A True Story.

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It was three years ago already.  Can it be?  Three years since we went to the Emergency Room on Christmas.   It seems like yesterday and it seems like a hundred years ago.   Joel had pneumonia that was not improving.  He was so bad by Christmas that he needed some sort of short term help at least.  We were visiting my mom for Christmas, around 4 hours away from our house and the doctors he had been to at least three times in the last month.  There was nothing that could be done for him at the ER that had not been done already.  After a breathing treatment, we were sent home.

The following day we drove home.  We made (another) doctor’s appointment for the next day.  Our hope was that He would be admitted to the hospital, so we could figure out what was going on.  Luckily, that was the doctor’s plan as well.  Joel got admitted right away.  Since we were hoping to go to the hospital, I had dropped Jonah off at a friend’s house.  Joel and I got settled in the hospital.  Some routine tests were run that first afternoon, as well as a bronchoscopy (pulling a piece of tissue from Joel’s lung to be analyzed.)

I left the hospital around 9pm- I had to pick up Jonah and arrange care for him for the next day.  The next morning, our beloved friend Mike showed up at our house, bright and early.  He volunteered to watch Jonah for as long as was needed that day.  About five minutes after he showed up, it happened…the phone rang.  The event that happened next I will never be able to forget.  I answered, only to hear Joel on the end of the line.  He was…sobbing, hysterical.  Quite literally, I can picture this exact moment…his words:  “The doctor just came to my room.  He had test results.  It’s not good…I have HIV.”  The next hours are a blur…Somehow I got to the hospital…somehow Jonah got to my sister’s.

Here’s what had happened:  some young, jerk doctor had come into my husband’s hospital room (while he was by himself WITH NO SUPPORT WHATSOEVER, and WHILE PNUEMONIA WAS KILLING HIM) and told him that he had HIV.  That the standard (first) HIV test came back positive, and that he would have the secondary test run to confirm the results.  That he could expect that it, too, would come back positive, but that it takes 4 days to get the results back.  Oh my GOSH, you guys, he even told Joel that “living with HIV is different now than it was before.  There are medications that make you live a longer, better quality life than 10 years ago.“ I cannot even tell you.   We thought he had HIV.  We were so very confused about how he got it, but still…we thought he had it.  And therefore I thought our entire family would have it…me, Jonah.  It was…devastating…

So that happened.

And THEN we had to figure out what in the world was actually going on with Joel.  The finding out part happened pretty quickly, actually.  Luckily, one of the beloved main characters of this story arrived at this point -Joel’s infectious disease doctor.  Once the results from the bronchoscopy came back, he was able to clearly diagnose Joel with something called blastomycosis.  “Blasto” as it’s commonly called occurs when someone inhales a fungus spore and it gets lodged in their lungs.  It is rare, and deadly, primarily because by the time a person figures out what they have, it can be too late for treatment to work.  I do think another two weeks and Joel would not have pulled through as well as he did…

It was only day two of the hospital stay…in the 24 hours prior I had found out that my husband had HIV and this rare and life threatening fungus.  I cannot even tell you.  My whole world was turned upside down in the blink of an eye.  I was already emotionally fragile, as our 3rd miscarriage occurred only months before.   Plus, Joel was worsening, and now highly medicated.  So the actual scientist in the family was lying on a hospital bed, completely out.  I was left to figure out what was going on, and what we were going to do.   I was very aware that I was losing my mind.  As I’m sure happens with most people in this situation, I went into crisis mode- I was hyper functioning.  I knew my body had to be as highly functioning as possible, so I did the following:

  • I got myself a yellow legal pad and I took fervent notes anytime any doctor came in to do his rounds, just so I could make sense of it all.
  • I ate incredibly healthy- making sure to get protein, fiber, and enough water.
  • I went for walks in the hospital when Joel was sleeping.
  • I tried to get as much sleep as I could- which didn’t really happen…I was a functioning insomniac
  • I tried to keep Joel’s family in Ohio as informed as possible.
  • I journaled as much as possible, which usually was in the form of updating the prayer chain at church, emailing our social circle, etc.

They started treatment for the blasto right away.  Which…was the worst 48 hours of my entire life.  The first and most effective treatment was an interveinious medication, similar to chemotherapy.  The plan was to run the meds overnight, over the course of three hours.  The first night was horrible.  Joel’s veins kept collapsing, so they would have to shut down the medication, get a new IV administered, and start it up again.  When the medication was being administered, his body would shake violently, and he would hallucinate.  Twelve hours later he was finally done with the first batch.  The second night was worse…primarily because I knew what to expect.  It was…bad.  Really, really bad.

Also, at the same time, because it was a weekend, and then the New Year’s holiday, the labs were closed for days at a time and what was supposed to be a 4 day turn around on the 2nd HIV test turned into seven…

By now, it was New Year’s Eve.  In the movie While you Were Sleeping, the guy was in the hospital on New Year’s.  The nurses were singing Old Lang Syne and toasting.  I remember thinking about that, as I sat on the floor in the hallway of the hospital outside of Joel’s room.  When that clock struck midnight, no one was singing.

I was so very broken- I would weep openly, pretty much the entire time he was in the hospital.  Plus, because of the way the first morning went down, I was obsessed that no one talks to him unless I’m in the room.  I wrote my cell number on his white board and made sure every single person working knew my mantra:  “no one talks to him unless I’m in the room”.

It was a strange mix of admiring my own strength, and knowing, for certain, that I was quite literally going to lose my mind at any minute.

I plastered Bible verses all over his room.  I read my Bible like a madwomen.   I knew- this was the moment I was going to make a choice:  either everything I had ever claimed to be true about God was true…or it was all a crock.  I knew.  It was true.  It was not a lie.  And God showed up, in that little hospital room.   Not in a pretty, tidy way- He didn’t make it all stop- but He was present  in our mess.  The Holy Spirit definitely helped my mind and body to function in the midst of the crazy storm I found myself in.  A verse from Isaiah became our resounding theme:

When you pass through the waters, I will be with you; and when you pass through the rivers,they will not sweep over you. When you walk through the fire, you will not be burned; theflames will not set you ablaze. Isaiah 43:2

The nurses were all so very kind to me.   I felt bad for all them for having to deal with me.  Which is funny, because they all felt bad for me…The day before Joel was discharged, the head nurse told me that they were heartbroken for me- because they knew that either the HIV test was a false positive, or that this was how I was finding out that my husband was having an affair…

We had a couple of people telling us the whole time that it was a false positive.  People who had the knowledge to know stuff like that.  People like our friend Lee, a respiratory therapist who just happened to be doing a four or five day shift at the same hospital.  He would stop by after his shift was over and talk to us. I appreciated his confidence in the false positive so much and wanted to believe that what he was saying was true.  But because our situation started with such chaos, and because the jerk doctor told Joel that it was TRUE, not just a possibility, but true, I simply could not believe it.

Joel’s 8th day in the hospital was the last day of his infectious disease doctor’s shifts.  The next day we would get someone new.  He came by the room to say goodbye.  Seriously- not even on a final round, but to say good bye to us.  This man- he was a gem.  He was the best doctor I have ever, ever worked with.  He was personal, and informative.  He wore sweater vests every single day and sounded  just like Patrick Dempsey.  He obviously cared for us.  He told us that he “googled” Joel because he liked to get to know his patients.  In the first half of the story, Joel was pretty much out all the time, so there was no real way to get to know him other than to google him.

The next day, when I saw him at the nurses’ station, I knew something was up.  He came BACK to the hospital so he could be the one to give us the news.  After 9 days in the hospital, 9 days of thinking HIV was our new reality, 9 days of horrible medications and wondering if Joel would survive, the fog was lifted.  He told us that, yes, the second HIV test came back NEGATIVE.  That Joel did NOT have HIV.  And that Joel could go home the next day.  A long-term treatment plan was made for the blasto, questions were asked and answered.  I got to sleep in my own bed that night.  And then, the next morning, I picked Joel up and took him home.

In the months that followed the hospital stay, I could see that I had a small level of post traumatic stress.  I don’t know for sure, but I could see that being common for people after something like this.  I don’t think about the hospital stay on a regular basis anymore.  In retrospect, of course I see that this story had a happy ending.  Three years later, Joel is healthy.  His lungs are functioning almost normally.  None of us have HIV.     And as I reflect on this part of our greater story, I don’t necessarily have any grand wisdom.  But what I do have is this:  Of course I feel like I’m losing my mind sometimes…  In the course of four years, I have had three miscarriages, almost lost a husband, then found out that there is no way we will be able to conceive more kids.  Of COURSE I am a hot mess.  I should be after all this.

I’m not one to make New Year’s resolutions.  But I do make goals all the time.  If you were to ask me, I could share with you an organized list of goals according to the time in which I’d like to complete them.  For the day, week, month, 6 months, and year.  But- above them all is one thing:  my goal, for each day, is to get through it.  To do the best I can where I’m at.  And to be okay when my best is just really messy.  I don’t know what to expect from 2014.  I am neither hopeful nor weary…just a strange kind of present- in THIS moment.  Because that is the only place I know to be right now.

 

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6th Caroline Project: Meals and Cookies

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I’ve talked to you about my church before; tons of times. Because it’s just so very much a part of my life. And I (we) have strong opinions on giving financially to our church-basically that if you can (i.e. you have a job that pays you steady income) you should.  And you should do it regularly (i.e. whatever set amount you decide to give, you should give it each and every time you get a paycheck.)  AND, that your LIFESTYLE SHOULD ADJUST SO THAT YOU CAN DO THIS (as opposed to giving adjusting to meet your lifestyle).  I know there are situations where giving is not so cut and dry- but this ‘system’ is what works for us.

This is never something that is legalistic to us – meaning – never do I think God’s love for me is because we give to our church financially.  Additionally, our giving is not something that is done as a result of any warm and fuzzy feelings brought to us by our pastors, the worship team, or what Jonah learned in Sunday School that day.  It’s just more factual than that.  I love my church.  I believe in what my church is doing.  I give to my church.

Anyway…the point is that since we have been able to give, we have always tried to make a point do so regularly.  And then, when additonal opportunities present themselves, we try to give to those opportunities on top of what we give regularly.  Make sense?

We knew that there would be at least one Caroline Project that would be in conjunction with our church.  We knew it was time in November people started talking about the Christmas meals that our church helps to provide for those in our community who find themselves in need.  This started last year and runs with the local food shelf.   This event spoke to our hearts because we wanted to do something right here in our community.  Plus, it gave us the opportunity to support something financially as well as volunteer.

So, along with many people in our church, we bought a couple of meals. And yesterday we made cookies, dozens and dozens dozens of cookies.  And today, hard working, deserving people came and picked up a meal for their family.  This is a church that I want to be a part of…a church made of normal (i.e. totally screwed up) people- who want to give back to their community-without questions or judgments- but with LOVE.

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Jonah made the Berenstain Bears…we had to keep them because they were too ugly to give away. Also, maybe because he was so proud. But mostly because they were ugly.

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Look at all these beautiful boxes. Not yet filled in this photo- just hundreds of empty boxes.

Mercy Wild…

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Mercy Wild.  One of Jonah’s favorite Christmas songs right now is Hark the Herald Angels Sing.  Only he calls it “Mercy Wild”. I don’t know why…Joel and I sing the words mercy mild, but Jonah hears mercy wild.  Every time he says those two words, I practically fall apart at their depth. Mercy wild…It’s true, isn’t it?  God’s mercy is wild.  It’s fierce and untamed. It’s hard for my human brain to make sense of it.  And I’ve got this feeling that it might not supposed to make sense to me.  Not completely anyway.  It is wild.  And, oh how this unstable human needs something fierce in her life.  But not just anything.  A love that is wild and stable at the same time- a mercy that treats me differently than I deserve.

The lyrics that are standing out to me this Christmas season- “The wonders of His love.”  Like- it’s as if I’ve heard them for the very first time.  Mercy wild.  The wonders of His love…  Sometimes it seems that the more I see of God, the less I understand of Him…because I have maybe put Him in some sort of box so I could understand Him better.  But I think that part of the point is that He’s so big and different than my humanness.  Oh maybe it’s the place I’m in right now…the place of desperation and grittiness- kind of a mess.  My mess is wild, and I am abandoned.  I think this might be the most honest I’ve ever been with God…maybe in my whole life.  He’s meeting me in this place, over and over again.  It keeps looking different than what I imagined it would look like. It’s so gritty and real, and raw and…wild.  And it makes me feel uncomfortable and safe all at the same time…the wonders of His love.

The Cord (about my people.)

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For this extrovert, a huge part of what makes our lives so very beautiful are the people in it. Our wedding was the first time I really noticed that I place a high value on relationships with people…the presence of all those people who came together to celebrate Joel and I…it warmed my heart more than any material gift they could have given us that day.

My Mother-in-law, a former Methodist pastor, married us 11 years ago.  She presented us with a piece of rope- beautiful, soft and burgundy.  She discussed Ecclesiastes 4:12 “Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken”.  Though a common verse  used at weddings, her insight to it was new to me.  I had previously been presented with the idea that the three stranded cord was the bride (me), the groom (Joel), and God.  Yes, of course, I do agree God should be entwined with the bride and the groom.  But the three cords presented to us on our wedding:  Us, God, and the crowd of people surrounding us.

Eleven years.  We have been married eleven years.  It feels like two years and it feels like a hundred.  I feel young and ancient all at the same time.  This year we celebrated our anniversary by taking a stroll in a lovely downtown on a balmy November night, followed by a delicious meal.  My in-laws babysat Jonah.  They all live so far away…we celebrate Thanksgiving together every year- one of my favorite family traditions.  There we were, surrounded by family- These people, who love each other.  This family, who, when one of its members lives hundreds of miles away, makes a tradition out of seeing them.

When you’re born into a family, it’s just normal…these are the people you grew up with and grew in to.  When you marry into a family it’s different; usually it’s harder.  I am so very aware that few people feel about their in-laws the way I feel about mine.  These people – who I would have picked to be a part of my family if I could have picked from anyone in the world – I love them.  I am supported by them.  They love well.  If Jonah gets married, I hope he has in-laws who love him as well as mine do me.

My own family…my mom and sister…I cannot even tell you.  One of my first blog posts was about my mom, a woman who has been my biggest fan my whole life. And my sister…who, in our adulthood has become one of my best friends.  I like being near her more than anyone else in the world.

I have these friends…with whom I can have conversations that matter- about our hearts, and social justice, and Jesus, and food.  Not once have they made me feel like I need to wear any kind of mask around them- because my messiness does not make them uncomfortable.  They are silly, funny, and sincere-dare I say they are world changers.  I am fortunate to know them.

I go to this church…full of real people.  The best way I can describe it is that these people are all broken and being mended. They are a motley crew…and I adore them.

And this isn’t just in my personal life…on a very regular basis, at my job, I have these valuable “life talks” with my colleagues, and with these college kids whom I adore…as old lady as it makes me sound, they give me hope in the future…they are…passionate, intelligent, Jesus lovers.

My step dad once observed about me that I “gathered people.  Wherever I went.”  He was right.  And these people have become my buoys- life preservers in a life that sometimes makes no sense.

Some thoughts on what I’m learning while walking on this narrow road

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Many times over the course of this past year, Anna and I have paused to reflect on what God is teaching us through this painful experience. There are several main themes in my journey – things like: working through the past wounds of rejection, being courageous enough to be vulnerable, allowing God to show me that I have been truly accepted in sonship, and that allowing him to minister to me in my pain (not running from it but fully embracing it) is one of the greatest acts of obedience that I could ever hope to engage in.

I would like to spend a few moments on the last one. We have discovered that obedience is a central message/theme in our story. Much of what we are choosing to do, choosing to fully embrace, choosing to walk through can be summed up with the word – OBEDIENCE. It took us a little while to discover this but God has been faithful to continue to reveal this theme to us over and over again. We believe that it is what we are charged with; God has called us to obedience.

One thing I have discovered is that obedience costs us everything. It is painful. We often suffer when we are truly obedient. In the book The Cure, authors John Lynch, Bruce McNicol and Bill Thrall have this to say. “We’re also introduced to the reality of suffering which results from aligning ourselves with the truth. God employs this suffering to mature the humble as we come under his influence. As we grow in trust during this suffering, God expands our influence. We are experiencing that other people increasingly trust us with truth.”

We are called to align ourselves with Jesus, who is our best model for obedience. I mean He suffered obedience! His agonizing and brutal death on a cross was one of the greatest acts of obedience we have ever heard about. The crazy thing is, it was this act that taught him obedience. “Although He was a son, He learned obedience from what he suffered” (Hebrews 5:8). This is part of the amazing humility of Christ. He emptied himself, became a man, and suffered death – something gods typically don’t do. He did this so that we might understand the gift of obedience; as an example to us,that we might learn to be obedient. Obedience ultimately cost him his life. Something He laid down gladly out of his great love for the Father and for us. Obedience always comes at a cost and that cost can be great. Pain likely will be included and suffering as well. But I don’t believe there is anything quite as utterly holy as someone who is walking in obedience.

Some questions may come to mind for you, they certainly have for me. Why are we called to obedience? Is it just so that God can lord over us? Is it just so that we can follow all the “rules”? No, I really don’t think so. I think we are called to obedience to be healed of our wounds. We all have them. We are all broken…so incredibly broken. We are stuck. Obedience requires that we trust. True and holy obedience requires that we let God into the deep recesses of our souls. It requires us to acknowledge and to deeply feel our wounds. “A wound that goes unacknowledged and unwept is a wound that cannot heal” (John Eldridge).

For Anna and I, obedience looks like this: First, we are called to look into the eyes of those suffering and provide them with whatever we can sacrifice (Caroline Project). More so we are called to suffer with them. This, most of the time, is the easier obedience although it can be painful and can cost a great deal. Quite honestly we don’t always want to be obedient. Frankly, I would prefer to have a baby in my arms, but for now it is obedience.

Second, we are called to feel our pain. Anna described it in an earlier post by stating that we are staying in the discomfort. This is the harder of the two acts of obedience. I hate feeling this pain. It sucks. I hate that my body doesn’t work and that I can’t fix it. I hate that I have these stupid spiritual wounds that require healing. A healing that isn’t all that pleasant and not at all easy, but the narrow road by its very nature isn’t pleasant and easy. However, what I learned through reading John chapter 5 the other day is that deep and complete healing requires that we do something (acts of obedience). It requires the lame to pick up our mat, and walk. It requires that we walk in obedience even if others may question our actions.

I have no idea what God is going to do with our circumstances; He may do nothing to change them. I do know that if I allow him to heal me through these acts of obedience, He faithfully will do so. I really have no hope of healing apart from this. There was a point in John chapter 6 where Jesus asks his disciples if they are going to leave him. I feel that Anna and I are at that moment in our lives. He is asking us – “Are you going to leave me???” We have come to the same conclusion as the disciples did – “Lord, to whom shall we go? You have the words of eternal life.” This, friends, is obedience. And I invite you to join us on the narrow road.

 

An 8pm bedtime…

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It happens every so often that Joel and I will be going along nicely, and then WHAM- something knocks us right over and it’s like we’re reminded of the heartache of our circumstances all over again.   Joel had another doctor appointment yesterday; to talk about some chronic pain he’s been having.  At this appointment, he received no new news.  Just confirmation regarding previous information.  Oh, but what was confirmed again just sucks…no kids, no reason, pain in our hearts and in his body.  It left us weeping all over again.

I’m just so sad.  My reaction is to take action.  Because it would be easier.  I want to adopt or do IVF or commit to having only one child.  I’m mad that we have no clear direction to go- none.  And I’m mad that these are the cards we’re dealt.  It seems so very unjust.

Why is taking action my gut reaction to disappointing blows?  I hate the obvious answers:  because I want to have control of a seemingly pointless situation.  Because I want to know what is going to happen.  Because I want this to make sense…I want it to be happening for a reason.  Because I am just tired and I want it to be over.  Because I want it to get easier.

It’s that moment where you believe with everything you are that God knows all about your situation,  and there is a wrestling match about that.  Because you also know that He could have made it different, but didn’t.  Last year, when we were still trying to find out the facts about our infertility (such an overwhelming and gritty time for me) I came across a quote from Ann Voskamp that was equally painfully confusing and so very comforting:  “Nothing comes into my life unless its filtered through God’s loving fingers.”

We can only land on this:  We don’t know what is going to happen.  We don’t know why this is happening.  But we know that God sees us. He is Emmanuel still…God with us.  We trust that He will show us what the next step is, just as He has done so many times before.  And we truly believe that being here, in this active-still place, and giving of ourselves, is the action we are to take in this moment.

And when my circumstances overwhelm me from out of the blue, and I find myself in a place where I cannot reason this out, I have one tried and true method.  Are you ready?  It might be the most profound thing you’ve heard all day:  I go to bed.  Everything looks better when you’ve had some rest.  Last night was an 8pm bedtime…