Happy new year!

 Hi guys – I just wanted to give a quick update. This week I have continued to make progress.   All my  symptoms have been decreasing.   I still am easily tired, and my ears ring when there is too much noise for too long.  But I have not been light sensitive, I have been able to be active, I drove to do a few errands the last couple days, and I plan to go to church tomorrow.  It's amazing how exciting driving a car and breathing the fresh air is when you've been cooped up for six weeks! Lots to be thankful for.  Thankful for all of you and especially for the hope we have in Jesus.  Looking forward to a new year! -Casey

Gifts

Merry Christmas!!!  This is a very exciting Christmas for us. I have continued to do well and be able to be active, although I still have to lay down every so often to relieve head pain/pressure, stretch my neck (which has been really tight), and escape noise (lots of excited kids opening gifts!)
  We feel really really loved.  You guys have officially spoiled us. Your love, help, notes, prayers and gifts have been way above and beyond and have blown us away. Thank you!!!!!!  You remind us of another very generous Giver on this Christmas who gave His most precious Gift to each of us.  Not to mention all the other billions of great gifts He has given each day of our lives.  Gift after gift after gift, all undeserved, culminating in a super expensive gift – his own life. That's some serious generosity -- worth praising, celebrating, and feasting about!!  "Oh come let us adore him!"  Speaking of gifts, this West Nile scare has been a jolting reminder that life is short and each day we get with each other is a gift.  If you have lost a loved one this year I am praying for God to comfort you. May God help each of us treasure the gift of time we get with each other and treat each other like gifts.  Here's a song I wrote this week about that: https://www.dropbox.com/s/xeym8yq47n7ir6i/Gift.m4a?dl=0
I wrote it to my wonderful wife, one of the best gifts of my life,  Love to you all; and again, merry Christmas!!
 -Casey

Progress!

Really great news, guys: this week I have made real progress. I'm sleeping normal amounts of time. My stamina is growing and need for breaks is diminishing. I did not have any migraines, just lesser headaches. And the best news of all is that yesterday I had significant improvement in my light and sound sensitivity – I was able to spend the vast majority of the day in normal lighting with no ear plugs. My head felt more like it had a brain bruise rather than being in a loud rock concert, i.e. it hurt, especially if I made fast movements, but didn't feel like it was ringing/throbbing/overwhelmed.  I was able to help with a lot of things around the house, eat meals with the family, play Legos with the kids, and even roughhouse a bit with the kids.  

   This all of course is incredibly encouraging.  One of the scariest things about West Nile is that the things we read said that some of the symptoms may never leave. So you're wondering in the back of your mind, "what will we do if these symptoms continue?" What will happen to our family? To my ministry? On and on. Fear and worry. Same old enemies, new situation.

  Over the last five weeks my fears and worries have been helped by the cards that you have sent as well as by Bible passages.  A recent favorite is Exodus 15, which paints a picture of God that is mind-blowing. It makes you stand in awe of his power, the kind of power that can suspend waves in mid-air and take down the world's super power (see the previous chapter).  But my favorite verse of the chapter is verse 13 – "in your unfailing love you will lead the people you have redeemed. in your strength you will guide them to your holy dwelling." Seriously, talk about assurance. An all-powerful God with unfailing love and faithfulness!?  Awesome.  You would think they would feel invincible. You would guess that the people were never afraid or worried ever again.

    But you would be wrong. Verse 22 says that after three days in the desert they had lost faith. Just three days. Three days after seeing the waters part and their oppressors drowned. That encouraged me that I am not alone in my foolish fears and worries. But what encouraged me the most was the 21 verses before that that celebrated God's unstoppable strength and faithfulness and his commitment to care for his people no matter what.

   It made me think of this great song that you need to hear if you haven't already: https://m.youtube.com/watch?v=PCVLh4ASo6Q.  The song is right that there is never a reason to worry or fear since we have the passionate commitment of our Father in heaven.

    And here's another verse to the hymn "my Jesus I love Thee" that I wrote laying in my bed a few weeks ago:

Today it's still early but fear's taking hold 

the waves are so wild that I forgot who's in my boat

I have the Champion who always wins his fights

 so I have nothing to fear cause I have Jesus Christ 

I'm so excited about the progress, thanks to all of you for praying and caring,

Casey

home

  Friday's migraine brought back some of the night sweating, more minor twitching, and fatigue of before, so I spent Saturday in bed recovering and being careful.  Sunday I felt pretty good and I was pretty active, but I got another migraine last night.  Thankfully the medicine helped after a while, and I was able to sleep. The voice recognition software on my phone helps me give updates, because looking at screens has been difficult for me to do. I've only tried TV a few times in the past five weeks, and usually only for a short time before the pressure in my head grows almost to a burning sensation.  One of those times was with Lincoln - he sat on my lap and we were watching an updated cartoon version of The Wizard of Oz. I lasted long enough to see Dorothy's house get taken up in a tornado, but the new tech-savvy Dorothy called her mom mid-flight, and her mom phoned ahead to a friend in Oz.  So Dorothy had someone waiting to welcome her when she stepped out of her house!  Ha ha.  But both the new Dorothy and the old Dorothy had one thing right: there's no place like home.  
  Katie and I were sad to miss family Christmases in Illinois and Seattle this past weekend.  Family always means a lot, but especially during hard times.  We are so grateful for great families.  But more than my Illinois home, these last five weeks I have been thinking about my true home.  More than any other song, I have been singing a hymn called "We are going home."  I discovered it this summer in the red Gospel Hymns hymnal that I received from my home  Morton Apostolic Christian church in high school (even gold embossed with my name on it!).  I not only like to write my own songs - ever since I was 12 I have loved to sing hymns out of the hymnal – sometimes with the original melody and sometimes with a new one (Ps 33:3!).  I gave "We are going home" a new melody, and it has been such an encouragement to me to sing on my bed with my ukulele.  Here's a rough recording I took with my phone in case you would find it a blessing (and not creepy to listen in on my bedroom, ha ha): https://www.dropbox.com/s/6r9pnh4xlewyxml/We%20Are%20Going%20Home.m4a?dl=0

Grateful for you all! - Casey

one month

We just hit the one-month mark, and with that comes emotions that are all over the place.

Disappointment, & some frustration--  dreams of where Casey's healing would be by this point are not coming true.  We had dared to pray & hope for complete healing by now...or even for things to be at a much better spot.  And yet he continues to need to stay in bed most of the day, and he has to be so careful to not do too much physically or he pays dearly for it.  I get nervous when he's dared to go as far as to helping with dishes a few times, because I know that it will often send him straight to bed in exhaustion later.  Even having a conversation for more than just 5 minutes can be hard on him -- I am learning to try & watch his face and pick up on cues so that I don't have to keep his mind engaged for too long so he doesn't overdo it.  

Gratitude -- he is alive.  And we are deeply grateful.  His mind & ability to think is back (though slower) for weeks now.  He saw our town's lovely park of Christmas trees for the first time last week (it had been lit up for a month already) & was admiring its beauty....made me realize again that this poor man literally slept away almost a month of his life.  He has been catching up on what he's missed-- trying to soak it all in as he is able--- catching up on all of Lincoln's newest words & antics (most of them are raw & wild toddler madness!) --cuddling as he can with the kiddos to hear their latest endeavors & let them know they still have a dad who adores them.  He is slow & needs to be careful-- but he is here with us & we are grateful.

Most days this new stage has started to feel normal-- what a relief.  We are not struggling to remind the kids to be gentler with their dad, and our rearranged home now feels homey & normal to us.  Linc & Merian are even adjusted to sharing a room -- but the poor girl is trying out earplugs so she can ignore the baby babble he does sometimes as he falls asleep. :)  Poor Case is still working on whatever rhythm he can find-- but is continuing to learn to listen to his body as he also has enjoyed doing some little projects here & there.

And yet sometimes we are still in shock.  We joke that this is the worst conversation killer....sharing that mosquitoes in our local area have the potential to spread a disease like this one...the responses we receive are always that of shock.  Usually it's a horrified look on the kind friend or stranger-- with one or two follow-up questions...and then an almost mortified silence.  It's at that moment that we feel a renewed sense of shock ourselves.

Answers are still not quite here.  Blood has been sent to Mayo twice and both times he tested positive for West Nile, yet we just heard back today that he was negative for everything the state CDC tested, including being negative for West Nile.  Our doctor followed up by talking to the state epidemiologist who specializes in arboviral diseases, and she is now working on getting a blood sample sent to the national CDC headquarters for a different DNA-based test to do a final confirmation on the diagnosis.  The wait will be 3-4 weeks on those results.

So many of you are kindly asking how you can continue to help, and we thank you.  Case saves his little energy each day for a couple short visits with the kids & I each day--  he hasn't really done visitors yet.  But he does so very much appreciate all of the prayers, love & encouragement that has been sent his way-- THANK YOU.  The physical notes/cards are especially amazing (as his light-sensitive eyes don't have to look at a lit screen)-- and when he's awake he really has looked forward to reading the encouragement.  For those who have asked & we haven't seen in awhile-- here's our current address: 315 Oak St, Berlin, WI 54923.  

In the midst of the hard, God is gracious & good.  Case & I were just today counting all of the ways God has been so kind to us in the midst of allowing this to happen-- and we can't wait to share soon. 

We still don't have answers or a timeline,

but every day we wake up & press on.

We can struggle with feeling alone in the hard, 

but we get to have an amazing tribe that has rallied.

I want God to be here with me when things are good,

but I desperately know my need for God when things are hard.

We prayed God would use us to help the broken this Christmas,

and instead we get to understand what it is to be broken, 

to stand in it 

and experience

Immanuel

God is here.

bleak midwinter

  Today I had a pretty good morning but I crashed after lunch with a migraine and I spent the afternoon and evening in the dark. It's been a challenge to figure my body out and balance things properly. I have to agree with Emmett who told me that he would like to lock the West Nile virus in a box and lock that box in a box, in a box, in a box, in a box, and tie them in ropes in a dungeon guarded with lasers. :-)

   A few days ago I was reading a time magazine article about Fidel Castro.  In 1979, when communism had stalled in Cuba and the country was obviously struggling, a reporter tried a roundabout way to get Castro to admit failure. He asked Castro the question, "Why has communism failed in Russia?"  But Castro wouldn't have it. He pounded the table with his fist and said why aren't you asking, "Why hasn't communism failed in Cuba?!"  Castro refused to see just how broken Cuba was.

   I'm not sure how the world looks to you these days, but from my vantage point it's pretty easy to see that the world is broken.  I've gotten a tiny spoonful of the suffering that millions experience worse than me.  For all of our sakes, more than ever before, I long for this broken world to be fixed.  Here are some lyrics that I wrote a couple weeks ago that could be sung with the familiar Christmas carol:

In the bleak midwinter it's not as it should be
Sin has corrupted it completely
You came down to make things right
But we killed the Holy One
Now it's bleak midwinter and we know we need the Son

In the bleak midwinter, with the Bridegroom gone
We weep and fast and pray for the Kingdom Feast to come
Our lamps ready and burning for the wedding day
When after bleak midwinter the Bride will see Your face

In the bleak midwinter, it feels cold and gray
It feels like forever since you went away
How long Lord til you come again?
How long til you return?
In the bleak midwinter our Advent fires burn
Jesus our Messiah, Jesus Christ our hope
O come quickly, come, Lord Jesus take us home
We long to hear the trumpet call
to be with you always
In the bleak midwinter, we want Heaven's Rays
In the bleak midwinter how can we go on?
Have we now been orphaned to survive on our own?
No, though not face to face we exper'ence You in part
Sweet foretaste of Heaven – Your Spirit in our hearts

  There is nothing more encouraging to me than the One who loves us more than a groom loves his bride, who proved that by dying for us on a cross, who is with us now by his Spirit, and who will fix this broken world once and for all when he returns. Jesus is everything. God save us from pounding our fists and refusing to see our brokenness without him.

wolverine

I mentioned wanting to start sharing some of the things that I have been learning, and so here is the first: I am wimpier than I thought I was. Now, by that I am not referring to the fact that I wept like a baby for an hour or two in the hospital.  The poor CT scan intern. They kept asking how they could make me comfortable and I kept telling them I had no pain and that I didn't know why I was weeping  No, I am not referring to that, because my doctor tells me that he has seen many big burly football dudes do the same thing when their brain gets compressed (in their case, by a concussion). 

No, I am referring to something far deeper and more fundamental. I don't think I ever consciously thought about how I would respond to pain, but I think my male arrogance subconsciously assumed that I would endure it like Wolverine - gritting my teeth no matter how many bullets went through me and continuing to fight on. OK maybe not physically, but at least spiritually - I'm a pastor, right?  Shouldn't I be enjoying God's presence and singing songs of praise to God through the pain like those stories of the martyrs? But the truth is, when the migraines would not leave, I wanted to tap out. It was hard to focus on anything except the pain, and if I could pray it was very short prayers for help, healing, or for Jesus to come back.  Perhaps I had subconsciously imagined that I would face the end like Frodo did – the great victor, boldly sailing his ship into the afterlife. 

But I think a different story from Frodo's life would be more fitting – the time where he was stabbed by the Nazgul, started going unconscious, and was carried to the elves for healing.  That latter Frodo story is not about Frodo's strength, but his weakness. It's not about victory, it's about Grace.  And Grace is what I so desperately needed, both physically and spiritually.  This is the kind of wimpiness I am talking about – not being a wuss or a crybaby, but the fundamental weakness each of us have as human beings.  As much as our human arrogance doesn't want to think about it, we each are incredibly finite, limited, weak, and even sinful.  Perhaps the story we should remember is not Frodo's, but the one Jesus told in Luke 18 about a Pharisee who was "confident in his own righteousness" versus a tax collector who humbly prayed "God, have mercy on me, a sinner" and so actually received God's forgiveness.  

I shouldn't have been surprised, but this ordeal has again reminded me that the way we start the race is also the way we end the race – by humbly relying on his grace.  We can not "wolverine" our way into heaven, we'll only get there by asking Jesus to forgive us & carry us there by grace.  Thank you to all of you who have helped carry me to the throne of grace this last month, especially Katie, who has been such an incredible blessing to me in so many ways. 

Love you all, 

Casey

update from Casey

Hi guys- 

I am starting to feel better so I thought I would write the update this time. It's been a rough month!  The worst of it was that first week, when I was wrestling with bad migraines and bad nausea.  Then I went into hibernation and was sleeping a ton. I still sleep more than normal, going to bed early and getting up late, but my abilities during the day have far improved. It seems that each day I have more stamina and less symptoms.  My head continues to feel pressure on it, and that increases with light/sound/activity, but I have been finding workable rhythms: Time in bed, time out of bed, time with screens, time with eyes closed, time with kids (with earplugs in), time alone. It seems to be working pretty well, which encourages me.

Overall I have been doing well emotionally/spiritually. When the pain was great, it seems that all I could do was pray for relief. But when it started to let up, I was able to quietly sing and play my ukulele in the dark, which really helped me focus on God and his love and his promises. There were plenty of negative emotions and thoughts to work through, but God really really encouraged me as he always does. In the days ahead I will try to share some of the specific lessons/songs from that time. I also needed your encouragement –there were many different times when things felt particularly bleak that I would receive a note or a visitor that would encourage me deeply. Thank you to all of you! And thanks most of all for helping my wife and kids through this month. They were dealing with sadness, fear, extra work/stress, and you all rallied around them amazingly.  I feel really really loved and spoiled.  

Love to all of you, 

Casey

adoption

This might be as good a time as any to do an update on our family's adoption, especially since I'm getting questions now that Casey has been ill.  For those who haven't heard, our family has been in the adoption process since 2013.  Case & I have had the passion for orphans and interest in adoption since our early years of marriage, and in 2012 felt like it was time to move forward.  We started raising funds at that time with garage sales, selling Casey's first CD, and finding out what agency & praying for a country.  We prayed for direction -- and chose Ethiopia and moved ahead.

2013 & 2014 were years of so very many delays with our the entire adoption process.  We had difficulties with a social worker (a new policy in that particular agency made it difficult for us to adopt) --- and then a surprise pregnancy at the beginning of 2014.  We were in between agencies at that time, and I found it difficult to get anyone willing to take on a pregnant woman.  As many of you who have adopted know, everything is time-sensitive & we could lose so much of our investment if we stopped & started again-- so I kept making calls until we found an agency willing to let a pregnant woman move forward with adoption.  At the time we didn't think it was much of a risk, because we knew that the wait for a child from Ethiopia was still a good 2-3 years out.

Our surprise baby L was born in July of 2014.  Up until then I was getting amazing questions-- as our confused kiddos would share the info.  The best was my daughters 4K teacher laughing that Merian was telling them that a baby from Africa was growing in her mom's belly.  :)  We also finished up the dossier & started the wait for a child that fall (Casey was the beast who finished that up!)  And then we just sat & waited.  Oh, and we chose to specify a girl-- that was decided the moment our only daughter bawled at the birth of her third brother.  Out of that deal M got to start ballet that fall AND if we were going to adopt it was going to be a sister.  (And honestly, wild little boys are a challenge, and this tired momma is ready for some more females in the house!)

In February of 2016 we were told that the wait for Ethiopia was started to be so long that it was now a good 4-5 years with another 1/2 month added for every month that passes.  Basically--- it could possibly be forever.  At the same time we were offered the option to switch countries at a discount -- (aka. we would not have to start over financially from the beginning!)-- so we prayed about it & chose to switch.  I had no idea how I would feel about that--- but I honestly struggled.  I had grown to love Ethiopia, this country I have never visited-- and was excited to adopt a little girl from there.  China felt so distant to me, and my heart wasn't in it yet.  But we made the change-- and I prayed God would help our hearts grow to love this country our future daughter was from, just like we had Ethiopia.

Since then we've completed our home study update-- and there have been a lot of delays out of our hands again-- but by January we are hoping to finally have our dossier in the mail over to China.  And then we will be able to wait for a match for a daughter.  YAY!

Okay, and now for the question people ask us these days-- Does Casey's new illness affect the adoption?  Of course it does, but not immediately.  Currently we don't have a firm diagnosis.  And if this is West Nile, no doctor can predict ahead of time what it will look like.  Currently we don't know if this is going to clear up in a couple weeks or take years to heal from.  We just have so many unknowns right now that it seems crazy to suddenly stop something that God has put on hearts for years.  We are committed to making choices that are good for everyone, and we will make those as we need to along the way.

So for now, we keep sending in our very time-sensitive paperwork & pray and wait on God.  Trusting that He has put this on our hearts for a reason, and for now we will just continue with what He has for us.

Quick update

It's not a ton of news, but it's something to update y'all on. 

Casey had some new labs done yesterday, and many of the results just came in as the doctor called this evening.  Also, we have an amazing doctor-- and tonight we were again grateful that he went out of his way after hours to call & update us with the new information right as it came in.  Everything was negative so far--- his second tick panel came back negative & an antigen for another possible illness was negative.  And his blood panel was all in the normal range.  Yay!  The last test that hasn't come in yet is the West Nile antigen -- so we are waiting to hear back on that to confirm his diagnosis.  We also still have another week or two until the state lab finishes their testing as well.

After resting a lot yesterday as he struggled with a migraine again, Case had a much better day today. He paced himself with activity-- came out & talked to the kiddos for a couple of minutes while he made his oatmeal, and then took it with him back to his bedroom.  He spent a lot of time laying in bed composing today & resting, and then was able to spend some time with family tonight for awhile as the kids all had fun decorating the Christmas tree.  Tonight we finished up the Christmas decorating-- we owe a HUGE thanks to my Aunt Sharon for that.  Between today & last week she made it all possible by helping wich so much around the house & by even helping get the decor outside going -- we are grateful!

We are starting to settle in for our new season, however long this may be.  The healing process has been very slow, but it is happening.  And for that we are so grateful.  We have concentrated a lot on the kids & just helping life start to get in a more normal rhythm again, and the kids continue to do better as they adjust to this new normal.  They each take turns as they get home from school to run in & spend some time with their dad.  Henry loves to bring all of his drawings & latest Lego creations in & talk over the day with Case.  Merian loves to crawl onto the bed & cuddle into her daddy, and tonight she wrote another song with him -- I think it's one of the sweetest things they do together.  Emmett seems to need Case more than any of them, and loves to pop in the most often--- and is always trying to see if he can get his dad to wrestle even the littlest bit with him.  Lincoln is all toddler-- he loves to be loud & hop on the bed when he visits his daddy.

So here we are, and life is going okay.  Not perfect, it definitely is often hard-- but it is good & we are grateful.  Every Christmas tradition is so much more meaningful this year, because we are still so fresh from being jolted from our normal.  And so we celebrate each little milestone, because they are each so very big.  Casey hasn't forgotten a word, stuttered in an attempt to remember it, & still not been able to think of it (kinda like a stroke patient)--- since last Saturday-- so we are excited about that!  He's learning to try and stay ahead of his extreme fatigue & listen to his body more--- and as he does that he is able to pace himself & spend a bit more time with family.  He can handle 15-20 minutes out of his room with family a couple times a day, compared to 5-10 minutes at a time last week.  The kids are so excited when they get to be with him-- he's definitely a very popular person in our home!

To be alive and do this Christmas season together this year, this is suddenly an amazing gift.

 

this week

Wow, I did not meant to get so behind on an update....

Casey continues to improve each day, but it is also very slow.  Typically he'll be up out of bed a few times a day for about 5-15 minutes, depending on how crazy the environment is.  When the kids are around, he can usually only handle being out with all of them for just bits of time-- and then he'll need to go back to bed.  In those moments he'll often hold his head & says that it feels like his head is throbbing, feeling like he's been at a crazy-loud rock concert for hours.  He's learning to listen to his body better and anticipate his limitations better, so that he can lay back down before anything gets too intense.  In the past week Case feels like he's overall just getting back more energy & is feeling better.  Though he must stay in the dark most of the day, when he's feeling well he continues to enjoy playing his uke & composing music.  It has been such a gift to help him pass the time & focus on God & worship.  Today he shared that it can be lonely, too-- sleeping & resting one's life away & not being able to spend much time with his family is hard.  

We were absolutely elated to get little L back yesterday!  He had a blast staying with family in Illinois, & they were so very good to him.  By the end we had kids crying up here from missing him, L was crying, and this momma was shedding tears as well...and Case was sadly composing a lullaby for him.  I drove down on Tuesday, and they were so kind to meet me.  It feels wonderful to have the family back together again.  Though L brings his own little version of crazy toddler madness to the mix, we couldn't be more happy to have him back here with us. 

This week I've hit a bit of a wall emotionally & physically--- too many almost-sleepless weeks were hitting me fairly hard.  It was feeling like an illness was coming on, and I realized that I could NOT be down for the count yet--- so I've dropped everything and worked more on trying to sleep more.  It's been good, and much needed. And yes, this is late as I write this....I'm going to bed very soon. :)

Please know that we truly do appreciate all of the ways you have reached out, called, & offered to visit.  For now, Casey has not been doing visitors-- just because the noise & conversation drains him & he tries to save his energy for the day so he can get some time in with the kids when they come from school.  All of the kind words of encouragement you have sent via letters & emails have been amazing--- Casey loves reading them when he's feeling well.  Thank you so much for the amazing ways you have loved on him! 

You make me feel like dancing

Quick update for today-- Casey is continuing to find relief from staying in bed laying flat.  The dizziness & hallucinations were there all day.  He said it's kinda like taking all the memories he's had in his life up until now, tossing it all in a blender, and then seeing the weird mix of memories that come back out--- but they all get shot at him at lightning speed.  So odd-- and not fun.  Strumming the uke helps him be able to focus, and yet keep his eyes closed & resting.  We are now two days out from migraines, so for that we are very grateful!  And just patiently waiting for healing while he rests & passes the time.  He keeps eating well & overall feels like there is improvement.  Just little teeny bits of improving each day.
-----------------------------------
Last Saturday a sweet friend called & asked if she could hold a prayer vigil outside our home that night.  I was grateful & agreed-- but then immediately forgot about it.

That eve I came through the living room where my 2 y.o. was fiercely breaking it down to his Go Fish music.  I did a quick move with him for a second but then walked through to the kitchen to work on Casey's dinner tray.  Within seconds L had chased me down & was begging me, "Dance ah-me!  Dance ah-me!"

Suddenly I realized I couldn't remember the last time I had let it go and had fun with the kids.  The hour before I had received the latest news on the West Nile positive test and had a few tears.  And this sweet boy needed his fun momma back.

I set down the food & took his tiny hand.  As we ran I realized exercise had not happened in over a week...so I resolved myself to dance hard.  It was an amazing, sweaty 5 minutes of letting it all go.  I got creative & made up my own move (first time since the age of 4) --- it involved skiing moves (from the girl that can't ski) & pumping arms.  And maybe some head banging (that's not a thing any more, is it?!)  Other than the insecure moment I felt for a second at the beginning-- wondering if there could be people walking by my house that would look in my living room window -- Stop it, this is your insecure teenage self talking to you.  Just dance, girl!  

As the song ended & I caught my breath, I looked out the window quickly--- and was mortified to see a face.  I swung back to take a closer look...I know those 2 faces!!  And it looks like there are more....I slowly went into the next room to get a better look. (Slow movements so they wouldn't see me...ha.)  Oy, there were a lot of people standing right outside the front of my house in the dark--- heads down & praying.  I still have no idea how many, it was a blur -- 10, 20? Who knows.  SO sweet.  SO amazing.  Amazing friends from our church banding together to pray & ask for my husband's healing.  Aigh, but why did I have to forget?  This was the first dance party this fall/winter--- and I just had to choose this night.

I resisted the urge to army crawl back across the living room...and instead sprinted across out of view.  My only hope was that everyone in that group had their head down in true, fervent prayer....eyes tightly closed. No matter that Linc had turned up the bass a bit & they could probably hear it over their prayers.

Case couldn't stop laughing when I told him.  Every time I checked on him he would ask me to show him yet another move that I had done for the crowd....and he would lose it as he rolled around in bed laughing.  I told him I was glad I could make his night better -- since up until then life had been fairly miserable...it made it worth the sacrifice.

Every pastor's wife accidentally dances in front of a prayer vigil sometime, right? :)

Getzmosis

Things we've learned so far this week ---

Casey needs to take things very, very slowly.  On Tuesday he was feeling really great & decided to do a couple of visitors, go upstairs to play legos with the kiddos, do a couple meals with us, and just try to be with family more.  It truly wasn't "a lot" compared to normal standards, but it was too much for him.  That night the encephalitis symptoms flared up worse with hot flashes & muscle spasms as part of it---and he woke up the following morning with another crippling migraine.  Wednesday we spent the morning trying to get the pain under control, and by mid-afternoon he was comfortable again & able to rest.  After spending the entire day in bed & in silence & darkness he was doing better today.  

Later this afternoon he had a doctor appointment.  A diagnosis remains inconclusive, but the two previously considered tick-borne illnesses (anaplasmosis & ehrlichiosis) have now been ruled out.  West Nile Virus remains an option, and our doctor continues to think Casey's illness presents similar to that disease.  An infectious disease specialist remains in the conversation as well, & agrees to continue with the same course of action.  The state lab has Casey's blood samples & they should have results back to us within a couple weeks as to whether he has a newer illness than what was previously tested.  We all joked together about the off possibility of Casey being able to have a new illness named after him--- I'm voting for getziosis & Case likes getzmosis.  

The extreme fatigue continues, and Case is now he's starting to anticipate his limitations a bit more, pacing himself & being willing to receive more help.  He even chose to ride a wheelchair into the clinic, just because the dizziness was making any distance difficult.  His mind continues to struggle some as he is forgetful, indecisive & confused in various moments-- but yet overall he is improving.  He has enjoyed laying in the dark with his uke, and when he's feeling better he tinkers on it & is composing music again.  We are hopeful, praying that with rest he will continue to gain back his strength.

In the meantime -- life is still buzzing at home.  My aunt was over today & helped our house start exploding into Christmas.  The kids came home all excited & put up their little trees in their rooms.  Tonight we sat around the table & started our nightly advent readings & candle lighting -- Henry says that every year this is his favorite part of Christmastime.  Teachers at school are so very supportive, being patient with my littles as they sometimes struggle.  Linc is living it up with his cousins-- we miss him dearly but the break is needed for this healing stage.

Casey & I both have struggled different times with fear & frustration at this situation.  After that first week & a half I was a mess--- too many trips to the ER, struggling to care for Case at home, love the kids in the moments I had with them, coordinate help (& there was such great help!), all the while feeling like I was holding in my tears as much as I could--- I felt like I was going to explode from it all.  Thankfully Vivian was already planning to help watch the kiddos that night, so I sprinted off on a jog for the first time in a couple of weeks.  I was feeling so depleted that I needed some reminders of truth, & the sermon I happened to listen to was about angry prayers.  Elijah the prophet had just been a part of one of the most miraculous displays of God's power -- and now was having to run for his life as a wicked queen was out to kill him.  (1 Kings 19)  The poor man was exhausted & depressed, and he belted out his honest frustration to God.  Yet God was so kind by responding with a cake angel (read it, it's true!) & showing Himself to Elijah.  I was trying to muscle through it as I listened--- but by the time I got home I was a sobbing mess-- so I sprinted back to sit by the river.  I poured it all out to God -- Why Casey, why now?  What is our future going to look like, especially if this doesn't go away?   How can I trust you when you allow this?!  After I had yelled & sobbed it all out, in my exhaustion I was overcome by this complete peace.  This thought filled my mind-- God is all I have, and He is hurting with me.  This world can be so painful-- but God is still there to love me & He is weeping with me.  I just needed to get it all out & be honest with God -- so I could stop sitting in the corner crossing my arms--- and crawl back into His lap to be held & loved.  I don't need to know all of the answers to those questions yet -- and maybe some I will never know.

All I needed to know was this:  I am not alone.  God knows what is happening & He continues to hold Casey & our family -& hurt for us as we go through this.  And that is enough for this moment.

The list of things to be thankful for is so long.  Casey is alive, and he got through an acute stage of a scary, sometimes life-threatening illness.  All of my previous annoyances with my hubs are now these precious little reminders of him being alive-- even the loud belching. :)  God keeps sending His people at the exact moments that we are most broken.  Sometimes the thought has barely gone through my head and God has already answered my need.  And we are somehow pushing through with strength & more peace than I ever could have imagined.  It's a strength I know isn't mine, and it doesn't make sense.  I know it's because of the prayers of all of you -- and I am so grateful for it. 

Questions remain unanswered.  But God is here & we are loved.  That is enough.

the back story

Because I don't want to forget what happens-- and if nothing else I want my kiddos to be able to come back & read this story.  In some ways it's nothing special, and many of you have harder journeys.  But this is just our story.  I am going to try to cloak it in words for myself & my kids to read in the future.  So our little family can be reminded when life happened-- when it came and hit us hard--and how God worked in the middle of it.

This season when we have more questions than answers.  

This season when our littles find it a treat to even see &; spend a couple minutes with their Daddy in a day.  

This season when panic can come quickly, and I see my hands start to shake again.  Quick breath prayers-- where I reach out to Jesus & remember His truth-- has been getting me through.

This surreal time when some moments are just so ugly & broken--- and yet God breaks through with grace & comfort.

This season when every little meaningful moment with Casey is now weighted with so much gratitude & joy.

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I keep wrestling through how much to share on here.  There are so many oddities about all of it-- and since Case has never even stayed overnight in the hospital during any of it (though he was offered that a couple times) --- it really can  make this all confusing to explain.

Casey got sick 2 weeks ago with high fevers & a migraine.  It kept him in bed for 2 days straight, so we went in & he got sent to the ER.  Bizarre labwork, a previous fall off a ladder (shocking new info to this wife), & scary symptoms-- (the neurological ones being the worst)-- had them all concerned & running many tests & scans.  That first week involved 3 trips to the ER & so very much pain & nausea for Case.

The medical professionals were all so good, and I just want to stop quickly to say that we both have felt so very grateful for the amazing care he has received.  Help with pain & nausea control, antibiotics started right away, and just amazing care every step along the way.  You know who you are and we are grateful for you!

At the 2-week mark we still don't have any definite answers, but after many tests we are told that he very likely has either a tick-borne illness or a mosquito-borne illness.  There are many possibilities within both of those, and an initial test for West Nile Virus (mosquito-borne) did come back positive-- so we are waiting to hear more on that.  The Wisconsin CDC is grabbing a sample of his blood as well, to study & see if this might be a more rare type of illness than has been tested for already.

Most of what he went through just hasn't seemed right as fb status updates, so here's a bit more of an in-depth look at what it's been like these past two weeks....

There were moments when Case was almost out of his mind.  This encephalitis (inflammation of his brain) has the doctors concerned, because it has been bad enough he's had some moments of confusion, hallucinating, & some uncontrollable & unexplained weeping (This is from a man who never cries.  The one exception is the lone tear that escapes when his little princess talks him into cuddling & watching a girly Barbie movie.  But that just means he's a great dad. :))  We both did laugh as the worst of this happened in the hospital--- and the poor guy struggled through sobs to explain to medical staff that he truly wasn't in any extra horrid pain or feeling emotional-- it just came on suddenly & was out of his control.  I would hug him & hold him as he had inconsolable, gut-wrenching, moaning sobs--- helpless to do anything but pray & wait.

The pain & nausea of that first week were so bad he would sometimes writhe in bed.  The few ER trips we did helped to keep him hydrated.  As we worked on pain control there wasn't much else to do for him (that he would accept)-- but he was always grateful for a cool cloth & any whispered Bible passage.

There continue to be more odd symptoms than I will even share on here, but we have a lot of things we are celebrating as we wait & hope for answers & healing.  Since Thanksgiving we have seen Casey really start to do better-- he is eating, the migraines are lessening, and with that he is starting to feel like he is getting his mind back.  As of Monday, he started to get up & hang out with us a few times a day for short moments-- and has even done a couple of meals with the family.  He still sleeps away most of the day with an extreme fatigue. The confusion can be there in tiny bouts at various times (he doesn't always know it's happening)-- so we make sure to have someone in the house at all times.  His intense sensitivity to light & sound continue but are now sporadic--he's so adorable laying in bed with ear plugs & my satin eye mask. :)  I celebrate these new developments from the past couple days....things that used to be normal but are now so huge for us:

* Every morning Case gets out of bed & makes his own oatmeal (& goes right back to bed-- but getting up at all is huge!)  He does 2-3 meals with us a day-- it's amazing.
* The migraines have lessened to the point that he can read again.
* He is up more often & enjoys tinkering on his uke while laying in bed....composing again has soothed him & encouraged his heart.
* He can talk & interact with all of us more, and even has accepted a couple of visitors. One a day on average, but it's a start.

And I celebrate all of you. We are a normal family here, and Case is just one of many who have had the unfortunate opportunity to contract a bite from some type of infected bug.  But my goodness, you all know how to love on us so very well.  The meals, the calls & texts, the prayer, the childcare, wrapping birthday gifts for my little guy's birthday in the middle of this, sitting with Casey....all of it.  Thank you to the many that have been so compassionate to us.  We are not deserving of all of this love, and I am so grateful for you all.  I am taking notes & learning how to better push in to those in my life in the future--- I want to keep learning how to love well, just like you guys do.

One last thing-- many of you keep asking how you can help more. I keep reaching out as I need to to our close friends & family for help with my kiddos & whatever else comes up.  If we end up needing more help-- and we might if this healing stage takes a long time -- I will be sure to help get more things organized & let ya know.
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I keep thinking how right now God and His Word -- it's either all true for us or it's completely not.  And honestly, Case & I keep finding that there is nowhere else to turn, God is all we have.  And He has been so very gentle in meeting our needs-- I can't wait to share these specific stories on here soon.  These moments are my little nuggets of gold in the midst of this mud, and I can't wait to wrap them up with words so I can remember them & be encouraged in the future.  We don't have many answers with Casey or a guarantee of healing-- but for now, I am finding this life verse to be truer in my life than ever before:

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts & your minds in Christ Jesus. (Phillipians 4:6-7)