Adoption- the news that's hard to share

     

     Many of you knew this was coming, some of you might find this to be a surprise.  Casey & I have pursued this passion for so long that it's hard to type these words or know the best place to start.  We've met so many of you along the way that maybe we will just start this story at the very beginning-- 14 years ago when we first got married.

     Early on we had dreams of possibly doing missions & working in orphanages-- we knew we shared a genuine brokenness for orphans & a heart to love them.  To celebrate our 1-year anniversary, we were surprised with a pregnancy -- and started praying about adoption as a possibility in the future.  Years later after we had three kids, we chose to take a break from building our biological family & look into adoption.  We started saving & fundraising in 2012 & in early 2013 joined the Ethiopia program of America World Adoption Agency. As we were on the classic adoption paperwork trail, our local home study agency had recently implemented a new policy that made them have to let us go in early 2014.  At this time we also had a surprise pregnancy, so it was difficult to find an agency that would pick up a family that was already expecting a child.  We enlisted the help of the agency Special Children near Milwaukee, and were able to submit our completed dossier to Ethiopia that year, not long after Lincoln was born.  Soon after, Ethiopian adoptions started moving terribly slow until they ground to a halt by the end of 2015. America World gave us a discount to switch to the China program, and so we embarked on putting together a new dossier in 2016- hoping to adopt a baby or toddler girl with special needs. (Ethiopia as a country has since put a ban on foreign adoptions.) 

    Just before we got our dossier out to China, Casey got really sick in late 2016. It took doctors until late 2017 to figure out what was going on with him – leaking cerebrospinal fluid. We renewed our USCIS form hoping that the doctors could fix Casey through surgery, and since then have been waiting for a match with a child. This month Casey had his 12-wk post-op appointment, & we got the news from Mayo that they have done all they can do for his neck leak, as it is caused by a birth defect that will put him at high risk for the rest of his life. Since Casey continues to have symptoms and needs to lay down a lot, we cannot currently move forward with a special needs adoption. We have prayed during these past 1.5 years as we wrestled through this, trying to take the necessary steps to keep our dossier updated & be ready to move forward if Casey could heal. Our agencies have been patient, but we are nearing the deadline our agency has given us on making a final decision.  It is just not financially viable to keep an adoption on hold forever, since all of the necessary updates are also quite expensive.

   So with tears we have laid down our six-year quest to bring a little girl into our home. So  many of you have donated to our adoption that we feel the need to update you on how the finances shook out. Thankfully, we were able to raise & earn enough to cover the adoption expenses up to this point.  We are not in debt, but everything that has been donated & earned has gotten us this far in our adoption.

    We are trusting the Lord as we move forward into this new season and reminding ourselves that nothing is wasted that is done for Him in faith. Thank you to so many of you who have cheered us on with every step.  You believed in us, you encouraged us, you helped us raise funds, you donated, you cried with us as we hit so many hurdles, & you loved on us-- you helped us keep going.  Thank you from the bottom of our hearts. 

   It's funny how God works things out in ways we can't predict, and we know He will continue to show us His purpose for this chapter in our lives.  One of our top girl names as we prayed over a future adopted daughter was the name Vivian - which means "alive".  In God’s grace and providence, a young Chinese student named Vivian from Ripon College came to faith in Christ while attending our church and we were able to host her in our home in 2016-2017 before she went off to seminary. She is now very much part of our family. So even as God was closing one door he was opening another, and we give him thanks! 

back home

Today my neurosurgeon helped us understand that when he operated on me three months ago it was the first time that he had seen a dura that was imperceptibly weeping CSF fluid over a wide area. He gave it his best shot and packed it full of foam and glue, but didn't know if it would work. As Katie reported, the good news is that yesterday's MRI showed that my brain is sitting higher in my skull than before (and not causing venous congestion, bending of the optic nerve, etc, like it was before the surgery), so apparently the surgery worked well enough to stop at least some of the leaking CSF.  However, the fact that I continue to have some symptoms means that I am probably either continuing to leak some from that same site or possibly I have permanent damage from the 1.5 year brain sag.  The bad news that we learned today is that they really can't do anything about either of those.  He made it clear that my dura is such a thin and tenuous membrane that it doesn't make sense to open up those three inches behind my neck ever again; it would definitely just make things worse. Since they think it is most likely that all of my dura is thin, I may be more susceptible to leaks for the rest of my life.  So they told me that I can't do jarring or straining activity like running, jumping, or powerlifting.  But apparently quite a few people (although still a tiny percentage of the population) have thin spinal cord membranes, and many of them don't develop leaks.  So the docs are hopeful that if I am careful and I live within my new limits I can live an enjoyable life.  And that has been my experience the last year or so.  The nortriptyline medicine really helps keep the dizziness at bay.  If I plan my meetings to be staggered, I can lay down in between and still be productive on my phone while I stretch my neck and my head equilibrates.  When I push myself too hard I sometimes get a headache, but medicine usually can help it be manageable.  As Katie mentioned, I have still been able to attend many of my kids' activities.  In other words, my condition isn't horrible or painful, it just can be annoying because it requires a lot of life adjustments.  And it sounds like those adjustments will most likely need to be life long.  So, even though we were sad to learn there was no magic bullet, we are happy to be able to get real answers from really experienced guys and be able to start to accept our lot in life with its new boundaries.  And God has been giving us joy and blessings in this place just as he has in past places. Mayo may have run out of fixes for me but God hasn't run out of faithfulness to me.  This whole ordeal has brought more maturity and love to our home in a number of ways, and it continues to force all of us to rely on God more.  All of this makes me think of Psalm 16 - "LORD, you have assigned me my lot; The boundary lines have fallen for me in pleasant places; Surely I have a delightful inheritance. ...Therefore my heart is glad and my tongue rejoices ...You have made known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand." (Ps 16:5-11, abridged)   You all blow me away with your care and prayers. Especially cause laying down a lot isn't nearly as bad as some of things many of you are going through, and yet you continue to shine and persevere and show compassion to me and others.  God is so gracious and awesome to help carry us through everything we all face.  Love you all, Casey

thankful

Today Case reported in for his MRI-- it was only when he got there that he found out it would be just of his brain, with & without contrast.  Then I got him back to our little apartment to rest-- it's so great to be staying just blocks from Mayo, so he can lay back down in bed as he needs to.  

After lunch we went to the neurology floor to meet with our primary neurologist.  He was happy to report that the MRI showed that the procedure had accomplished it's main goal.  The brain sag & congestion that had been noted in his last MRI (Oct. 2017) was completely gone on today's image-- and it appears there is no notable sign of decreased spinal pressure per the MRI.  This is amazing news!!  (A simple definition if this has sounded confusing-- A brain sag can happen when there is not enough spinal fluid to keep the brain as buoyant as it should be.  The brain can get too low & put pressure on important things...like the brain stem, optic nerve, etc.)  So again-- no brain sag is a great report! 

Next was the issue of why in the world Casey has been experiencing such increasing neurological symptoms in the past month.  The neurologist did not have a definitive answer for this yet. It could be one of many reasons....1) as the brain heals it still has lingering symptoms that might resolve on their own, 2) he could have another possible leak that is starting & just not showing up on the MRI yet,  3) there could be lasting damage to the brain that is causing his headaches, or 4) he could just be struggling with headaches & neurologic symptoms for a different reason.  So basically, it's too early to tell-- but he is hopeful that Case might have healing over time.

The doctor is waiting  on making a definite plan until Casey has his appointments with the other 2 neurosurgeons tomorrow, because he is curious to see what their take is on Casey.  He also did take Casey off a bunch of his medications-- he even gets to try slowly working his way off his anti-seizure med. 

Casey's entire dura is thin-- not just at the one spot the surgeon saw-- this was a huge question answered today.  Thankfully, our neurologist said Case is not the first patient he's seen or had with this complication.  He thinks it most likely a congenital defect that he has had since birth.  There is also the possibility that it could be a genetic disorder.  For Case, he will always be more susceptible to spinal leaks, so he will have to be careful with activities for the rest of his life.  

Everything I just shared with you all is pure gold to us-- these have all been burning questions since the surgery in February. We weren't sure we would get any answers today-- so every bit of this deserves celebrating with full & grateful hearts.  Tonight we were treated to bbq & got to connect with some dear family that happened to be spending a night in town-- so much fun!  And now we lay here & rest, ready for whatever tomorrow brings.

I will give thanks to you, Lord, with all my heart. I will tell of all of your wonderful deeds. Psalm 9:1

Update

Nothing like waiting almost a year & a half to update on here!  Things got crazy & facebook seemed like an easier way to give a few quick updates here & there.  And honestly, ever since Casey's surgery this past February the outpouring has been so HUGE from everyone.  I promised myself I would do a few things....1. Personally write a thank you to each & every one of you who sacrificed so much for to generously provide food, financial help, or other amazing things.  2. Once I finally did that, I would finally pick up the blog.  I'm approximately 25-30% of the way through those cards, tho.  Mostly because this life since Feb has been so very full.  If I never get to write a personal thank you to you, please know that we are beyond grateful.  You carried Casey & our family through a difficult & painful surgery, we are beyond humbled & so very grateful.

Now it's time for an update.  Maybe I should back up even more, just in case a few of you didn't catch details on fb.  Case was blessed to get the most experienced neurosurgeon at Mayo Clinic working on him, & his team went in to try to repair a cervical spinal leak back in mid-February 2018.  The goal was to find the tear in the dura (sheath around the spinal cord that keeps in all of the spinal fluid) & sew it up.  Instead they opened him up & found that the entire dura they saw (3") was completely abnormal.  A normal dura is thick (he compared it to cardstock) & tough, and white in color.  Casey's dura is clear & as thin as Saran Wrap-- and it appeared to be leaking not at any one location, but just a generalized weeping along the entire 3 inches they were looking at.  The best they could do was to fill it with foam & glue-- & then close everything up & hope it would heal.

Healing has been hard-- a back surgery like that is painful & the muscles hurt pretty bad during the healing.  Casey also had the positive pressure effect of a spinal fluid leak trying to repair itself---the brain that had compensated for the leak now found itself with too much pressure & it had to work to balance out.  After awhile things improved for him, probably at about the 6-wk mark.  In the last month now, we are about 12 weeks out, we have come to find that Casey is getting the same spinal leak symptoms as before.

In fact, after he did a long morning last Sunday of teaching a class & preaching, he was in a pretty bad state.  We ended up getting a last-minute appointment Monday morning with his Mayo dr (this happening at the last second was nothing short of amazing!), and he said he thinks it looks like the spinal leak is probably back.  Thankfully, the fever that ended up spiking did not concern him.  He said the MRI scheduled for this week will help them know more, but he also said they might be at the end of what they can do for him at Mayo Clinic.

We came home grateful, but it's been not fun to think for us to consider Casey's current disability as a permanent thing. This info was so helpful, though-- allowing us to take time to process what things we want to ask if this is our last visit in awhile.  So many questions arise regarding how to approach life if he is to possibly have this disability long-term.  Casey has been fighting so long & hard with all of this, he does such an amazing job of trying hard to be present & loving for our family-- and he continues to work hard at being the best pastor he can be.  Usually he has anywhere from 45-90 minutes (it really varies each day) that he can be upright at a time-- and then he has to lay down for awhile to relieve the spinal pressure.  Much of life can be worked around this, & he has more stamina in the morning as he starts the day.

For now, we wait & trust.  We cry at times-- the big kids have needed to process & cry.  It was kinda traumatic for all last Sunday afternoon when Casey neurologically was messed up--crying hard without reason, needing help to walk, shaking with his chills, etc.  Even still I've been amazed at the strength of this man & these kids. Casey has been a joy through so much of this-- he keeps his heart focused & hoping in God for each moment. I'm grateful that this hard road I would never have wanted for my kids-- NEVER -- in the midst of it God still is answering our prayers for our kids.  More than anything I want my kids to know God & love from the depth of their souls-- both are happening through this.   At times this stressed-out momma can barely hold her junk together-- kids still bicker & fight -- and it's a classic home with our own dysfunctional flavor.  But also, we are all learning to be a little more grateful for milestones that used to be "normal"--- because now they are something to celebrate:

* Casey took off work to take Henry out for a breakfast on his birthday-- a huge treat to get away alone with dad.
* Merian had her first soccer game & Casey could watch the ENTIRE thing!  Yay for zero gravity chairs (& even better-- yay for one popping up at a thrift store!)
* Casey saved energy (& upright time) to watch Emmett's baseball practice one evening this week, & it meant the world to him.  That kid looked over at his dad so many times, pretty much eleated to have him there.
* Tonight Grandpa Gary took Merian to the father/daughter dance at our school-- we are so blessed to have my parents living nearby helping us out!  Merian was thrilled to go with her grandpa & dance the night away--- they had a blast.

As we finish packing to hit the road for Mayo again this afternoon, I ask that you would pray with us for this (possibly our last) trip.  Please pray for wisdom for the doctors on this odd situation, the surgeon said he’s never seen anyone like him.  Pray for our kiddos as we leave, I can see in their eyes that they worry for Case (especially after last week's ordeal!)-- pray that they can be at peace & enjoy time with their grandparents.  Pray that we can have safe travels, ask the right questions, & that Case can have the strength for the long days at Mayo.  And healing-- we continue to ask God for complete healing!

We are staying at the same spot as last time, a cute little apartment with a sweet God-loving couple hosting it-- just a 2-block walk so hopefully Casey can rest between appointments.  The amazing hugger Jolyn provides Aveda products, yummy snacks, a darling 50s apartment, & Caribou coffee--- what more could we ask for in a romantic getaway?  Casey was a bit preoccupied the one night he got there as he had surgery prep to do-- and I only crashed there to sleep.  This round will hopefully be better!

May we choose to hope in God, each & every moment.

I pray that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in his holy people. 
Ephesians 1:18

Slimy Pit

Hi guys –  sorry, I know that I am overdue for an update… I was hoping that I could wait and write a better update, but here goes.  This last couple weeks has felt more like a plateau.  The virus has made it to my spinal fluid, and is causing my neck to be very weak and tired (as well as some back pain).  I continue to be able to be active for several hours in the mornings, but then I must lay down and rest my neck more and more as the day goes on. This week I was able to  go to church the last two Sundays, and get a lot of ministry done during the week, including being able to get out to church a few times, joining staff meeting on Monday morning, and visiting Abbie and Chris in the hospital.   It feels good to be back at it.  I only had one bad headache in the last couple weeks, and Katie and I actually went out on a date Thursday night thanks to the Youth with a Mission workers.  So there is a lot to be thankful for.  

But I still have weird sensations in my head & ears pretty regularly, and I still am somewhat sensitive to light and sound (although I have come a really long way and can put up with a lot now before I need to go back to my cave ).  The weirdest thing has been the twitching, which affects many parts of my body many times a day, especially when my head/eyes/ears are tired.  The vast majority are very small twitches that you wouldn't even notice, but I certainly notice them – they are creepy reminders that my brain is still not normal.  If I have to live with these symptoms the rest of my life we will definitely survive -  it could be a whole lot worse.  But of course I am praying and hoping for more healing.  The first couple verses of Psalm 40 say: 

“I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand.”

I had started writing a song based on those verses several years ago, called "Come quick."   It started as simply a prayer for help/healing.   But as I was singing it this last couple months, God convicted me that he wants more from my heart than just asking to escape-- he wants my love and trust and thanks in the midst of trial.  So I finished the song as a prayer to God to help me (us) not just with healing but to have the right heart.

 The lyrics are below, and here is the link for the audio of me singing it in my bed with my ukulele: https://www.dropbox.com/s/o11uxpoudijxl76/Come%20Quick.m4a?dl=0

 Love you all, 

Casey 

I'm sitting here in this slimy pit
Trying to be patient
But I could really use a lift
So come quick

I know this is no accident
My Lord you're much too smart for that
So help me make the best of it
here in this pit


Even in the pit you deserve to be praised
For life and breath and endless good things
For unfailing love and sustaining grace
be praised

I don't mean to be whiny
But this hole just ain't real comfy
I'm praying for new scenery
So come quick

Lord you've endured far worse than this
And you emerged victorious
when the time is right you'll rescue us
out of the pit (thank you Jesus!)

If someone's walking past my pit
and hears some noise come out of it
I want it to point them to Him
to point to Him


So help me grow close to your heart
and learn to love you more and more
and become a true worshiper
as I sit (here in this pit)


Even in the pit you deserve to be praised
For life and breath and endless good things
For unfailing love and sustaining grace
be praised
for providing my daily bread,
a soft warm place to lay my head,
and love of family and friends
be praised
for your suff'ring on our behalf
for winning us life after death
for Glory to come that can't compare to this
be praised

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