Roughing up my heart....

Ugh... I don't even KNOW what to title this post.... *sigh* I guess I'll just figure that out at the end. Here we go:

John is scheduled to have neck fusion surgery the third week of December. For those of you who are thinking, what? who? how? why?  here are the details... the rest of you can skip to the bottom if you want.  Just scroll down until you see the bolded words Well so here we are....

If you've been with us for the duration, then you know that 4 years ago John had to have brain surgery to relieve the symptoms of a chiari malformation. Because of that initial surgery, disk degeneration (which he has always had) is worsening and manifesting in some icky symptoms (he is on week 3 of a CONSTANT headache right now.... he is losing strength and size in his left arm... he has pain radiating from his neck all the way down his arm...) Today they told us that left untreated it could eventually result in him losing all function in his left arm.  [Okay that's pretty scary.]

I believe it was back in July of 2012 that we first started hearing about this idea of neck fusion, and then again this past summer it came up. As this appointment to discuss it again approached we started hearing rumors (which are still as of now unconfirmed) that the lovely Affordable Care Act is going to DECIMATE our current AMAZING insurance benefits and knock us down to what all the rest of you have been dealing with for insurance [not being rude, just saying that we have had FABULOUS health insurance every since John changed jobs.... if the rumors prove to be true that will be a thing of the past come January 2014]....  Sooooo these rumors got us thinking that we might need to just DO THIS before we cannot afford to do it because of our "Affordable Care".... When they told us that part about the possibility of it progressing to the point where he would not even have any use of that arm, we were kinda like, "Okay let's get this puppy on the books!"

Again for those of you who want the details.... the gory details.... keep reading... the squeamish... well you've been warned.

So we have been told that this surgery will be MUCH less invasive, painful, difficult than the last one... [although I have to tell you that back in 2009 I DISTINCTLY remember Dr. Ahuja saying, "This is the best brain surgery to have. If you have to have brain surgery, THIS is the one you want to have because it is the easiest one."  WHATEVER!] apparently because they will go in through the front of his neck, moving his muscles to the side instead of cutting through muscle (like they did in the back of his neck) it should result in a much easier recovery. They will be fusing his C4 through C6 vertebrae together in order to give his nerves room to "live" in there and immediately relieving his pain, weakness in his arm and stopping any further degeneration.  Here's the visual they gave us of what they'll be doing.... that black thing is a titanium doo-hickey (yes that IS I think the technical term... at least as I heard it)... underneath the doo-hickey will be some plastic thingys that replace his degenerated discs.

Well so here we are.... walking down roads... living out scenes... asking for prayers... explaining medical terms we have become too familiar with.... all like we've done in the past....  In the short span of just 8 hours since I found out, I have been through the following phases:

Phase 1: I can do all things through Christ Who strengthens me....

The first introduction of this concept of a second surgery actually happening, left me almost cocky and too assured.... "We can do this!  It's easier than the first time. So much is different. We are different.  This is going to be a walk in the park!"  It was in this phase we told the kids, and they pretty much seemed to take it in stride just like I was.

Phase 2: I can do all things through Christ Who strengthens me....

After we told the kids, John and I laid down to try to get a little rest. I fell SOUNDLY asleep, slept too long and arose late for cheer practice and a bit discombobulated. At this point the realization that we were indeed going to do this AGAIN was hitting me and I was left feeling a bit dazed and confused by the punch that realization walloped. I raced off to practice, forgetting Regan's shoes, forgetting a cup of the coffee I asked Noah to brew for me, and forgetting about a certain female situation which I will provide no more details of in case my brother is reading this blog for he will SHOUT, "FOUL!!! TOO MUCH INFORMATION!!!" (In fact he is probably already shouting that.) I drove to practice kinda forgetting where I was and where I was going for a little bit. I felt as foggy and hazy as the weather around me.

Phase 3:  I can do ALL things through Christ Who strengthens me.

I entered phase 3 as I pulled in the driveway after practice. I sat in the car for several minutes sobbing. "God I know I can do this with you. God don't leave my side for a second these next few months. God I NEED you!" screaming from my soul! My weeping left me in a place of quiet resolution. I can do this again. I can get through ANOTHER surgery. I can watch the man I love endure EXCRUCIATING pain. I can watch my dear babies trying to be strong with terror in their eyes. I can DO this.  And that's when God gave me my analogy.

When the surgical assistant was explaining the surgery to us, he said that at the end of the surgery they will "rough up" the bone (vertebrae) around the fusion site. He said they do this to signal the body, something is hurt here we need to fix it.  Then new bone will grow to "accept" the titanium doo-hickey and strengthen up that area.

God is roughing up my heart right now.  He is signaling my spirit that something is hurt and needs to be fixed. Over the next few days, His Holy Spirit will rush in and build "new bone" on my heart to accept this new situation and incorporate it into my reality and make me STRONGER.

As is typical when I come to you through the words of this blog... we NEED your prayers... for the big... for the little... for the seemingly inconsequential...

John is a little nervous/weirded out by this whole thing. I know he DESPERATELY wants his pain to come to an end but the fear that this won't do it or could even make it worse is assaulting him a little.

Noah seems okay right now, but he is the one ALWAYS hardest hit by John's health issues. #1 because John is TRULY his best friend and #2 because he tries to "step up and be the man" when John is down for the count and that is a tough thing for a 9 then and now almost 14 year old to do.

Details... our dr. is doing surgeries at a different hospital now we don't know if it is covered by our insurance.... we are hoping that the vacation time John has available will be enough to cover his recovery time... this will be happening RIGHT in the middle of cheer season, Christmas, etc... not the best timing in some ways but great timing in other ways.

I will try hard to keep you in the loop, but I expect that you will likely only hear from me when I'm begging for prayer or processing the tangle of emotions I am going through.

Thank you friends for your prayers and for always caring enough to walk with us through the dark times.

Be Still...

Over the past year of my life, I have been in a battle for my family, my sanity, and my very life.  (read more)

[btw... this blog was written and submitted several months ago... No worries. John is doing well with no more recent flare-ups.  As always thanks for your prayers!]

The devil

For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.  

Ephesians 6:1

Last night as I raced into town for my sister's bowling birthday bash (it wasn't really called that.... I just made it up... Really it was our crazy family bowling, eating bar food, and singing "Happy Birthday dear Cori" as loud as we could at the local bowling alley), Noah asked a question that chilled my soul.  Before I reveal his question, let me set the stage.  These details are not those I have shared with any yet... even John will be surprised at their revelation.  

For the past two days, Satan has been attacking me HARD.  He has been whispering to my soul that I will soon be a widow.  I know with all of my heart that this is the enemy attacking me.  I know that my struggle is "against the powers of this dark world and against the spiritual forces of evil in the heavenly realms."  I know (as I recently wrote in The Gentle Leader), "If Satan can get into your head and make you worry, doubt, or fear... If you give just an INCH of your brain to worry, doubt, or fear... It is over!  The worry, doubt and fear control you. "  I know that since I learned so many lessons (which I am LIBERALLY applying) the last time we went through this brain issue, (especially:  God will provide ALL our physical needs in MIRACULOUS ways) that Satan is just looking for a new way to torture me.  I know!  I know!  I know!  All of this... yet still...

Finally, yesterday  I asked just my mom, dad, and sisters if they would increase their prayers for me only hinting at the way Satan was torturing me.  Then it happened.  We were just driving down the highway, chatting about how shockingly we were going to be late to Riri's birthday party, when after a brief silence Noah asked me, "Mom, can someone die from a Chiari Malformation?"  It was as if Satan himself had punched me HARD in the gut.  I paused a second while I caught my breath, and then replied, "Hmmmm.... I don't think so."  Because I DON'T think so... Death from Chiari Malformation has never been presented as a possibility to us.  

Here's the thing:  I could have dismissed his question as nothing.  I could have reasoned it away with the reminder that just yesterday we attended a gut-wrenching funeral for a six-month old baby.  I could have just told myself it was a coincidence.  However, here's the thing, I don't believe in coincidence.

Be alert and of sober mind.  Your enemy the devil prowls around like a roaring lion looking for someone to devour.

I Peter 5:8

I believe in the devil.  I believe he is a WICKEDLY smart being.  I believe he wants to destroy me.  I believe this not just because the Bible says it, but also because I have stared him in the VILE face before.  I have felt his sickening breath on my cheek.  I have HEARD his vicious words hurled at me in attack.  I know that "the devil prowls around like a ROARING LION looking for someone to DEVOUR."  (emphasis mine)  

When I heard those words from my baby's mouth, I knew the attack was being taken to a higher level.  Now the worries weren't just clanging around in my own brain.  They were out there ALOUD!  And they were in my child's brain as well.  I immediately cried out to Jesus.  

"Help me Lord!  I can't fight this anymore!"  my heart screamed out. 

Reveal it my child, was His gentle answer.  

"Reveal it???  Are you CRAZY!  I can't reveal THIS!  People will think I'm nuts because I believe in the devil.  People will judge me for fearing my husband will die.  My husband doesn't need to hear I'm afraid of this!"  I screamed from my heart.

Reveal it my child, He gently repeated.

I wanted to fight some more.  I wanted to rail against it.  However, I have known ALL too well the ill-effects of sweeping Satan's attacks "under the carpet."  See what happens when you do that is they get bigger and bigger until they devour you.  See that's what he wants.  He wants us to try to fight Him alone.  He doesn't want to be exposed!  

So guess what???  Anything Satan wants, I'm gonna do the opposite.  I'm exposing that slimy little liar.  I am putting it out there:  I am afraid that John is going to die and leave me all alone.  Truth be told I have been fighting this battle since the moment I received that first call, "John said he feels like when he had that stroke-thing."  I need you to pray for me!  I need help fighting back the enemy because he is NOT giving up.  

One last comment... it is with regards to my fear that "People will think I'm nuts because I believe in the devil."  Here it is... It is not even my words.

It is the greatest art of the devil to convince us he does not exist.

Charles Baudelaire

He is real.  He does exist.  But unfortunately for him, his existence doesn't mean squat up against the power of our God.  So please pray.

Like a bad, bad dream....

[I apologize in advance.  I will NOT be proofreading this blog.  I am typing it as fast as my fingers can fly so that you all know how to pray and then I am GOING TO BED.]

It was all so surreal... I had JUST gotten off the phone with John.  He was having a busy day trying to fix a pump or something or other, and I was having a crazy day of dealing with temper tantrums.  I hung up and got the kids in gear for a quick trip to the library.  They were standing there with books in hand when my phone rang.  It was John calling me back.  Only when I answered it was not John on the other line.

"Is this John's wife?"  the voice asked.

"Yes.  This is Jami."  I replied.

"This is Keith.  I work with John.  Something is not right with him.  He said it feels like when he had that stroke thing.  Public Safety is on their way here."  He reported.

My head started swimming.  I didn't even know which thought to land on.  I can't do this again.  Stroke like symptoms what does that mean.  I can't do this again.  Should I get to the city.  I can't do this again.  What is going ON!?!?!?

In a flurry of activity, I called the neurosurgeon, called my mom, and returned the call to John.  Public Safety answered his phone and reported that the fire department had been called and paramedics were on their way.  After hanging up, with the children getting in the minivan, I stood in my living room starting to hyperventilate a little.  I can't do this again!  I can't do this again!  I can't do this AGAIN!

The adrenaline kicked in and my mind started flying.  I have a dog now what in the heck am I supposed to do?  It's going to take FOREVER to get to Milwaukee.  The library's going to send back the books I had on hold.  Rational and irrational thoughts abounded.  I went to ask the neighbors to let Kiah out.  I couldn't stop bawling the whole time I was talking to them.  I said goodbye to my aunt (through my tears) and agreed to call her as soon as I knew anything.  I climbed in the car and started driving.

I called about a jillion people on my way into town... I had to try to arrange help with the children without either of my sisters, my father, or my mother available.  ARGH!  Finally taking charge because I was not making decisions, Amanda left work and told me she was meeting me at the hospital.  I arrived at Mt. Sinai.  (Do you know where Mt. Sinai is??? It is NOT in a good part of town!!!  I asked the receptionist if she thought it would be okay for the children to wait for me in the waiting room while I went back by John.  She said, "I wouldn't leave them there.  We get some ODD people in here."  Alrighty then... coming with me... that's what they are doing.)  We got to John and he was "off."  Speech was slow.  Left side weak, numb and tingling.  I could just TELL he was not right.  Mt. Sinai contacted Dr. Ahuja who told them to IMMEDIATELY transport John to St. Luke's.  Another ambulance ride, another flurry of calls, and a few tears later I arrived in the Neuro ICU.  It was queer and strange like stepping back in time.  In the weirdest of all coincidences the nurses who were the first two nurses to treat John after brain surgery were BOTH on duty and BOTH helping John when I walked in.  The aide on duty was also the same, and later in the evening I ran into Sarah Prusinski a former student of mine from HCS.  She is a nurse on that unit now.

They immediately whisked John away for another CT.  Jane, Dr. Ahuja's nurse, accompanied us and explained the procedure... blah blah blah to see if he's had a stroke and blah blah blah to make sure his brain is getting enough oxygen.... blah blah blah or it might be his Chiari Malformation is causing a problem.... blah blah blah bulging discs blah blah pinched nerve....  BLAH BLAH BLAH BLAH!  The pointed me to a waiting room and left me alone while John went into the imaging room.  Finally finding a little privacy, I just let the tears wash down my face.  What am I doing here?  How did this happen again?  We were just coasting along thinking the worst thing was two days off work now and again and then WHAM!  What in the world is this and how in the WORLD will I make it through MORE?

The nurse finally returned to report that they had ruled out a stroke which was VERY good and was apparently the reason for all the fuss and rush and blaring ambulance lights.  We slowly and calmly returned to the Neuro ICU.  Erin (our beloved nurse from last time) tried to get John comfortable and set up; however, by now he was approaching MASSIVE amounts of pain because he had missed his afternoon meds.  His neck muscles were tightening and his headache crescendoed.  At some point Amanda arrived.  (She had taken the kids from Sinai to get food and then go to my mom's.)  Meds were ordered.  An MRI was prescribed for tomorrow morning (a fact that really bothered John because that lunatic actually thought he was going home with me tonight!)  All sorts of activity finally settled down and Amanda left to get us dinner.

After eating and taking meds, John promptly fell asleep.  I waited and waited for Dr. Ahuja to arrive.  Turns out he was stuck in surgery.  Finally at 9 p.m. I left to go get the kids and return home.  After the grueling one hour trip home, I arrived to find my doggie WIGGING out!  I grabbed her collar and rushed her out towards the leash.  My flip flops hit the frost on the deck and my feet FLEW out from under me.  THUD!  My head connected with the boards of the deck before any other part of my body did.  Pain EXPLODED through my skull and somehow keeping a firm grasp on Kiah's collar, I just laid there staring up at the stars sobbing.  My HEAD hurt!  My husband was in the ICU!  This day SUCKED and I just wanted to crawl into someone's arms and cry.... yet I was the only viable adult in this crazy house tonight.  I triumphed over the urge to just lie there crying until my tears froze to my face.  I struggled to my side, hooked Kiah to the leash, and let Noah help me up.

My head is STILL throbbing.  I need to figure out what to do tomorrow.  I made all these plans for the kids so that I could be at the hospital, but they are contingent upon me leaving the house by 7:30 a.m.  and that is NOT going to happen.  Not sure what will become of tomorrow....  All I know is this... as much as this day socked me in the gut and left me lying on my back head, heart and soul throbbing, my God is STILL on the throne.  He is STILL in control.  And He is STILL good, right, just and true!

As I drove home tonight it was like K-love had a playlist entitled "Encourage Jami through her SECOND bout with her husband's brain issues."  Song after song fed my soul.  I belted out praise with one hand on the wheel and one in the air.  I do NOT feel that I can make it through this whole, awful scenario again, but I serve a God who can move mountains so I trust my soul and not my feelings.

Please, please, please people of God, get to praying.  Please pray that the doctors will figure out (and TELL US) what is going on with John.  Please pray that the strength will return to John's left side and that they will get his pain under control.  And please please pray for this frail servant of God with a soul of steel.  I do not FEEL that I can do this again but I KNOW with God's help and your prayers I can walk through ANYTHING.

Thanks in advance for your prayers!
Jami

The many facets of God's will (with a rabbit trail into the dark before the morning)...

So often in life I find myself amazed at the fact that God's will has SO many facets. There are so many different aspects of His will, that when you dive in it takes awhile to appreciate all of them. Yesterday, as I sat on my driveway after two solid days of family time, watching my husband throw a frisbee with the kids, the fullness of one facet of His will struck me.

I believe with all of me that moving out here to the boonies was God's will. Initially it seemed like a dream that was "too good to be true.".. The slightest of all rent increases to move to twice the house, 10x the yard and the promise of finally OWNING a house. God brought it all together with lightening quickness which also made it seem "to good to be true."

Before we even moved (but AFTER we had already "signed our names" in all the appropriate places) our dream came true took a turn for the nightmarish. There was this miraculous thing sitting on our horizon, but Satan wasn't going to let us have it without a fight. We doubted. We worried. We hemmed and hawed, but through it all His voice kept saying, "Proceed." The fires got hotter and hotter. Stroke, Chiari Malformation, brain surgery, out of work for months... The first months in our new place brought all sorts of doubts: maybe we weren't supposed to move way out here so far from all our family and friends... So far from civilization and our renown brain surgeon.. Maybe we would be evicted because we wouldn't be able to pay rent now... Or maybe even worse it would no longer be just our dream house which was threatened but this little family we had built would lose its Daddy.

Its like that sometimes with God's will. As you start down the path to a great breakthrough or momentous victory Satan attacks harder (because he knows you're nearing something great). I heard the BEST song the other day, The Morning After, by Josh Wilson. This lyric stuck with me:

'Cause the pain that you've been feeling

It's just the dark before the morning .

It is always darkest before the morning and sometimes we have to fight REALLY hard to get to God's will for us. Satan's not gonna let us have it for nothing, AND I believe that is part of how you know that what you are doing is God's will: Satan will RAGE against you because he does NOT want you to be in the center of God's will.

Sorry I took a little rabbit trail into the dark before the morning... I need to get back to the many facets of God's will....

So fast forward 11 months from the momentous day we moved in here. We have traveled through all sorts of dark, scary valleys. We have triumphed over so many roadblocks Satan put before us. We are firmly in this house, eleven months closer to being homeowners. Our children are THRIVING in an environment where they have a HUGE yard and more space to live. But yesterday God was focusing my eyes on another facet of His will for this place! Moving to the boonies wasn't just about good financial decisions and a better home/yard for our children. It was about freedom for this family to BE A FAMILY. See back in Franklin we had a happy FULL life. Yet we sacrificed all our "family time" to service and socializing and GOOD STUFF, but again it left not much FAMILY TIME.

Out here in the boonies we are isolated..... Even a bit lonely at times... Yet we are free from some of the things that used to occupy so much of our time and attention.... Here on the threshold of entering the tween years we are poised to make our best steps or fall flat on our faces, and I believe a successful passage across the doorstep to the tween and teen years includes TONS of time spent as a FAMILY. The Daddy of this family isn't home much so when he is here we need to do stuff TOGETHER. Our isolation out here in Butt Nowhere, WI helps us do that. While I feel a bit like a fish out of water, and I miss random NDY kids dropping over, sharing nearly every meal we had with a guest of some sort, former cheerleaders popping in day and night, I appreciate the fact that without those things there is more time for the SIX of us to be the six of us.

So whether you are in the dark before the morning or are appreciating another facet of His will for your life... HANG ON! Take a look around you! Even the dark before the morning can be beautiful if you look at it right and His will has so many different facets to be appreciated.

The sound of silence...

Silence is not really something I know much about. I've always been a gregarious person with a HUGE mouth. Every parent/teacher conference my parents ever had included the words Jami, talks, and a lot. Most of the time I'm not sure I could even pick silence out of a line up. My life is SOOOOOOOOOO loud. We always joke we are "The Loud Family," but it really isn't a joke. My house has a constant din that seems to be the soundtrack of my life. Last summer when we moved in to this quiet, country neighborhood in the boonies, we kept saying, "There goes the neighborhood," because we are ANYTHING but quiet. However, this past month I have really been called to a time of silence.

I'm not entirely sure why, but God called me to silence my fingers this past month. At first it started out as just busyness. To my normal load of mother of four with a husband still recovering from brain surgery who telecommutes and homeschools, I added caring for an elderly Aunt in my house full time and traveling to the city to care for my elderly Grandmother twice a week. Plus I was planning a HUGE birthday gala event for Hannah. Finally, John and I were walking through a bit of a valley (not really a valley... more like a culvert) of fear related to a significant increase in his pain level accompanied by a return of some of his Chiari symptoms. (Visit to the Neurosurgeon earlier this week put all our fears to rest, and switching up of his medications has eased the symptoms and pain.) This all made for a busy time which did not allow for much blogging. I felt a little guilty about leaving you all hanging and not blogging; however, after a little time I realized that I had NOTHING on my heart to blog about. It wasn't that God wasn't moving all around me, but I could tell that there was nothing He was pressing upon my heart to speak about. Then earlier this week the dandelions burst open the dam in my soul, and I could feel my writing pressing upon my heart again. I'm happy to be back, but I'm also contemplating what all that silence was about.

I have a sneaking suspicion that the silence was to shore me up. I am about to enter several months of "one year ago todays." Anniversaries of the most difficult things I have ever in my life dealt with will be hitting me over and over again this summer, and I suspect that (knowing me more intimately than any one else does) my Creator knew I needed a little silence to rest. Only time will tell if that is the truth or not, but I have a sneaking suspicion I will look back on April 2010 as a fortifying time.

However, I digress.... the point is what lesson should the sound of silence bring? To someone like me who can hardly find silence in the din of children, work, and other related chaos, it sometimes becomes a dirty word. Silence! Ha! It tastes a bit bitter like the word Atlantis to the treasure hunter. I know it exists, but my inability to find it makes that word feel icky on my tongue, in my mind. But silence can be the Holy Grail to your soul. In this case, I feel the blog silence was to strengthen me. See as much as I love to write, and as much as I love all of you, sometimes my blogs bring me nothing but trouble. It often feels like no matter how much I share someone always want to know more. Furthermore, sometimes my intent... the moral of my story... is so completely misunderstood, I am left feeling like a failure for not getting my point across more appropriately. Yet while I suspect the main purpose of all this silence was the shoring up thing, there was a hidden agenda too. I discovered that while I hear lessons from God all around me, sometimes the chaotic din is blocking out lessons too. The little lessons, the quiet things are easier to find in the silence.

Well consider yourselves forewarned.... the silence is over! I feel blogs backing up in my heart like cars in a traffic jam on a Friday afternoon. Yet I'm hoping to hold on to the fortitude God brought through this season of silence and striving to remember to seek out the silence with my whole heart so that I can hear the itty bitty lessons He has for me too.

Hope you have a GREAT day and that you can find a little silence today too.

One foot in front of the other

Seriously? Seriously? I think the title for this weekend should be, God Pampers Jami. Just THIS weekend, I/we received the following gifts from God and His people:

*help with running errands
*time spent catching up with my step-daughter
*a mini-spa day in my own bathroom
*help cleaning my house
*4 dinners prepared for me
*time spent catching up with a former cheerleader
*a COMPLETELY ordered and cleaned house (which the kids TRASHED within 2 hours of returning home last night….oh well it was nice while it lasted)
*monetary gifts (one which COMPLETELY paid the rent which is due in 3 days)
*much needed time reconnecting with my family
*the blessing of reconnecting with our NDC church family
*a chance to run to the grocery store ALL BY MYSELF

It all got me thinking about how the night is always the darkest just before the dawn.

My blog from Thursday revealed the deep desperation of my soul. I was depleted, exhausted, completely wrung out and DRAINED. While I really never would “throw in the towel,” I desperately WANTED too! I desperately wanted to just toss down my dishtowel and crawl in my bed pulling the covers over my head and crying and drooling until this all went away. Friday dawned and more of the same. I developed a wretched headache as the day wore on. I had an invitation to a girls’ night with friends from high school I haven’t seen in 20 years. I wanted DESPERATELY to go, yet I just couldn’t gather the strength. Still in my stubborn head I tried to make it work, until a bunch of work rained down on me making it impossible for me to finish up in time to make it into the city for that. My night seemed so dark and deep. I didn’t see how I was going to keep walking through it.

Then like a pin prick of light FAR in the distance, I got a text from Amanda. “How’s it going?” I asked her if she wanted the reality answer or the sugar-coated answer a step-mom should give. She said, “Give it to me REAL.” I told her it was pretty brutal. She offered help and the day started to dawn on my dark night. What followed was an AVALANCHE of relief and brightly dawning day (see above list). This weekend replenished me and rejuvenated me more than I could have imagined was possible.

Here’s the thing: we never know if this part of the night is the darkest. When walking through it, I didn’t know. Was the point I was at on Thursday night the bottom of the barrel? No. Okay then Friday morning when I thought my head would explode? No. Well how about Friday night when the disappointment over having to miss the little girls night reunion. Yups! There is was… the turning point. But until the light starts to dawn, there is no way to know how long the night will last. So what are we to do? What is the word from God to tell us how to proceed? When the night seems so long? When the darkness just WON’T break? I got the answer from my pastor, “Just keep putting one foot in front of the other Jami.” Until you see that first pinprick of dawn, you just have to keep putting one foot in front of the other. It is hard. It is scary. You can’t see where you’re going. You’re tired. You’re READY for the dawn. But until that pinprick of light breaks through, JUST KEEP PUTTING ONE FOOT IN FRONT OF THE OTHER!

So! The Kastner’s made it through that dark night. I am sure there are MANY more to come even just in this chapter titled, “Chiari Malformation.” Right now I’m praying this light of day part lasts for a little while so we can have a little rest. But when the darkness crowds in again, I will try hard to remember: one foot in front of the other…. one foot in front of the other….

completely exhausted

I purposely didn't capitalize anything in the title of this blog... too tired to hit my shift key unless it is rote and without conscious thought. I am so far beyond exhausted, I'm not sure I can even describe it to you. I cannot imagine how John feels!

We left our house at 10:30 a.m. and headed to Hartford for an appointment with John's primary care physician. I waited in the car with the kids while John went in to get the thumbs up for surgery. He was cleared! YIPEE! So then it was off to Milwaukee for an appointment with the neurosurgeon. We stopped in Menomonee Falls to hit the bank and get some lunch. It was a very nice quiet family time (not something we get a lot). I sat there thinking, "It's kinda sad that it takes a trauma to get my family to slow down and spend a little time together."

Dr. Ahuja's office was TRYING, TERRIBLE, and bordering on HORRENDOUS! Our appointment was at 2:30... we were early. The kids were squirrley. Hannah, Elijah, Jeremiah and I sat out in the hallway because the waiting room was so crowded there were no seats left for us. Finally we got in a room and waited at least another 30 - 45 minutes before seeing the doctor. John was "marked for surgery." As we walked out of the office, the nurse looked at John and said, "Your children are the most well-behaved children I have ever seen." I looked at her like she had just dropped off of Mars.... "These hooligans?" I thought.

On the way home, another trip to the bank this time with a LOOOOOOOOOOOOOOONG wait. Then a stop at Target for toilet paper and a grueling drive home through rush hour. As I sit here at my puter typing, I literally feel like I am going to fall over. I DESPERATELY need to get some groceries in this house, but I am too tired to go out. We have cereal and milk, and two more meals of butter noodles is NOT going to kill anyone. I need to crash soon.

SOOOOOOOOOOOOOOOOOOOOOOO.... we still don't have a surgery time. The nurse said the time will likely change 10x between now and Tuesday; therefore, they will just call us Monday to tell us.

A few more details:

1. If you are coming on Saturday to our chili/prayer/fire fest, please bring camp chairs. Also if you feel led, you can bring a dessert and/or some soda.

2. Hospital...we've been deluged with offers to be at the hospital with us during surgery. It is John's request that friends and family PLEASE refrain from coming to the hospital until he is feeling up to it. You can contact Jami via cell phone/text/e-mail/facebook if you want to come visit. I will let you know if he is up to visitors yet. I will also post to twitter and this blog when he is ready for visitors, but even still before you come please call/text/e-mail so we can try to limit the number of people there at one time.

3. If you'd like to send John an encouraging e-mail, his e-mail address is: jkastner3@gmail.com


How to pray:

1. John's dizziness has increased significantly. He is also very fatigued and weak. He has developed a stutter/stammer which is a bit concerning to the doctor. He can't explain that as a sign of Chiari Malformation. I'm not a doctor, but in my humble opinion, this is probably just because he is SOOOOOOOOOOO exhausted today due to such a long day. All of this is very frustrating to him and results in one or two temper tantrums a day (FINE! an hour!)

2. Jami: I am exhausted. Haven't been sleeping well. Trying to smush in a TON of work (I'm the only breadwinner right now) and all of the scheduling of John's doctor appointments and child care, also having to mediate in SEVERAL wars over all of this brain surgery nonsense. I am wiped and really, really, really need to sleep tonight.

3. Kids: will be shuffled around from relative to relative next week (with one dear friend thrown in for good measure).... Wednesday is their first day of AWANA... I'm thinking I will make the trek all the way back up north because I don't want them to miss this.... Please pray for as much normalcy as possible for them next week.

4. Continued provision for us financially and practically.... bills, meals, laundry, etc.... I am too tired to wiggle much less think about some of these things.


In closing, you know whenever I have prayed for people in these types of situations before, they would say, "Your prayers are such a blessing." "You will never know how much the prayer support means to us." "It makes all the difference to know so many are praying for us." I would always think.... "Whatever! It's the least I can do! Spending a little time in prayer for you who are suffering so greatly." Finally, I "get it." People all over the country are praying for us. Strangers we just met. Entire churches of our friends. And words cannot express how much that means to us. To know that all over the country (possibly even the world) our names are being lifted up by so many is humbling and encouraging. Please continue to pray....

Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.
I Corinthians 12:8 & 9

Update on John

Well we arose at 4 a.m. and left Iron Ridge by 4:30 a.m. Once we arrived at St. Luke's all started moving very quickly. The angiogram was completed without any complications. The doctor met with us to report that it was just as he suspected: the cavernoma was nothing to worry about. The MRI from Friday, however, revealed that John's Chiari Malformation was causing a backup of fluid in his spinal cord. After recovering from the angiogram, we headed up to Dr. Ahuja's office and waited FOREVER to see him. Basically, John needs to have the surgery. Many people with Chiari Malformation need no treatment at all, but the rapid onset of symptoms John has had coupled with the fact that his symptoms are not resolving themselves, indicates to Dr. Ahuja that John needs the decompression surgery..... sooner rather than later. We are pretty sure that he will have surgery next week Wednesday. John is going for a second opinion this Thursday; however, it seems pretty clear that he will hear the same diagnosis.

SOOOOOO! Rally the troops! We need your help! Of course and OBVIOUSLY your continued prayer support is VITAL to us. We need guidance and wisdom for the surgeon and all medical professionals who are on John's case. We need peace and calm for our entire family. One of our big concerns is finances how will we pay the bills with John out of work; however, today we really came to grips with the fact that we have to in faith rely upon God for that . Once we came to grips with that, we realized that we both have other underlying concerns: this is BIG surgery, what if something happens? John is NOT good at taking it easy, how will he rest enough to recover? Plain and simple, gut-wrenchingly honest, we are both VERY scared. So please continue to pray.

Some practical ways in which we could use some help:

1. We are having an impromptu prayer meeting/chili dinner on Saturday night. We wish we were inviting y'all to come see our new abode under better terms; however, life doesn't always work out the way we wish. We would like to invite anyone who'd like to come pray over John with us. Since it is such a long way for most of you to drive, I will be making a HUGE pot of chili to feed peops, and we'll have a bonfire as well. If you'd like to come, please let me know via blog comment/text/voicemail/e-mail so I know how many people to expect. Arrive about 5 p.m. We'll pray for John after we eat and before we start a fire. Also our address is:

W2548 Nevada Heights Rd
Iron Ridge, WI 53035

2. The kiddos... if surgery is next week Wednesday, we could really use some help with the kiddos. I already have Friday covered. But I need helpers with Wednesday and Thursday. If you would like to have the Kastner children at all, let us know (don't be afraid, they really aren't their normal blogable selves for anyone other than their mother).

Information from the Neurosurgeon

Well John has two things wrong with his brain (I know, I know you thought there were many more than that).

1. Cavernoma – he has a spot on the left side of his brain which the neurosurgeon suspects is a cavernoma. Apparently a cavernoma is a leaky blood vessel. The doctor does not believe this is what is causing his symptoms: right side weakness, headaches, vision problems, etc… However, this area must be looked at more closely to confirm the doctor’s suspicions that it is not the main culprit.
2. Chiari Malformation – John also has a Chiari Malformation at the base of his brain. Basically, his brain is sinking into the top of his spinal column and putting pressure onto his spinal cord. The doctor suspects this is what is causing the symptoms. The solution for this is brain surgery.

What is the gameplan? It’s gonna move pretty quickly. Apparently the quicker this is resolved the more likely that John’s right side weakness and other symptoms will be resolved and not be permanent.

1. Tomorrow he goes to Hartford Hospital for an MRI of his cervical spine.
2. Monday he goes to St. Luke’s (in Milwaukee) for an angiogram of his brain.
3. Thursday we go back to the neurosurgeon to see if brain surgery is the recommendation.

Prayer, prayer, prayer, prayer, prayer! We need PRAYER!

1. Wisdom for the doctors, nurses, technicians, etc…. to figure this out for sure and come up with the proper plan of action.
2. Complete and total healing. Whether through God’s miraculous intervention or through the healing hands of the doctor doing surgery….beggars can’t be choosers. We will take it however we can get it.
3. Practical matters: caring for the kids during all of this, paying the bills if John ends up out of work for surgery, short-term disability, FMLA, how much sick time does he have left, etc, etc, etc…

As far as the children go: Alex is in Afghanistan and will find out what he needs to know when he needs to know it. Amanda and Amber are adults and we are including them on everything we know. Noah, Jeremiah, Elijah and Hannah are way too young to process this. We will be telling them in bits and pieces on an as need basis. For example, Monday they will be with my sister Cori all day, and they will know that Daddy has to have a better picture taken of his brain. If any of you have chance to talk with any of them about this, we wanted to make sure you know what we are telling them.

We are exhausted, a bit overwhelmed, but completely secure in the verse that closes every e-mail I send: He knows the plans He has for us and they are plans to prosper us and not to harm us… plans to give us hope and a future. Thank you in advance for your prayers.