I want to dwell on.  And then it hit.  I went to get out of bed and had to MAKE myself.  I had to drag my eyelids open and stumble my way to the bathroom ( yes I really do stumble until my CSF flow can be re-established from standing quickly). I tried to drink a mt. dew…. no go.  Put on some upbeat music… nada.  And then Ky was poopy… I went to lift her up onto her changing table… I tried three times to get her up there and finally I had to go get a step stool and let her climb because I physically could NOT lift her body weight up 3 ft to the changing table.  I muddled through that and sat down on the computer to try and get some work done.  Unable to access the server … no go there to.  I felt like going and crawling back into the bed and saying… “reboot”.  I wanted to start all over again.  I thought out loud “this is going to be one of those impossible days… when NOTHING goes right”….

Before the words could fully escape from my mouth I felt that tugging at my heart… I remembered this song.  “Impossible is NOT a word… its just a reason for someone not to TRY”.  I thought to myself… I could sit right here in this chair and give up on today.  I could whine and pout about how its going to suck and nothing is going to work so why even try.  I could sit here and say I am done… but somehow, I have never been the person who has been allowed, by my convictions to “give up” because believe you me there have been some times that I really would have liked to!  But no, not me.  I have been called, to be the person who God has determined that my testimony will be to overcome the odds when I don’t “stand a chance”.  I am the person who my spirit rises up and tells me that I CAN… no matter what the situation looks like.  I have often felt like maybe this could be a bit of a double edged sword but how much more am I blessed that my Heavenly Father trusts me to walk through these things KNOWING that I won’t give up… ever.  He has searched my heart and knows my anxious thoughts (and trust me … I have a lot of them!!! LOL).  So today… my scripture of the day is (of course)

Psalm 139

²³ Search me, O God, and know my heart;
test me and know my anxious thoughts.

²⁴ See if there is any offensive way in me,
and lead me in the way everlasting.

And of course the song inspiration of the day is “What Faith Can Do” by Kutless. I hope that it can become an anthem in your life. I hope that you find that hope that doesn’t EVER end even when the sky is falling. I hope that you see miracles just happen and your silent prayers get answered. I hope that when the world tells you that you CAN’T that YOU will tell it that you CAN.

Recent Comments:

• Danielle says I loved both of the finalists but I really thought it was going to be the Beezlebubs. Ben Folds [more]
• Carla says Faith has kept me sane during many a long dark days of struggle. I have seen many answered prayers, [more]
• M says You have done a amazing job with Ky and you will continue to. I have to say that I [more]
• Stella Johnson says I appreciate the website and information provided. God does send us on a journey that we can handle. IF we [more]
• Tricia says Tough lesson, but once it is internalized, it is much easier to have peace in the midst of life’s struggles. [more]

• December 14, 2009 -- Hide and Seek
• November 11, 2009 -- It can’t end this way….
• November 12, 2009 -- For God has NOT given us a spirit of fear…
• November 10, 2009 -- Heroes and Villains
• November 6, 2009 -- Breath of Heaven… Mary’s Song

Our neighbor’s child is a full year younger than Ky.  He is still very baby like in his actions and speech.  He is cute as a button but still very much a baby.  When I look at Ky now… she is not.  She will be FOUR this coming year.  She speaks in sentences and ponders life.  She orders her brothers around and demands explanations.  She can be reasoned with although at times she is, like every 3.5 year old, unreasonable.  She is smarter than most, I would venture to guess.  I choose to see my daughter, not as the child who cannot be continent, cannot hold her own stool, has the inability to keep herself hydrated, or consume enough calories to live.  I see her as this amazing miracle.  This beautiful person who we have fought so hard for.  I rarely think about things that WERE without also seeing how wonderful and miraculous those times were.  So even in looking at the “horror” of her life I see beauty, wisdom, grace and miraculous things.

But that single comment and the tone with which it was said was like a dagger.  It hit me without me even seeing it coming.  I had no idea what to do with it once I did see it.  It wounded me.  I realized… that day was one day closer.  To Kyleigh realizing…. that she is not normal.  What will I do when that day comes?  How do I explain to her the reasons why she cannot wear those big girl Ariel panties that she loves so much.  Instantly this glass house that I have created around her illness, that it is positive and good things have come from it and we have been shown miracles and and and…….. it all came crashing down.  How can I ever explain this to her and make it positive?  I can’t.  There is nothing positive about it.  There is no hope for a cure, no meds to coincide, no treatment plan that we haven’t already tried, no surgery that will help, no doctors to consult… I have nothing to give her.  I have nowhere to go and no one to seek help from.  That hurts.  A lot.

Just today, Ky had her morning poop.  Yes… she usually has one a day, unless her meds are off or she is sick… in the late morning.  (these are all things that are very commonplace to talk about in a family with an IA kid… I apologize if they are TMI for you…)  I went to reach for the wipes on the changing table and of course… nada… I go to the armoire… none there either.  I try and send Ross for a new box… hah!  Yeah right.  I really miss my Owen to grab things for me in a pinch situation.  So I left her laying there, half covered in poo (you IA moms KNOW what I am saying here!) and went running to the stockpile room to retrieve new wipes.  I came back and Kyleigh was sitting in the crab position on all fours trying not to put her bum down and get the changing table cover messy yet she was covered… she had poo from end to end and in the course of her panic had peed all over everything.  I could see it in her face… the look of panic.  She had NO idea what had just happened that she peed on herself and her own changing pad.  She was upset and in a way scared because she did not understand it all.  I was upset because I have no conception of how to try and explain.  We both cried.

As I put her in the bathtub I kept thinking… its becoming so painfully apparent now that she is not normal.  Soon she is going to know too and all of the “shadow of doubt” or hope or whatever you want to call it will be shattered.  Right now, Kyleigh believes that she is perfect… and to me she is, but how do you explain to her that she is not perfect in the “eyes” of the rest of the world… and that this problem, this issue, is somehow abnormal.  I worry about people and their painful glances as they realize that an almost 4 year old still wears diapers.  I think about words that are unintentional and just as painful nonetheless.  I am NOT prepared.  I am not prepared to hold my daughter at night when she cries because she wants to be like the other little girls at school.  I am not prepared to watch her run from the school and tell me about kids who said hurtful things.  I am not prepared to try and explain to people in the outside world what is “Wrong” with Kyleigh without also horrifying them.  (because up until now our world has consisted of 90% medical people and they all at least understand the physiology of it all)  I am not ready to accept that this is how it has to be for her.  The surgeries, the hospitals, the years, the meds, the long hours, the monitors, the pumps, the research, the tests, the doctors, the appointments, the traveling… I can do that.  Those things are things I know.  Those things I am ready for.  Another doctor, another hospital, another diagnosis… I can handle that.  This… I cannot.

To be honest with you, there is nothing in the world that has ever SCARED me about this child and I have finally found the one thing.  I find myself aching and paralyzed with fear at this moment that we are one day closer to THAT DAY when she realizes that she is not like everyone else.Recent Comments:

• Danielle says I loved both of the finalists but I really thought it was going to be the Beezlebubs. Ben Folds [more]
• Carla says Faith has kept me sane during many a long dark days of struggle. I have seen many answered prayers, [more]
• M says You have done a amazing job with Ky and you will continue to. I have to say that I [more]
• Stella Johnson says I appreciate the website and information provided. God does send us on a journey that we can handle. IF we [more]
• Tricia says Tough lesson, but once it is internalized, it is much easier to have peace in the midst of life’s struggles. [more]

• October 26, 2009 -- Do not be anxious about anything…
• October 12, 2009 -- Preppy Pumpkins
• November 22, 2009 -- Making Peace…
• November 17, 2009 -- Tomorrow is yesterday and now today is here.
• November 15, 2009 -- Tomorrow is coming…

We hide from ourselves. We tell ourselves that we are strong and happy and not hurting when really we are. We tell ourselves that we are OKAY when we are not. We bring all of these obligatory feelings on ourselves. NO, you don’t HAVE to feel it necessary to do this for this person, and go here for this event. You don’t really even have to WORRY about what will be said if you don’t.

The ONLY person in the world that you cannot hide from is the ONE person we run from the most sometimes. Yep… God. Why we run from him I don’t know because of all the people in life who will criticize how clean your house is at your party or whether you were present at this event, GOD, could care less yet we spend so much of our lives asking HIM to wait until later to try and satisfy the obligations to so many who really don’t matter. To satisfy these insane lofty goals that we place on ourselves! Sigh………… and yet in the middle of our 4th trip to Target to get the flour you ran out of you hear Him…. “don’t leave that buggy in the parking lot”. “Hold that door for the little old lady who is struggling under 6 packages” “Be a little kinder and use your HORN a little less when you drive.”

Now, you may think I am crazy but the above statements are all conversations I have had with God in the past three days. I set out on my way home from Target and I said… tonight, I am too tired and too “down” to deal with Clays Mill Road (for a multiple MANY reasons… I hate that road… not to mention that they keep tearing it up and there are potholes and patches everywhere…). BUT Clays Mill Road is the main artery for me to get back home from Target or Meijer… so WHY on earth would I drive all the way 3 blocks out of my way to get home? To AVOID having to “deal” with all the crap. To avoid that pit of my stomach, hold back the vomit FEELING I get when I start to see that park on the right. Because I didn’t want to DEAL with it. I wanted to hide.

I had determined not to go down that road and had the alternate plan in my head. I packed my bags into the car, got in, turned on the radio and headed out… down Reynolds I went, around the roundabout and by that time I was singing along to this song: (How man Kings? by Downhere)

How many gods have poured out their hearts to ROMANCE a world that’s torn all apart?

I totally lost it sitting at the light at Keithshire and Clays Mill. Balling, heaving tears. It was as if God was asking me… HOW MANY other people would do for you what “I” have done? And yet you would rather HIDE from this than to TRUST ME and lean on ME. How could I? How dare me. I sat there in disbelief that after EVERYTHING that I have been through with MY God that I would STILL find myself avoiding, hiding. Have I ever known Him to NOT see me through? Has HE ever failed to provide just what I needed? Has HE ever left me? Never has… never will. As I looked up from my tears the light turned green and the song on the radio changed. I realized something in that minute.

We seek HELP from so many different sources. We look to our friends and family to shoulder our burdens with us. We look to our church families to help carry us. We look to our spouses to pick us up when we can no longer walk on. Yet the ONLY person we NEED to seek help from in life… is God and so many times HE is the last one we look to. It seems that sometimes we only REMEMBER to ask him for help when there is some catastrophic event happening before us. We have no problem calling on God when a family member is dying or an accident has occurred… and those times, as we should, we cry out. But we NEED Him, we NEED our Heavenly Father’s love, grace and companionship every single day. We NEED to seek him for everything in our lives… good and bad!. I found myself thinking of this when I was standing in the aisle of Target. That ONE toy that Ross asked for had been out of stock all week… (I had to get it at Target because it was a deal… long story but after coupons it took a $75 toy down to $9.99!!!!!) and finally my eyes graced the boys of that toy. I instantly took out my phone and called Troy to tell him. No answer. No worries, he was working on the drywall I am sure he didn’t hear the phone. So I called my mom… no answer. My dad’s cell… sometimes they leave her phone when they are out together… no answer there either…. darnit its 7 pm… he is playing Santa somewhere. And then I thought… man I just want to tell SOMEONE! It was killing me. When all of the sudden I hear that still small voice that says… “Tell me”…. I was like… oh yeaaaaaaaaah!!! “hey God I cannot believe I found this, I have been looking everywhere and Ross is going to be so happy and I got my deal and all my coupons and this is the best night ever… I never thought I would find it.” His simple reply… “who do you think put that toy on that shelf?”………… silence……….. tears………… right there in the middle of aisle 7 of Target Toys section…. HE was the one who made this seemingly impossible thing happen and yet He was the last one that I wanted to tell. I felt very ashamed of myself.

Each day. I am learning what it means to have a PERSONAL relationship with my Heavenly Father. I know that some people may not understand what it is to “talk” to God … and I am not talking “Dear Heavenly Father we come to you today” prayer style talking. I mean talk. I mean TELL Him whats on your mind and in your heart. and then LISTEN.

The song that came on the radio next is my song inspiration of the day.
NeedtoBreathe – Washed by the Water.
“EVEN when the rain falls, EVEN when the flood starts rising
EVEN when the storm comes, I am WASHED by the water……
Even when the earth crumbles under my feet
Even when the ones I love turn around and crucify me.
I won’t EVER EVER let you down.
I won’t fall.
I won’t fall.
I won’t fall as long as YOU’RE around me.”

If I were to write the lyrics for my life they would look more like this:

“Even when the doctors don’t know

Even when your husband says I have go

Even when your friends disappear

Even when your mother doesn’t want to hear

Even when the rain falls

Even when the flood starts rising.

Even when the storm comes.

I am washed by the water.

This whole thought process brings my mind back to

Hebrews 10:

¹⁸And where these have been forgiven, there is no longer any sacrifice for sin. ¹⁹Therefore, brothers, since we have confidence to enter the Most Holy Place by the blood of Jesus, ²⁰by a new and living way opened for us through the curtain, that is, his body, ²¹and since we have a great priest over the house of God, ²²let us draw near to God with a sincere heart in full assurance of faith, having our hearts sprinkled to cleanse us from a guilty conscience and having our bodies washed with pure water. ²³Let us hold unswervingly to the hope we profess, for he who promised is faithful. ²⁴And let us consider how we may spur one another on toward love and good deeds. ²⁵Let us not give up meeting together, as some are in the habit of doing, but let us encourage one another—and all the more as you see the Day approaching.

Jesus paid the ultimate price and His body was made the ultimate sacrifice for ME. So that the veil could be torn and so that I could come directly to the FEET of God and yet we take that for granted. What a gift and price to take for granted. My prayer today is that I would know, every single day, that I can (and should) talk to my Heavenly Father at any time. I do truly believe that He would like to hear from us sometimes other than to just ask for something! So today… I challenge YOU… talk to Him. If you see something beautiful… tell Him. If you find something funny… tell Him. Go to HIM first and make a conscious effort to do so for a few days and see how your perspective starts to change quickly.Recent Comments:

• Danielle says I loved both of the finalists but I really thought it was going to be the Beezlebubs. Ben Folds [more]
• Carla says Faith has kept me sane during many a long dark days of struggle. I have seen many answered prayers, [more]
• M says You have done a amazing job with Ky and you will continue to. I have to say that I [more]
• Stella Johnson says I appreciate the website and information provided. God does send us on a journey that we can handle. IF we [more]
• Tricia says Tough lesson, but once it is internalized, it is much easier to have peace in the midst of life’s struggles. [more]

• December 16, 2009 -- What faith has done.
• November 12, 2009 -- For God has NOT given us a spirit of fear…
• November 11, 2009 -- It can’t end this way….
• November 10, 2009 -- Heroes and Villains
• November 6, 2009 -- Breath of Heaven… Mary’s Song

So, my dearly beloved is working furiously to correct this problem.  Thank God I have a programmer for a husband!  LOL

At any rate…. I think its also safe to say that “I” am having technical difficulties!  I am normally a pretty creative (I think) and festive person and this year I have just had a mental block.  I am SO excited and LOVE the holidays in ways I cannot explain but this year, I just cannot find the motivation to get it together.  Last night I FINALLY took my tree skirt to be monogrammed (been on the list to do since oh say… September), and picked up some more coupon finds along with a few new laundry baskets ( I am a instituting a new method to the laundry room that is currently a PIT!).  There are so many things I WANT to do and trust me … my house looks like a bomb went off….  but I just cannot find the energy to do it.  I end up on the couch with the kids curled up and watching dora or sitting on the computer trying desperately to motivate myself to at least get some photographs proofed but no sooner than I open the program does a headache set in that grips my head, travels down my spine and ruins every muscle in my body.  I have never give a lot of thought into being “disabled” mostly because I guess I never thought it would happen to me…. now I sit here, the very definition of disabled, and it sucks.  I rarely have the energy to drive so I am honestly glad that we are down to one vehicle and even getting the energy to go out with the kids to dinner is a challenge.  I feel like I could use a good dose of speed.  My docs ask if I am depressed… honestly… no.  Unless its totally subconscious and I have no idea that I am and I am internalizing it and that is coming out in my ability to function.  But I generally think life is good, and beautiful and the holidays are here (they ARE the most wonderful time of the year after all!) and my house is close to being finished on our never ending list of remodeling tasks, and I am ready to bake and wrap and decorate and ….. I can’t find the energy to get off the couch.  And that sucks too.

So I have decided to try and combat these “exhausted” days with prayer.  I figure if people can have a prayer “diet” I can have a prayer kick in the pants motivator adrenaline rush!!

My prayer adrenaline rush for today is: PSALM 30

¹ I will exalt you, Lord, for you rescued me.
You refused to let my enemies triumph over me.
² O Lord my God, I cried to you for help,
and you restored my health.
³ You brought me up from the grave,^[a] O Lord.
You kept me from falling into the pit of death.

⁴ Sing to the Lord, all you godly ones!
Praise his holy name.
⁵ For his anger lasts only a moment,
but his favor lasts a lifetime!
Weeping may last through the night,
but joy comes with the morning.

I truly think that there is some form of clarity that comes from reading a passage in multiple translations.  There are many points of view from each translation of the Bible that can give insight to any situation at hand.  Hearing the scripture in another form, another translation sometimes helps one to pin point the “ah ha” moment that helps them apply the scripture to their life.  So I think its also important to read THIS scripture in “The Message” translation.  It is powerful to understand it in this way as well at the New Living Translation above.

¹ I give you all the credit, God— you got me out of that mess,
you didn’t let my foes gloat.

^2-3 God, my God, I yelled for help
and you put me together.
God, you pulled me out of the grave,
gave me another chance at life
when I was down-and-out.

^4-5 All you saints! Sing your hearts out to God!
Thank him to His face!
He gets angry once in a while, but across
a lifetime there is only love.
The nights of crying your eyes out
give way to days of laughter.

I have nothing to add… that pretty much says it all.  I would say that THIS translation is exactly how I would have translated this scripture into my own life.  He got me out of this MESS… He pulled me (and Kyleigh and Troy… and every human being for that matter) out of the grave!  But there is something still so true about the last line of this passage in the good old King James Version:

⁵For his anger endureth but a moment; in his favour is life: weeping may endure for a night, but joy cometh in the morning.

But JOY cometh in the morning.  Enough said……………

Today I am praying that I would be able to be filled with that Joy that is the breath of LIFE straight from our Heavenly Father.  I am praying that he breathes life into my soul and energy into my bones.  I am praying that He would allow me to be productive but most of all to be a BLESSING to anyone I come into contact with and in order that I should do that that He will remove from my bones their exhaustion and turn my mourning into DANCING.  That God will allow this morning and every morning ahead to be THE morning that the Joy comes.  For it to be the day in which beauty rises from the ashes.

Musical Inspiration of the day: Beauty will Rise- Steven Curtis Chapman

Recent Comments:

• Danielle says I loved both of the finalists but I really thought it was going to be the Beezlebubs. Ben Folds [more]
• Carla says Faith has kept me sane during many a long dark days of struggle. I have seen many answered prayers, [more]
• M says You have done a amazing job with Ky and you will continue to. I have to say that I [more]
• Stella Johnson says I appreciate the website and information provided. God does send us on a journey that we can handle. IF we [more]
• Tricia says Tough lesson, but once it is internalized, it is much easier to have peace in the midst of life’s struggles. [more]

• December 16, 2009 -- What faith has done.
• December 14, 2009 -- Hide and Seek
• December 5, 2009 -- Believe….
• November 24, 2009 -- Be Still my heart… (er.. nose)
• November 12, 2009 -- For God has NOT given us a spirit of fear…

I made this cute little banner to hang over our manger scene.  I saw it on Etsy and thought… I can make that!!!!!!!!  So I did   LOL  As it hangs in my living room it makes me smile.  I walk past it and it truly helps me to remember what it is that I believe.  (Want to WIN one of your own??  read to the end of the post to find out how!!)

I can honestly say that I have deep seeded beliefs.  My entire life has been molded and shaped mostly by my faith and by those who have taught me what SHOULD BE even if that isn’t necessarily what IS.  I know that people are affected by their life experiences but for me it seems that instead of being shaped by experiences in my life, I have been affirmed by them.  If that makes any sense…  I haven’t been changed by these experiences but I now cling to these things that I believe, even more tightly now because I KNOW that these things are true!  From the abundance blessings that have been given to me I know that I am a daughter of the MOST high King.

So today… I will let you in on a few things I believe:

I believe that God, is our Heavenly Father who seeks prosper us and not to harm us, to give us HOPE and a future.

I believe that Jesus, the Son of God, was sent to die on the cross for the atonement of our sins and to make a way through himself to the Father.

I believe that the Holy Spirit completes the Trinity.  I believe that the Holy Spirit is real and lives inside me every single day.  I know that this is true because I can feel that sweet tug and gentle guidance that the Spirit gives me in times of need or joy.

I believe that the Bible is not just reading material.  Its a real, living, inspired God breathed instruction manual for life.  I have read the Bible from cover to cover.  I believe that it important to KNOW the Bible in its entirety to be able to correctly interpret the sum of its parts.

I believe that we are to live according to the laws of Moses but in the FREEDOM of the Church of Acts and in the spirit of the Apostle Paul and the Corinthians.  When Jesus died the veil was TORN and therefore I am happy that we can live in a church that has the freedom to worship.

I believe that the world is a beautiful place, that humans are good whether they have gone awry or not.  I believe that everyone has the ABILITY to do good and choose the RIGHT over the WRONG.

I believe that there is a RIGHT and a WRONG and nothing in between.  There is no gray area.  There is no justification.  I choose not to be lukewarm because I would rather not be spewed from His mouth. (Revelation 3:16)

I believe in the Truth.  I believe that half truths are lies.  I believe that “thou shalt not lie” and I have a very guilty conscience which rarely allows for stretching the truth!  LOL

I believe that my life was divine instituted and the plan for it was conceived long before I was.

I believe that everyone has a purpose in life and once their divine purpose has been fulfilled their time on earth is finished.

I believe that there really is something to be being a “good” person.

I believe in random acts of kindness.

I believe that lots of things that happen to us in life are RARELY about “us” and more about who we are to BE to someone or what we are charged with doing to help someone else.

I believe that you are to choose the right no matter what the outcome.  It doesn’t matter what the bum on the street is going to do with that dollar bill, you are to provide it to him.  Whatever you do for the LEAST of these brothers… you have done for Christ.  (Matthew25:31-46)

I believe that there are miracles that happen around us each day.  We should take a little time everyday to be still and know that HE is God.  To SEE the wonder in the world that we live in.

I believe that you must STAND for SOMETHING or you will FALL for ANTYTHING.

I believe that Christmas is magical and that there is nothing more beautiful that the glow of a Christmas tree.

I believe that children can hear the heartbeat of God.

I believe that love never dies.  I believe that love bears ALL things, believes ALL things, HOPES all things, ENDURES all things.  I honestly believe that LOVE never fails.  It may get lost along the way but it will never fail.

I believe that the best smell on earth is warm baked cookies and the smell of my own pillow.

I believe that no matter how hard you try you will eventually fail at something in life but that should not stop you from trying.

I believe that no matter hard you fall you can ALWAYS get up and move on.  There is no “laying down to die”.

I believe that sometimes you have to help YOURSELF.  There is only so much that others can do for you.  Sometimes even Doctors need your help to be able to help you.

I believe that you should live like you were dying and enjoy every single moment and every single breath.

In the spirit of today’s post… I am offering a little giveaway… I handmade myself this bunting to go over our manger scene this year and I want to share this with YOU!  Leave a comment and tell me what it is that YOU believe and I will randomly choose a commenter to receive a copy of my “believe” banner to add to your holiday decor!  YAY!!!!!  Comments will close on Monday at noon.  I hope to ship this Monday afternoon so that you can get it ASAP!!!  So get those comments rolling and let me know what it is that YOU believe!

Recent Comments:

• Danielle says I loved both of the finalists but I really thought it was going to be the Beezlebubs. Ben Folds [more]
• Carla says Faith has kept me sane during many a long dark days of struggle. I have seen many answered prayers, [more]
• M says You have done a amazing job with Ky and you will continue to. I have to say that I [more]
• Stella Johnson says I appreciate the website and information provided. God does send us on a journey that we can handle. IF we [more]
• Tricia says Tough lesson, but once it is internalized, it is much easier to have peace in the midst of life’s struggles. [more]

• November 24, 2009 -- Be Still my heart… (er.. nose)
• November 12, 2009 -- For God has NOT given us a spirit of fear…
• November 11, 2009 -- It can’t end this way….
• November 10, 2009 -- Heroes and Villains
• November 9, 2009 -- 7 weeks Till Christmas

Or shall I say, “We waited, we froze and we emerged victorious!!!!!!!”

If you look VERY closely to the very FIRST people in line in the pic… that’s US!!!!!!!!!  All the way to the left you will see the security guy with an orange vest on and we are actually talking to him!

2009 will go down in the books at one of the greatest BF in history! Troy waited for 8 hours in the freezing cold outside the Target door.  I can’t say that it was horrible though… I spent the time in between dropping him off and meeting him to wait on Walmart price matching, getting gas, and dropping off hot drinks to the early crowd at Target.  We honestly had fun!  We met some hilarious people that we hope to see again next year.  Seems that this “waiting at the crack of dawn” is tradition for MANY people.  Troy and I were the 2nd people in line (respectively) and were the FIRST to get our hands on the 32 inch Westinghouse LCD!!!!!! The people in front of us were after the 40 inch.  I tried to convince Troy to get the 40 inch but we ultimately decided the smaller was better especially since it is more portable than our 42 inch.  Now we can take this one to weddings as a monitor.  Plus… the ENTIRE rest of our christmas shopping for the kids added up to less than the $200 difference!  We are very proud of ourselves for making some really GOOD financial decisions lately.  We have ourselves on a strict budget and have been VERY disciplined about saving money.  It really is a GOOD feeling.  I thought that when we went shopping on BF I would remember how much I missed shopping and actually I didn’t feel that way at all!  It almost hurt to spend the money we had worked so hard ot save!

See the NUMBER at the bottom?  Smell the sweet scent of victory!  #1 baby!!!!!!!!!!!

A little help from our new friends… notice the hunting glove on the right?  That was the father/son team who were 1st in line and got the #1 ticket for the 40 inch TV’s… they were a riot.  They said they would see us next year!  Its a date guys!  We’re bringing the grill next year!  LOL

A self portrait that went awry… and oh my lord… I look like I had just hit a bong!  I guess that is what happens … it was 4 am by this time and I had officially been awake for 24 hours straight!  I earned those cracked out eyes!

Now… that’s better… the 1st team in line took a quick pic for us!

To be truthful, the shopping began on Thursday bright and early when I picked up my mother at 4:30 am to head to Meijer (which was insanity btw…)  We were not there for big ticket items so it didn’t make much difference to us!  My mom picked up some $0.69 wrapping paper but I didn’t care for it so I will keep looking. We got SOCKS for the entire family (which we were direly in need of!) for $3.99 / bag a cute sweater for myself $14.99 and a few sets of Christmas lights for $1.99 each (which I later found at DG for $1…….grr…. return line here I come!)

Then we scooted on over to Walmart and price matched their 2 liter Cokes to DG for $0.75 each.  I also had $1/3 Coupons (from Speedway!).

Here are my total price breakdowns for the past two days:

Kmart

Magellan 1220 (regular $149.99) – $79.99 (actually got mine on monday for cheaper than BF) = TS = $70 (plus I am going to sell our old one for $25-40 on CL!!!)- we later figured out this was the 1210….sucks… so we reordered the right one for $80 and returned this one!  Man… I hate that!

Trio Building Block Set – for Ross- $24.99 – $10 coupon = $14.99

Spongbob Bed Tent – $12.99 (regularly $19.99)

Barbie for Kyleigh – $9.99 (matches the movie my mom bought for Christmas!!!)

Target

32 inch Westinghouse TV – $236 ($10 Gift card + sale) – regularly $499 (Ithink)

$3 Appliances

$24.99 Star Wars Clone Helmet (Owen was dying for this… ugh… I just think $40 for a freakin helmet is insane!) – Regular $39.99 – price cut $29.99 – $5 Star Wars Product

Walmart- a few DVD’s and Wii Games for $3-9 each

Tag Reader system (Owen’s big gift)- Price Matched to Kohls- $29.99 – $10 Tag Coupon (from website) = $19.99

Office Depot -

$84.99 Desk (regular $219.99) – on sale for $99 – $15/$75 coupon from mailer (and let me tell you what… this desk is AMAZING!!!  It is huge and heavy… definitely not what your $99 would NORMALLY buy you   I desperately needed this for my computer area in the kitchen since I do 99% of my work there!

Then on Saturday I woke up bright and early because Kyleigh ONE request for Christmas was a Princess Vanity.  They had one at Target for $49.99 but it had some kind of keyboard… she didn’t care about that… she wanted the one that had all the makeup etc.  So TRU had it for $24.49 at midnight and that was insanity.  They were all gone by the time I got in the door (the line was literally 1000 people deep!).   Big Lots had a similar one on Saturday only special for $25.  I arrive at Big Lots at 7:50 am… only 7 people in line!  SCORE… except for the fact that they did NOT get any in their shipment……………………………………………..ahhhhhhhhhhhhhh!!!!  Lucky enough for me… my mom and dad wanted to ENSURE that Kyleigh got what she wanted and were waiting at the OTHER Big Lots (2nd people in line!) and got one of only 8 (EIGHT!) that were sent to the entire city.

Ahhhhhhhhhhhhhhh………………………. Christmas shopping done.  Mostly… lol.  I even managed to make it to Hobby Lobby (be still my heart!) and pick up my containers etc for my baking …. it was a great weekend!  Already counting the day until Black Friday 2010!!!Recent Comments:

• Danielle says I loved both of the finalists but I really thought it was going to be the Beezlebubs. Ben Folds [more]
• Carla says Faith has kept me sane during many a long dark days of struggle. I have seen many answered prayers, [more]
• M says You have done a amazing job with Ky and you will continue to. I have to say that I [more]
• Stella Johnson says I appreciate the website and information provided. God does send us on a journey that we can handle. IF we [more]
• Tricia says Tough lesson, but once it is internalized, it is much easier to have peace in the midst of life’s struggles. [more]

• November 9, 2009 -- HOT DEAL- FREE photo Christmas cards!!!
• November 9, 2009 -- 7 weeks Till Christmas
• November 8, 2009 -- Christmas Card Preview!
• November 7, 2009 -- 8 weeks til Christmas
• October 28, 2009 -- 9 weeks until Christmas…

I do.  I know many of you do to.  I would like for you to meet Becky.  She is 10 years old and has been battling bone cancer for two years.  Her doctors have told her parents to “take her home and enjoy Christmas” as this will likely be her last.  While Becky’s family continue to believe and pray for a miracle they also face the reality that their daughter is dying and without a divine intervention she does not have much time left.

The real reason I am writing about Becky is because she has made a Christmas wish.  She wants to go to the Macy’s Christmas Parade and through winning a contest on the Macy’s Believe 2009 Campaign her dream is POSSIBLE!!!  She just needs to get the most votes and it will become reality.  You may vote once per person (computer) once PER DAY!!!!  So here is one of MY Christmas wishes.  As bloggers we have POWER to share our thoughts and convictions but also to HELP those in need.  PLEASE pray and if your heart leads you, POST Becky’s story and link so that all your blog readers might also go and VOTE for Becky!  We have the power to help this angel get her wish.  Becky has touched my heart and I know she will yours too   So go out and VOTE today and EVERY day until December 3, 2009!!!!

Until this week Becky was in the solid lead… she has now dropped to second so we need YOUR help!!!!

GO HERE AND VOTE for BECKY : Macy’s Believe 2009Recent Comments:

• Danielle says I loved both of the finalists but I really thought it was going to be the Beezlebubs. Ben Folds [more]
• Carla says Faith has kept me sane during many a long dark days of struggle. I have seen many answered prayers, [more]
• M says You have done a amazing job with Ky and you will continue to. I have to say that I [more]
• Stella Johnson says I appreciate the website and information provided. God does send us on a journey that we can handle. IF we [more]
• Tricia says Tough lesson, but once it is internalized, it is much easier to have peace in the midst of life’s struggles. [more]

• November 7, 2009 -- Please pray for the Owens and Hilliard families.
• June 11, 2009 -- Say a quick prayer…

Last night we got to spend some time with our buddies, Sean and Amber (and their kiddos… they have three and one on the way- totaling 4 soon!)  Sean is Troy’s best friend since… well as long as we can remember… I think maybe elementary or middle school ?  How funny that two best friends married two Ambers?  At any rate and Amber and I have been alternating being PG so our kids are literally stair steps… 7,6,5,4,3,2, and now the new baby.  I told Amber that I would not be joining the ranks of her PG’ed ness any time soon!  LOL

But I digress…  I walked into their house last night and (aside from the fact that I TOLD Troy that they would have their Christmas tree up and I was RIGHT!!!!!!  I am so behind already!) I smelled the most heavenly smell.  I am pretty sure heaven will smell like Scentsy’s “Welcome Home” scent.  I mean really.. I can honestly say I never thought anything would surpass my Bath and Body Warm Vanilla Sugar… but this one wins HANDS DOWN!  If you are in Lexington and having a Scentsy party or are a Rep… I need to invest!!!  (or should I say my hubby needs to invest for Christmas!)  LOL

Recent Comments:

• Danielle says I loved both of the finalists but I really thought it was going to be the Beezlebubs. Ben Folds [more]
• Carla says Faith has kept me sane during many a long dark days of struggle. I have seen many answered prayers, [more]
• M says You have done a amazing job with Ky and you will continue to. I have to say that I [more]
• Stella Johnson says I appreciate the website and information provided. God does send us on a journey that we can handle. IF we [more]
• Tricia says Tough lesson, but once it is internalized, it is much easier to have peace in the midst of life’s struggles. [more]

• November 10, 2009 -- Heroes and Villains
• December 5, 2009 -- Believe….
• November 22, 2009 -- Making Peace…
• November 9, 2009 -- 7 weeks Till Christmas
• November 7, 2009 -- 8 weeks til Christmas

“Don’t hope for a miracle… make one”

I think this is how I live my life.  Some might find it “un=biblical”.  For me, its what I believe in more than anything in the world.  I believe that sometimes, instead of HANDING us the product (miracle), God hands us the TOOLS to make it happen.  Look at it this way.  Say God has hosted Thanksgiving dinner every single year and finally he says… I am going to buy the turkey, the stuffing, the cranberry sauce, the green beans and onion straws but YOU have to cook your own.  He still PROVIDED for us … did He not?  But what He provided were the TOOLS to make it happen.

I believe in divine intervention.  I believe that God has a purpose for EVERY person and that their lives will NOT end before their purpose is fulfilled.  For some, their purpose is to live a long life.  For some their purpose is to become someone great who changes the world.  Some will become famous to many and some to a very few.  For some, it is to become someone great as parents of extraordinary children.  For some, their purpose is FULFILLED in their death and for some in their life.  At any rate this life is simply a means to an end.  A GLORIOUS, amazing, happy ending.  I know that people cry at funerals but I truly hope that instead of even HAVING a funeral for me, that my kids will take all that money and go to the beach and sink their toes in the sand that I so very much love.  I hope that they will sit hand in hand on that Alabama coast line and watch the sun come up and feel the way I felt this summer as I watched my husband, father and son fish in the surf as the sun rose over the horizon.  I hope that my kids will donate any money I have left to a children’s hospital because I think there is something so cruel and wrong about a child’s death no matter their purpose.  Most of all, I hope that I die, old and gray, wrinkled and well loved by my family and by the years that have aged me so entirely.  I hope that I die long after I meet my grandchildren and THEIR grandchildren.  That is HOW I intend to die.  Happy, healthy and in a LONG time from now.

So… I have made peace… with life… with death… with God… and with my diagnoses.

I know, that my body is getting tired.  I know that my brain is overworked and is being literally “fried” by pressures being put on it.  I know now, after this trip, that my brain is deteriorating and it is doing so, quickly.  I know that I will likely need to make a decision soon.  I will never be ready to decide to have someone hack into my skull but I will go at this surgery with everything I have.  Just as I always did for Kyleigh, I will not go down without a fight (or under I guess is a better way to state it… get it?  Under anesthesia?   LOL Get it?  Okay… maybe I am the only one who thinks its funny… but I have to laugh or I would cry).  After this week I realized that its not okay to be in pain everyday and merely exist.  Its not okay to go for days on end without sleep.  Its not okay to NEED pain meds to be functional.  More than any of those things, there is HELP and there is HOPE.  I had heard from a few in the Chiari community that they were not fans of Dr. Benzel but for me, I think he is just right.  We had a good honest talk with him and he gave us a good level headed opinion.  His opinion was, he needed more answers.  We were 100% with him.  It totally blew me away that here in Kentucky the doctors basically told me, either take your meds and shut up or have the surgery and shut up.   I just think that there are always MANY ways to skin a cat.  You have to FIND the right one for you.  I firmly believe that I could care less what the person’s “ranking” is or which hospital they are at.  If they believe in me, are motivated to find help for me and are able in their skills to carry out their plan… that person is just perfect.

For me this past week was sobering.  I like to fight the good fight and “never let em see ya cry”.  I hurt more than I allow people to believe.  I am tired to the point of exhaustion most days.  Some days I wonder if this is all life has to offer.  Some days I know that I don’t want to live “this way”… not in pain and with no energy.  I feel like a shell of “me” most days.  Its sometimes an “out of body” experience.  I used to be the person who could see “the wall” coming and push on through.  Sleep, motivation, brute strength, endurance.  No matter how much I felt like I “couldn’t” go a step further I KNEW I always could… I had that ability to push myself beyond my own limits.  Now….. it pains me to admit it…. but I just can’t.  Not because I don’t want to or don’t TRY but mostly because my body has given up on me.  It has put in its two week notice and raised the white flag of surrender.  And that sucks.  To be trapped in a body that cannot keep up with your mind.  Heaven forbid to have a brain that cannot keep up with its own functions.  Sigh……………..

I realized, after this trip, that I am worse off than I allow myself to believe.  I get up every morning (although late sometimes).  I take my 6+ medications and I function.  I smile.  I laugh.  I am still a mom.  I am still a wife.  I am still a photographer, a sister, a daughter, a friend.  I am still in love.  I am still happy.  I am still strong willed and opinionated.  And now I am also in pain.  constantly.

It started with a level 1-2… just that annoying pain that you think “oh man I need some Tylenol before this turns into some BAD”.   So… I took some Tylenol.  Then the 1-2 turned into a 3-4.  So I took some more Tylenol to the tune of thousands of milligrams… watching the clock every 4 hours to take more.  Then I started forgetting things, and dropping things, and blacking out.  I stopped driving and working and sleeping.  The pain slowly creeped up to a 5-6 and I sought medical help.  I went looking for anyone who could tell me WHAT was wrong and how to fix it.  I continued to smile and rare a few person knew how badly I was hurting daily.  I started to slow down.  I couldn’t move at my normal pace or push through “the wall” anymore.  I couldn’t push myself at all.  My body had had enough.  It turned in its two week notice sometime in the Spring of 2009.

By summer, my pain approached 7-8.  Nights brought lots of tears, puking, phenergran, heating pads, TONS of neck rubs and utter confusion.  Some people would call it “hopeLESS” I call it “hopeLOST”.  Because hope LOST can be FOUND again.  That is the beauty of it.  Hope LESS means that the hope has been subtracted or taken away from the situation and THAT will never happen in my life.  But these THREE remain, faith, hope and love.

Summer also brought confirmation that my fears were not unfounded. A diagnosis.  It was not any easier than any one that had ever been laid in front of me for Kyleigh.  But somehow, the tears that came for her, did not surface for myself.  I can’t.  I am THE MOM, THE WIFE… I don’t cry.  Not for myself.  The thing is, that I knew too much.  In searching for answers for Kyleigh I had collected lots of information on this “headcase” of mine.  For Kyleigh, we were able to stop the progression and maybe even REVERSE some side effects.  One of the top Chiari / Tethered Cord surgeons in America gave the opinion (for Kyleigh) that her Chiari malformation (hers is 5mm = ACM1) maybe have been exacerbated by the fact that her spinal cord was SO tight, it was literally pulling her brain down from her skull.  He was MORE than sure that if we stripped her filum (de-tethered her cord) that she would not only see and improvement in her TC symptoms but in her Chiari ones also.  He was right.  Kyleigh shows little to NO progression in the realm of ANYTHING neurological.  I am thankful for that.

For me… my issue has gone undetected long enough that I have sustained damage.  It is not guaranteed that even AFTER my surgery that any of these issues will disappear or even get better.  Its a 50/50 shot for me.  BUT… 50/50 is better than zero.  Why is my Chiari significant?  That is a question that Dr. Benzel set out to answer.  Here is the answer:

My chiari is likely causing brain stem compression.  Chiari is a congenital malformation that can be totally benign throughout your life.  It becomes dangerous when it starts to compress the brain stem.  This can lead to many things or ultimately death.  This is why, for me, there is a bit of urgency in our fight.

At this point we are 98% sure that this “road” will lead me to become a zipperhead. (not sure what the other 2% is… not sure I want to know!  LOL)

So… what IS a zipperhead?  Its the term affectionately coined by the Chiari community for the people who have undergone and conquered their Posterior Fossa Decompression surgeries.  The scar is a large lengthy scar that runs down the back of your head from the mid cranium to the base of your neck between your shoulders.  It very much resembles a “zipper” on the back of your head.  Thus the term “zipperhead”.  It is a badge of honor really.  I will be proud to wear that scar and hopefully when Kyleigh is old enough to understand, she and I will be proud of our scars together.

I realize that this will not be easy.  For me.  For my family.  For my kids.  But most of all for my husband.  He is scared and I know it.  Though neither of us will say it I know…  I know because…. I am too.  This will also mean some major life changes.  Our finances are skirting the edges of danger as it is with me being self employed in a horrendous market and having piles of bills from Kyleigh already.  We are getting ready to make some big decisions that will make both our childcare and financial situations easier.  Emotionally it will be easy and hard at the same time but we are ready.  We know that when this surgery comes I will need help 24-7.  Troy still has to work and do all the things he does to keep our household running but with the added strain of me being disabled for a bit.  It brings tears to my eyes thinking of all the ways in which I will watch the life Troy and I have made go away, but it will morph into a brand new one.

I have dubbed the year 2009 the year of Making Peace and the year 2010 will be the year of New Beginnings.  I am very much looking forward to January

So… that’s where I stand.  I still didn’t get around to telling you about our crazy week in Cleveland did I?  Well there’s always tomorrow… tonight I just needed to get all of this off my chest.Recent Comments:

• Danielle says I loved both of the finalists but I really thought it was going to be the Beezlebubs. Ben Folds [more]
• Carla says Faith has kept me sane during many a long dark days of struggle. I have seen many answered prayers, [more]
• M says You have done a amazing job with Ky and you will continue to. I have to say that I [more]
• Stella Johnson says I appreciate the website and information provided. God does send us on a journey that we can handle. IF we [more]
• Tricia says Tough lesson, but once it is internalized, it is much easier to have peace in the midst of life’s struggles. [more]

• November 17, 2009 -- Tomorrow is yesterday and now today is here.
• November 15, 2009 -- Tomorrow is coming…
• August 23, 2009 -- Week 5- summed up as weirdness, tingling, leg pain and other great neuro junk.
• November 4, 2009 -- Another Day… more goo…
• September 27, 2009 -- Do you think you could be depressed?