Its official!  The house is on the market as of Monday.  Troy Todd, our fabulous Realtor, came and put the sign in the yard and I thought that it would be an emotional time but truthfully I am REALLY excited about the new ventures and possibilities in our life!  I know there will be many questions swirling throughout friends and family and I would just like to clear the air on some things:

So… where are we going once the house sells? We are moving in with my parents.  My parents are converting their garage into a garden home in the spring and for the time being their basement is being finished out into an apartment (we had done this once before but NOT like this time!  This time we are going drywall, recessed lighting, kitchen and all!)  We are hoping that timing coincides to be able to finish their home before we move in but it looks like God may have other plans…..

Why are we moving? Ah that is such a deep question.  For a variety of reasons but mostly because three years of stress on our finances, compounded by a deathly ill child, an affair, and a major remodel of the house has led our finances into a mess that will be hard to dig our way out of.  Every bit of “savings” that we have in the world went into renovating this house (and renovate we did! … pretty much everything from the studs up is new!) so we now find ourselves selling it to get our money back out of it.  We know though, that God is working out a way for us to be DEBT FREE, have a tiny bit of savings, and be rid of this house all at once!  Mostly though, we need help.  Having three kids is not easy for perfectly healthy families and we now have not one but TWO family members who are not well.  (Ky and myself.)  It is not fair to Troy to ask him to run a household, have a full time job, keep up the business (what little of it still exists) and take care of three kids full time.  Without this move, that is what the months after my surgery would entail for him because I will be nearly completely disabled.  I will not even be allowed to sit up straight for several weeks after the surgery.

Which brings us to “the surgery”. My neurosurgeon made it clear that he is going to try one more consult with a rheumatologist but after that I will have to stop putting off the surgery.  He told me to prepare to make peace with it so that at our next appointment (in 2 months) we would be ready to proceed with whatever path may need to happen.  I don’t know that I will ever be ready to decide on this but it will be a lot easier to proceed knowing that my kids are within walking distance of their school, there is someone at the house 24/7 and they will always have full bellies and a bath at night.

What made us decide to move in with my parents? They offered.  When I say offered.  They sincerely wanted to help and have decided to GIVE UP their bedroom, their house, their kitchen and everything so that our family unit can stay in tact and build something new for them.  I find myself in tears to know that my parents would be willing to make that kind of sacrifice.  This house, is the house that I grew up in.  My parents have owned this house for almost 26 years.  They have built everything in it… literally from the upstairs walls, roof, bathroom, to the kitchen cabinets.  Everything is the result of THEIR hard works, blood, sweat and tears.  For them to sacrifice that for ME and for my family… makes me know that I am the luckiest girl in the world!

Isn’t this house the “family” house? It may have been the place where Troy’s grandmother resided but it very much is OUR home.  This is the house we brought Kyleigh home from the hospital to, and the house that she nearly died in one day.  This is the house that we say a vision of, and made it come true with our own money and hard work.  This house was BOUGHT and paid for FROM the family so it truly does belong to us.  It is not something that was wholly “gifted” to us just as it was not “gifted” to Troy’s parents.  It was a part of an estate that was settled nearly 15 years ago now.  I would be more than happy to sell this house to any member of the family willing to buy it but for us… now… we must sell and for as close to asking (or more!  I am still believing for a bidding war!) so that we can pay off debt and move on with our lives. This house also holds a lot of BAD memories for us both and Troy has told me he has no idea how I have had the strength to stay here as long as I have.  Well… its not me, God has given me strength and grace to see this whole process through until now and HE will continue to be the WAY MAKER in all of our paths.

Will we buy a new house some day? Maybe… maybe not.  I have always wanted a family “compound” if you will.  It would be my ultimate dream to have us, the grandparents, my kids, their kids, and hopefully generations to come, all reside on one piece of property.  There is something so beautiful about a family being so close to their roots and having my kids hear stories about my grandfather (my dad’s dad) in the navy and about my grandmother’s “little house in the country”… I truly wish that Troy was able to tell our kids about his family but sadly he doesn’t know a lot about them.  It was something that was evidently never discussed in his family.  (I am sure that statement will piss someone off but I am done with it at this point.)  Maybe some research in the future will take care of that.  I want to sit down with scrapbooks of pictures of the great-grandparents and I want them to eat Sunday dinner with the great-grandparents who are still alive.  I want them to be able to say things like “My Pap would roll over in his grave if he knew…” because then I will KNOW that my kids really KNEW their grandparents and not just some “image” of what a grandparent should be.

Troy and I were working in the garage the other night.  Troy was trying to cut something on his chop saw and he looked at me and said “As Teddy Teater would say… this blade is as dull as my life”… I laughed and cried at the same time because it really hits me in the heart to know that my dad and Troy have the kind of relationship that my dad and my grandfather had (Pappy)…  because having a truly respectful relationship with your in laws is what is BEST for your kids.  That can’t always happen, as I am finding out, but when it CAN… its a beautiful thing.

Because like the Allstate commercial says…. I have realized that the size of my television is LESS important that the number of people gathered around it.  I want my kids to have such a rich sense of heritage that they KNOW and love all of these things.  I want them to crave this for their own families in the future.  I want them to always come home for Christmas because that is JUST WHAT YOU DO in our family.  If you NEVER tell your kids these things, they will never know.  Maybe its the fact that I have had to come to grips with the brevity of life, but I have become a person who wastes not ONE chance to tell my kids how much I love them.  I have and will continue to do EVERYTHING in my power to make their life “rich” and that is more meaningful than any CREDIT SCORE or bank account balance.  Because I know the MEASURE OF A MAN is NOT how tall he stands, how WEALTHY or INTELLIGENT he is..

So if you are still out there and haven’t ditched me after my LONG hiatuses… (lol) please join me in prayer.  God is already working a miracle!  We received an OFFER on our house the first day it was shown!  That offer is contingent and that makes us nervous.  We also, possible have 1-2 MORE offers in the fire that are trying to work out the details!!!!  God is good and He is working MIGHTILY in our lives right now.  I KNOW that after this is done we will stand and look back and KNOW that we are a people the Lord has blessed!  (Isaiah 61:9)!!!  (that also happens to be the scripture painted on my wall at the top of my stairs!)

My song inspiration of the day is: 4Him – Measure of a Man

This world can analize and size you up and throw you on the scales
They can I.Q. you and run you through
Their rigorous details
They can do their best to rate you
And they’ll place you on the charts
And then back it up with scientific smarts
But there’s more to what you’re worth
Than their human eyes can see
Oh, I say the measure of a man
Is not how tall you stand
How wealthy or intelligent you are
‘Cause I’ve found out the measure of a man
God knows and understands
For He looks inside to the bottom of your heart
And what’s in the heart defines
The measure of a man
Well, you can doubt your worth
And search for who you are
And where you stand
But God made you in His image
When He formed you in His hands
And He looks at you with mercy
And He sees you through His love
You’re His child and that will always be enough
For there’s more to what you’re worth
Than you could ever comprehend
Oh I say the measure of a man
Is not how tall you stand
How wealthy or intelligent you are
‘Cause I’ve found out the measure of a man
God knows and understands
For He looks inside
To the bottom of your heart
And what’s in the heart defines
The measure of a man
You can spend your life persuing physical perfection
There is so much more
More than ever meets the eye
For God looks through the surface
And He defines your worth by what is on the inside
I say the measure of a man
Is not how tall you stand
How wealthy or intelligent you are
‘Cause I’ve found out the measure of a man
God knows and understands
For He looks inside
To the bottom of your heart
And what’s in the heart defines
Oh, I say the measure of
The measure of a man
Is not how tall you stand,
How wealthy or intelligent you are
Oh, I’ve found the measure of a man
God knows and understands it
For He looks to the bottom of your heart
And what’s in the heart defines
Yeah, what’s in the heart defines
Yeah, what’s in the heart defines
The measure of a man
I know, I knowRecent Comments:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• December 16, 2009 -- What faith has done.
• May 10, 2009 -- Hold Fast – Mercy Me
• April 9, 2010 -- !!!!!!!!!! SOLD !!!!!!!!!!!!
• March 5, 2010 -- Priorities.
• February 5, 2010 -- A parent’s love…

This journey has led me to meet so many amazing people… in the blog world I have these “friend” who are truly strangers, yet your heart is drawn to people you have never met.  You don’t know why or how but you find yourself thinking of them, hoping with them, praying FOR them… and they become a blessing to you.  I know many of you have watched our life, in all its ups and downs, and have done the same for us.  I know that there are perfect strangers out there whom I do not even know your names who pray and bless us each day.

I would like to ask each of you to take a moment and pray for a few of our friends.  These are people whom God has really placed on my heart.

Eithene Rose is a darling little girl, who is just a few weeks younger than Kyleigh.  Her mom Jessica and I have been friends since we met online in an IA group.  Eithene and Kyleigh have seemed like soul sisters for so long and recently their family was given the news that Eithene does in fact have Mitochondrial disease.  I cannot imagine what a hard day it was for them because it was a day that downright SUCKED for me.  I sat in front of the computer sobbing.  I am crying right now.  Not that I don’t believe that God has them in His hands always but I look at Eithene and at Kyleigh and my heart hurts in ways I cannot begin to explain with words.

Whitney and her husband have been struggling with infertility.  On January 6 they found out that Whitney had miscarried.  Normally I skim through and its not that I am NOT sympathetic to infertility but its something hard for me to relate to.  But Whitney, it seems that every single post on her blog just rips my heart out.  Or makes my heart sing.  Why I am so attached to her, I don’t know but if you would find it in your heart to pray for her body to heal itself from this miscarriage and for God to dually bless her womb… I would be forever grateful.

The Sullivan Family – Sara (mom of this beautiful little group) was diagnosed with cancer while she was pregnant and went home less than a month after her beautiful baby girl was born on September 22, 2009.  Recently the autopsy concluded that it was NOT the cancer that claimed Sara’s life but a seizure which lead to cerebellar herniation (brainstem compression) which eventually made her body functions impossible.  This tears my heart into a million pieces … for all obvious reasons this scares the living daylights out of me…Now her husband, Brad, is raising their beautiful daughter Chloe by himself.  Please join me in praying for them!

There are so many more but today those are the three that my heart is really heavy for.  Also for the entire Nation of Haiti… I continue seeing news footage and I am glued to the television.. my heart is heavy for them also and praying that our country will be able to be a blessing to these people.  Seeing the PEACE on the streets as these people have NOTHING and nowhere to go yet spontaneous praise and worship services are breaking out.  What a testament to the power of faith.  I know that our Heavenly Father will not forsake that beautiful nation and will allow them to rebuild BETTER than they were before!Recent Comments:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• April 28, 2010 -- Have a little talk with Jesus…
• November 25, 2009 -- Do you believe in Miracles?
• November 7, 2009 -- Please pray for the Owens and Hilliard families.
• June 11, 2009 -- Say a quick prayer…

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:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• April 28, 2010 -- Have a little talk with Jesus…
• March 5, 2010 -- Priorities.
• December 16, 2009 -- What faith has done.
• December 14, 2009 -- Hide and Seek
• December 5, 2009 -- Believe….

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:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• April 28, 2010 -- Have a little talk with Jesus…
• January 14, 2010 -- New Year, new prayers…
• November 7, 2009 -- Please pray for the Owens and Hilliard families.
• June 11, 2009 -- Say a quick prayer…

This has been home for us this week.  I have to say that the Cleveland Clinic foundation is breathtakingly beautiful.  When you pull up to the front drive it nearly takes your breath away.  I always thought that Cincinnati Children’s was a magical place… I had not KNOWN what it is to be in awe until I pulled up to Cleveland Clinic, parked, went through the UNDERGROUND TUNNEL system, up the escalators and into the space aged, beautiful glass and open concept building M (Main).  Troy and I wondered through as if we had just been dropped onto a different planet.  I really have NEVER seen anything so architecturally beautiful.  I am a huge fan of the historic architecture but this is what I would expect our civilization to look like long after I am gone.  (yes… I was smitten!)

It has been a very BLESSED and assuring time.  I know, more than ANYTHING that my Heavenly Father has been with Troy and I this week as we embarked on this journey.  While the results of our days at the Cleveland Clinic are sobering, and my heart is a bit heavy, I am NOT shaken or scared.  I forget who it was who used to say “If He leads you TO it, He’ll lead you THROUGH it” but it’s so true.  When we headed out on Monday for my appointment at the Spine Center at the Cleveland Clinic, I felt impressed (read: led by the Holy Spirit) that I needed to pack Troy and myself for 3 days.  Not so amazingly, that is EXACTLY how long our stay was extended.  Although the week was quite tiring and hectic I know that every single piece of this puzzle is falling being placed together perfectly.

I will go into the whole exhausting week’s events (and let me tell ya… there are some DOOSIES…) tomorrow because tonight I am just glad to be home, with my kids (man I missed them …) and my hubby getting ready to sit down to Grey’s Anatomy and some other TIVO’ed shows.  (I mean REALLY Cleveland… is the Brown’s game THAT important that you should interrupt HOUSE???… I think not!)  Thank you THANK YOU to everyone who is praying and keeping us encouraged!  It means the world to us!

Keep the prayers coming because this week is just the beginning of my journey into becoming a “Zipperhead”Recent Comments:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• November 15, 2009 -- Tomorrow is coming…
• November 22, 2009 -- Making Peace…
• November 17, 2009 -- Tomorrow is yesterday and now today is here.
• November 4, 2009 -- Another Day… more goo…
• October 14, 2009 -- Days like today is when its all too real.

Tomorrow we will meet Dr. Edward Benzel at the Cleveland Clinic.  I truly wish that we could get to the Chiari Institute in New York but at this point it is out of our reach.  We are hoping that our insurance will pay for some of the costs if I were to have surgery in Cleveland because they do accept Anthem.  Whether Dr. Benzel is out of network or not I don’t know.  Its a better shot than TCI because I KNOW that they don’t take our insurance!  I cannot see any way that we would be able to pay for a $300,000 surgery out of pocket. But I digress.  This is not about what can’t or won’t happen its about what IS and WILL and CAN happen.

Tomorrow I hope to not only find a neurosurgeon but I hope to find a PLAN.  A plan that brings some HOPE and peace and relief (literally pain relief!).  I have been “not” thinking about this for the past week and honestly I was up in the air as to whether we needed to go or not but I really just feel like I am supposed to be there.  Whether it is to reassure me that I should stay here in KY with Bob or whether it is to find an expert in Dr. Benzel… I don’t know.  I just KNOW that I am supposed to go.  So I go.

Tomorrow please pray for traveling mercies for Troy and I.  Its almost a 7 hour drive one way and we will be booking it to get there by my 3 pm appt.  Pray that God would divinely intervene in this “case”.  That He would impart wisdom, expertise and compassion.  That God would clear the way for Dr. Benzel to have a stress free day.  I pray that God would make my case “interesting” and that Dr. Benzel would find particular interest in treating me.  That He would abundantly BLESS Dr. Benzel and his family, his patients, his staff and friends.  That God would place His hand of protection on me and that HIS will to “give me HOPE and a FUTURE” would be fulfilled.  I know I cannot pray for Dr. Benzel to be “it” but I can pray that he would be an instrumental part of this puzzle that is my brain.  That he would be able to provide us with insight and MOST of all a TREATMENT plan.  I need a plan.  It’s kind of my thing….  Mostly I just need to FEEL better.  I need to BE HERE for my kids for the next 60+ years and I NEED someone to care for me as a person and as a patient.

Tomorrow will be here before I know it.  There is a lot to do, bags to pack, documentation to create, meds to take… so I am off to do all the good stuff I do at night and I will rest peacefully tonight knowing that WHATEVER the outcome of tomorrow… I AM being HELD by the ONE who will never leave or forsake me.

Tomorrow please join me in prayer.Recent Comments:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• November 22, 2009 -- Making Peace…
• November 17, 2009 -- Tomorrow is yesterday and now today is here.
• November 19, 2009 -- One long week……….
• August 23, 2009 -- Week 5- summed up as weirdness, tingling, leg pain and other great neuro junk.
• November 4, 2009 -- Another Day… more goo…

Our life exists in a world where children die…. daily.  Its a community of parents who understand each other because we watch our kids fight to live.  We pray and do what we can and then we release them into the arms of our Savior and allow HIM to carry them, to heal them or to take them home.  This world is a world we were thrust into without our permission but in the world of Emily Pearl Kingsley : “But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay”.  We are faced, daily, with the brevity of life and the sanctity of days, hours and minutes.  Each time I hear of another family whose angel earns their wings I tiny piece of me dies.  I wonder so many things like why Kyleigh was chosen to stay while others were called home….  I truly understand that our lives are all on borrowed time and each time I see another angel like this it makes me hold my kids a little tighter and appreciate them a little more.

Please pray for peace for Gavin and his family.  Pray that he will enter the arms of our Heavenly Father without suffering and that God will wrap his arms around his hurting family as they say goodbye.

If you would also remember our little friend Eithene in your prayers tonight I would be eternally grateful.  Eithene is Kyleigh’s “sistah from another mistah” if you will.  She and Ky were born within days of each other and have traveled a long road fighting VACTERLS and all its incarnations.  Eithene is back in the hospital and had an extremely LONG time in the OR this week.  She is having a hard time in ICU recovering.  Eithene is allergic or tolerant to MANY meds and due to her GI status cannot have many others so finding a way to treat her pain is hard.  It absolutely tears me up inside to know that these kids not only have to go through all these surgeries but have to HURT also.  Its like the least we can do to make sure they are not in pain and then sometimes even THAT is not possible.  I just don’t understand it some days… some days like today it gets the better of me.

So please, tonight pray that Eithene with sleep and rest peacefully and PAIN FREE!!!  Pray that Jessica (her mommy) will be strengthened and blessed with peace and grace to continue to fight for her daughter.Recent Comments:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• April 28, 2010 -- Have a little talk with Jesus…
• January 14, 2010 -- New Year, new prayers…
• November 25, 2009 -- Do you believe in Miracles?
• June 11, 2009 -- Say a quick prayer…

I give up.

So I called yesterday to the Peds office and asked them to have Megan CALL IN the Tamiflu for the other two so that IF we needed it we would have it.  The lady on the phone was EXTREMELY rude and said that they could NOT do that because the CDC recommendations blah blah blah.  I was thinking to myself… yeah but I bet the CDC didn’t account for kids like Ky either?

Some days I hate being right.  Owen is still down with a fever, Ky is now down and I am counting the hours until Ross goes down.  At LEAST Troy was able to take Ky to see Megan today and she DID write for Ross also.  I feel like crap but I honestly couldn’t tell you HOW bad I feel because I am on pain killers anyhow so its just a stuffy nose and my normal old headache.  Worst of all… we have to shoot a wedding tomorrow!  Its not like I can call the bride and say “Hey sorry… we can’t spread the flu and come to your wedding…” I swear I feel like wearing a mask but I know that would freak people out.  LOL

So another amazing weekend of sickness.  Thank you Fayette County Public Schools for not sanitizing the rooms.  Yes, I think its totally unnecessary too! (rollseyes……)

Just pray that Troy and I make it through tomorrow before we crash with this thing.Recent Comments:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• August 26, 2010 -- Be Still…
• February 23, 2010 -- So it begins, Kyleigh’s next medical journey.
• January 12, 2010 -- Coming Home!
• December 15, 2009 -- One Day closer…
• October 26, 2009 -- Do not be anxious about anything…

Kate… if you ever get the occasion to read this… I thought that WE were better than that too…. and we were… we just didn’t realize it and I believe that you and Jon are too!!!!

I know that everyone rips on Kate.  She’s bossy, she’s controlling, she DROVE him away.  That is just a lie.  I do NOT care what she has said or done it gives Jon absolutely NO right to do anything that he has done.  He made a commitment to his family and he made a CHOICE.

Kate… if you are still reading now… PLEASE do NOT feel guilty.  YOU did not do this.  YOU do NOT deserve this.  Period.

I know Jon has said that he did not CHEAT on Kate.  I have to be a little candid when I say… just because there was no “sex” that does not constitute complete faithfulness.  If you kissed someone… you cheated.  If you had an “inappropriate relationship”… YOU CHEATED.

Inappropriate relationship… that is what Troy liked to call it.  Its a bit of a flowery term don’t you think?  A little like a chocolate dipped jalepeno pepper… it looks like chocolate… but on the inside it is something that is the furthest from it.  It bites you and you didn’t see that coming because you THOUGHT it was chocolate.

Watching tonight’s episode was HARD for me.  Its been a good long time since I had a really CRAPPY day thinking about “the incident” and tonight I KNEW full well going into it that it would be this way.  I knew it and yet I felt the need to continue on.  Why?  My heart aches for Kate.  Listening to her at the end of the show say… its all for the kids.  She is being strong for the kids.  She will be friendly with him for the kids.  She has to so that the kids are healthy.  Jon acted like the birthday party was hunky dory and that everything was fine and the kids knew no different.  I am sorry to tell you.  They know.  My kids knew and they were a lot younger than yours!  YOUR KIDS FEEL IT.  Do not kid yourself into thinking that you are doing a good enough job that you can hide it.  Kids have a deeper connection than that to you as a parent.  THEY KNOW.

Kate… I hope you ARE reading… You do NOT have to take this.  I hear myself in you.  I hear my own words.  I am being civil for the kids.  You cannot criticize that hooker for the kids.  What if she ends up their step mother… HAH! NEVER.  ( Just for a moment I would like to digress to a conversation that I had with “the nanny” on the phone one day while Ky was in inpatient back in October…I told her… the best woman WILL win and we ALL know who that is.  I told her I would win and I did… *can I get a bit of a victory dance ladies?*)  But Kate… please know… this is YOUR family.. YOUR husband.  Do NOT go down without a fight.  Fight for your life.  Fight for your love.  Fight for everything you have worked for.  For your children… Fight and fight NOW.  Fight hard and DO NOT roll over and allow him to end this.  You are 50% of this battle and I personally am pulling for you!  It is possible.  Look at us… trust me if WE came back from something as terrible as what was done to me… you and Jon CAN DO THIS!!!!!!!  I wish had had someone to tell me this when I was going through it.  When I was doing this… I was doing it alone.  (well with the support, prayers and fasting of a whole herd of people) But mostly me.  Kate I know how alone you must feel.  I cannot even imagine how that must be magnified by being in the spotlight and paparazzi craziness.  I cannot imagine how having to do this in front of 1 million people must feel but I can tell you… FIGHT.  With every single breath you have in you.

You know… when you marry someone… you GIVE that person your trust.  You allow them into the deepest parts of your heart and soul.  You allow them to know things that no one has every known.  You tell them your hopes and dreams… you share with them your deepest fears and when that person, the one single person in the world who is supposed to be everything to you… betrays you… there is no pain that can describe that.  It the darkest, most lonely, aching place that a human soul can go to.

I really have always felt that I was BORN a fighter.  I have not had an “easy” life.  There have been many things in my life that could have “messed me up”… but they didn’t.  Even now… I fought and won.  I fought with the biggest allies on my side…

So tonight…

My dearest Heavenly Father, You are the maker of all things.  You are the winner of ALL battles.  You are the ordainer of marriage and the Father of Kate and Jon too.  Father God, please lay your hands of healing and peace on Kate.  I watched those last episode and I could FEEL the anger.  I know the sting of that rage.  Please God wrap your arms around her and allow her to fall on you.  And for Jon Lord… I pray that you would place a sense of conviction in his heart.  For whatever this bad decision it is that he has made.  Also allow HIM to know that there is peace and forgiveness, mercy and grace and that broken things CAN be mended.  Allow his heart to be turned toward his wife and kids and that he will come to understand his godly place in that family as the father and husband he needs to be.  God empower him to step up and DO THE RIGHT THING.  Because there is a right and wrong to this… God please allow the right to prevail.  And for Kate God… peace and grace.  God give her the will to fight for her husband and her family.  Allow her to SEE that this life… is HERS… and hers alone.  It is not to be shared with another.  Give her the strength and the peace of mind to continue on.  Give her the heart to PRAY for her husband and I am not talking.. “please God” prayers.  God I pray that EACH of these two would find themselves on their faces before you pouring out their hearts.  I pray God that you would turns their hearts to each other and that you would begin to heal them TOGETHER.  I pray that your would mend their hearts TOGETHER.  That you would bring them peace TOGETHER.  I know it is NOT your will for any marriage to be broken.  As your word says… we CAST DOWN every stronghold in their lives that would bring evil against… we declare that things will CEASE.  We stand on your promise that you KNOW the plans you have for us.. plans to promise and keep us… plans to give us HOPE and a future!  God I stand TONIGHT with every person who is praying for Jon and Kate and claim their marriage for the good of YOUR kingdom….. in the name of Your son, Jesus, we pray…………………………………………………………………………………………………………………………… Amen.Recent Comments:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• August 26, 2010 -- Be Still…
• June 16, 2010 -- Today I read a magazine.
• December 5, 2009 -- Believe….
• October 26, 2009 -- Do not be anxious about anything…
• August 14, 2009 -- “Never a ship… sails out of the bay

It was pretty rigorous for Ky as many of the procedures were invasive… we started with Lab work, then off to Renal Ultrasound (to check on the kidney beans), then off to Flouroscopy for a VCUG, then to Urology for formal Urodynamics studies and finally ended with a visit to Dr. Alam. I have to say that for all of our heated words and exchanges… Alam and I are seemingly fine now! LOL I think we were ALL so frustrated that it was just a very intense situation and there is really no one who could have handled it any better.

The results of today are mixed. Good news is there will be NO BLADDER Augmentation surgery. In the words of Alam… “this is completely OFF the table for now”. That is a HUGELY invasive surgery that forever changes the structure and function of a bladder and we had been holding our breath, for TWO YEARS, to find out if it would be needed. As of today Kyleigh’s bladder, while still large, is GROWING! Not just expanding into a floppy, unkempt muscle. Not only that but the SHAPE of her bladder is largely normal now! All the pics you see of “bladder” shapes… hers ALMOST looks like that! So all of our hard fought efforts have made a huge difference there. Also… it is almost certain that she will need a ureter reimplantation to remedy the next part of the post……….

Bad news is the kidneys… we don’t yet know the full extent of the damage.. those numbers will be in later this week… but the reflux which we thought was remedied by cathing, and ditropan AND gentimyicin irrigations… is still there and worse now. She has been upgraded from a 2/3 to a FIRM Grade 3 reflux in the left kidney. Her right kidney is still hanging out, with its extra lobe, and no reflux. We have yet to figure out how the GOOD kidney is the one refluxing…. sigh.

We won’t know the results of the full function testing until the end of the week but I could have literally burst into tears when I saw that kidney illuminate on the flouro screen. Even before the radiologist said it… I knew. I have seen enough flouros to know. It took a medium amount to cause the reflux but nothing even close to her bladder capacity… This also means that it is very likely that her reflux has never “gone away” but is always there in some underlying way… we just are not catching it on the VCUG’s… This makes me feel very disheartened. I know what we do every single day to “save the kidneys” and if THIS is not enough… what is?

Ending with more good news though, her bladder spasms are 1/3 of what they used to be and her pressures have gone from a 121 (4 times normal) to 33 now!!!!!!!!!!!!!!!!!!!!!!!!!!!!! That is HUGE… this means that she is not damaging her bladder and is running LESS of a risk of refluxing often! So… I am holding on to hope that her kidney labs will come back better than we expect. I just NEED those tests to show decent function… I NEED it. ME… not her… not the Dr’s… ME. I need those to be ok.

Overall it was a good visit. It was good to see Alam on better terms and I think that he is fully convinced that I know the entire universe of Urology kids as he pointed out that he is now treating two MORE of our friends! (Suzanne and her son Parker, Lori and her son Benji)… We had a good laugh about that. I was bummed that I did not get to meet up with our friends Lori and Benji who are on the 6th floor right now but our day was just too much and Ky was in a BUTTHEAD mood… we just needed to be home!

So… if you are praying this week… praying for the old kidney beans. Thank you all for all the kind emails, messages, phone calls etc… we truly appreciate the support and prayers. Keep them coming Recent Comments:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• January 3, 2012 -- Blessed.
• January 12, 2010 -- Coming Home!
• January 6, 2010 -- First SNOW!
• November 8, 2009 -- Christmas Card Preview!
• October 31, 2009 -- Carving and Couponing…