Six Hundred Bibles

Ling longed to have a complete Bible of her own so she could study it and help other believers understand it. So when she heard that a woman only four miles away had Bibles available, she couldn't get there fast enough. It turned out a woman had a few Bibles that had washed ashore after members of a Christian mission group had been forced to throw them overboard while attempting to smuggle them into China at night. Some believers along the shoreline had recovered the Bibles, and this woman had carefully dried the pages one by one in the sunlight.
When Ling asked her for one of the Bibles, explaining how God had called her to preach the gospel, the woman became alarmed. "No, no, no!" she answered. "These Bibles are very valuable. Do you know how hard it is to get a Bible? And how do I know you are even a believer?"
Ling persisted in her pleadings, but was unsuccessful. The woman would not part with a single one of her Bibles. Poor Ling looked so crestfallen the woman told her that if she could recite the Lord's Prayer without a single mistake, she would reconsider.
Ling left, encouraged that there still might be hope. She traveled back to a village where she knew there was a Bible in the home of an elderly believer. The brother cherished the Bible with a holy reverence, and when Ling saw it, she understood why. The old man's Bible was completely handwritten. In fact, the brother's hands were now permanently twisted from the thousands and thousands of hours he had spent carefully copying each verse character by character.

Hearts of Fire: Eight Women in the Underground Church and Their Stories of Costly Faith, page 204-205

Today Johnie and I send our six hundredth Bible overseas. I have so many emotions.

A little more than ten years ago, just a few months after we were married, we bought our first home and moved in. I felt completely overwhelmed by home ownership. I worried that a small leak would require a complete roof reconstruction that would surely bankrupt us. We argued about whether or not to install lawn sprinklers. They're very common in Kansas, but I grew up in Kentucky (where the rain takes care of the ground) and am pretty cheap to boot. I could not fathom spending time and money to pour perfectly good water out on the grass, even if it was brown. What a waste.

I was homesick. I was struggling to love this big dull city I had landed in the middle of. I felt vulnerable without mountains and lifelong friends and family around me.

I didn't know what to do with my time. Should I work? Should I volunteer? Should I have a baby? (No. But was I wrong to feel that way?)

It was during this time that my eyes were opened to modern-day Christian persecution. I didn't realize our brothers and sisters were being tortured and martyred in other parts of the world. I heard some of their testimonies. I read Tortured for Christ by Richard Wurmbrand. And I bought a book that would forever change my life: Hearts of Fire: Eight Women in the Underground Church and Their Stories of Costly Faith.

These were eight unimaginable stories of women living and breathing on the same earth I was living and breathing on. They were ripped from their families. Tortured. Faced with unthinkable circumstances and still praised the Lord.

The roof. The sprinklers. The skyscrapers and one way streets. The distance between me and my family. They all faded away. I saw how insignificant all of those things actually were and just how significant faith and service to God are.

I was convicted anew of a love for the Holy Word when I read the story of Ling, a woman in China who became a Christian as a young girl and would walk from village and village to read and copy and memorize snippets of the Bible. She worked toward getting her own copy of the full Bible for many years before she finally secured it. And then she dedicated her life to sharing it with others. She eventually began smuggling Bibles to churches in China and faced several prison sentences and was tortured for those efforts. Still she persevered and never gave up on her mission. Each time she was released from prison, she continued to share the Word.

I read this story from the comfort of my climate controlled living room couch. With multiple copies of the Bible on my bookshelf. Days and weeks would sometimes pass without me even opening one. And while I relaxed in apathy, she risked her life and well being for that same book.

I read her story in 2007. It ended:

Ling now has a vision for the International Olympics, which is coming to Beijing in 2008. She believes this will be an incredible opportunity for the house churches to grow and flourish. Back to work...

I am one of the least evangelic Christians around. After I outgrew a horribly embarrassing vocal and ugly (and wrong) condemnation of others phase in my teenage years, I don't really feel compelled to share scriptures or verses or sermons. I usually live out my Christianity in other ways, and thank God for those who are called to evangelism. (I think its part of the beauty of a body with each member serving their own function.) But I wanted to help Ling distribute Bibles. If people were literally dying for a copy of this precious book, the least I could do was help them.

The same organization that published the Hearts of Fire book had a program called Bibles Unbound. For $30 a month, they ship five Bibles to people in the underground church who request them. The Bibles are translated into their native language and packaged in such a way to look like a non-religious book.

At the time Johnie and I didn't really have any disposable income to speak of. We would have to cut something out to take part in this program. Giving up a meal out each month seemed like a small sacrifice in the face of a sister who was giving up her freedom. So we signed up.

I was given the names of the Bible recipients each month, and in those first few months I actually packaged the Bibles up myself to mail out. I would hang the names on my refrigerator and pray over those people.

Month after month ticked by. Johnie got a promotion and I got a full-time job and we no longer even felt that monthly donation for the Bibles. Eventually, I opted for the organization to send the Bibles on my behalf in an effort to help expedite the process and cut down on overall shipping costs.

I signed up for the "where most needed" option and was given a ministry page. It felt uncomfortable. The header: "Mission Page of Mrs. Amy Rose Karr." I'm not 90. (I was uncomfortable with "Mrs." and "Karr" at that point in my life but I've grown into them over the years.) And how was a small monthly donation a "mission?" It felt too grandiose for my little contribution.

But over the years, my "mission page" has grown. Bibles I sponsored have been sent to North Korea, Indonesia, Vietnam, Hmong, China, Nepal, Sri Lanka, India, Pakistan, Iran, Egypt, Ethiopia, Nigeria, Columbia, Cuba and Chiapas, Mexico. And now there are nearly 600 names to scroll through (a few dozen Bibles were given covertly, so I only know the name of the field worker who distributed them).

When Johnie and I sponsored those first five Bibles, we weren't sure if we'd sponsor any more. There have been times when we haven't missed the money as it left our account. And other times when we have scrounged up the funds for that month's donation knowing we might not have one the following month.

But, by the grace of God, the story of a young girl in China reached a young, self-absorbed girl in Kansas. And even though she didn't really appreciate or share the Bible as she should, she was motivated to take a small step to send out a few Bibles to unknown Christians overseas. How beautiful is the work of the Lord.

I share this because I grapple, like many, with things like my purpose and my calling and God's will for my life day-to-day. Should we buy this house or this car or this bar of chocolate? Do I really need a smartphone or a TV? How many toys should a two year old have? Should I lay in bed and pray or push through and get out and get some work done? Or just watch TV? Is this vacation too much? How do I honor the Sabbath? To what, specifically, should I give my time and my money and my attention? How in the world do I make things different? When should I speak up? When should I step back? What, for the love of God, should I even do?

I've made a lot of mistakes and I've gotten a lot of things wrong.

Once when I was listening to a radio story a few years ago about a child just coincidentally meeting their sponsor after they grew up, I began dreaming of how beautiful that would be in my own life. I was driving around Kansas back in those days training nurses on a parent education program to reduce stress (and abuse) related to early infant crying. Those early mornings and late nights on the road I often asked God, "What have I prevented? Will I ever know if any lives were actually saved or bettered from all of this?"

And as I began to imagine one day, possibly from Heaven, getting to see the actual reach of my God-blessed efforts, I realized that it would pale in comparison to all of the people I have passed by and not helped. If the Lord ever showed me the extent of the damage I have caused or allowed to occur because of my actions and inactions, I don't think I could bear it.

It was a crushing thought to me then, but I feel like I have gained a better perspective over the years. The Lord can fix my ignorance and my disobedience. His grace covers me. And it covers my shortcomings.

For a long time I focused on all the things I didn't do well enough. There's plenty there to keep a mind busy. But I have decided instead to focus on the things I am getting right. Though $30 is a meager offering from a comfortable middle class American, the Lord can bless it and multiply it over and over and over again. And if you keep offering up your "little" service, eventually five Bibles become 600 spread all over the world.

This is a time of year when we consider generosity and resolutions and changes in our lives and our habits. It is also a time when we get bogged down in grief from the past or anxiety for the future or dissatisfaction for the day. Turn instead to the little pieces of good you can do. Plant the seeds. The Lord will provide the growth. It may be awhile, or even a very long while, before you see any fruit, but it is there. Give your offering, whatever it is. The Lord will make it more than enough.

A prayer request

Never be afraid to trust an unknown future to a known God.
-Corrie Ten Boom

I can't begin to express how thankful I have been for all the people who are joining us in praying for our baby. You all have brought me so much comfort through these rough weeks. At just the right moment I'll get a card or a note or a text or a gift or a word that speaks directly to what I'm needing. It helps me know and remember that God is near and that He cares and is taking care of us in the sweet, all-knowing way that only He can.

I wanted to post a prayer request this morning, but it kept growing longer and longer. So for those willing to read an emotional pregnant woman's early morning jumbled-up thoughts, I figured I'd write a full blog post.

First of all, I am so incredibly thankful for a medical team that has been so concerned - and loving - with the health of my baby and me. All the appointments and blood work and ultrasounds are a bit stressful, but I'd rather know all of these things than just be left guessing. And, it is like soothing balm on my anxious heart every time we see or hear something "normal" about our baby.

Through my second chorus of "is that normal?... Are you sure?" yesterday, our midwife was patient and reassuring. I think I asked at least half a dozen times if she saw anything to be concerned about. And I couldn't help but add, "would you please tell me if you see anything at all?"

I sort of thought that yesterday's ultrasound would be similar to the one before. I would leave with a reassurance that everything was fine that would carry me through several weeks. I am not sure if it was because yesterday's ultrasound became a bit more about deciding the sex of our baby, or if most of the discussion centered around all the things that will happen at the next appointment, or if it was something else all together, but I was even more anxious leaving than I was arriving. And I was anxious arriving.

Our "big" mid-point ultrasound is scheduled for next time. This is when they will check for a number of abnormalities, and when a lot of complications are discovered for many women/babies who have complications/health concerns. Maybe it is a normal mom thing that everyone experiences, but I just want so badly for the baby to be healthy. And I feel like I don't have the most stellar genes to work with, nor is my body well-equipped to support a healthy baby. My body attacks healthy things. The baby seems blissfully unaware in the ultrasounds, but I feel like he must be fighting a battle. And as I pray for the Lord to knit him together, I know that this baby's health and well-being rest squarely on His shoulders. Even more than most, I just can't do this.

I will have follow-up blood work done to measure my antiphospholipid antibody levels. Those test results, in part, will determine whether or not I should take blood thinner injections. I pray I will not have to deal with any more complications at all. And while I am willing to take blood thinners for the health of the baby, I would rather not have that issue at all. I am most nervous about blood clots causing some type of issue for the baby or me. And if the doctors feel strong blood thinners are necessary, I am uncertain what to do. This treatment comes with its own set of worries, concerns, side effects and dangers. As of now, I am unsure how I will proceed if the doctors feel that stronger medications are needed.

So, above all else, please continue to pray for the health of our baby, Matthias. (I am still transitioning from calling him "baby" to calling him by his name.)

Beyond that, learning the sex of our baby brings a whole new dynamic to pregnancy. Johnie and I have always said we are much more concerned with our baby's health than our baby's sex. But we are glad to know we are having a boy. On the scale of boy-girl preference, I leaned slightly toward girl. Even though we tried not to think about it much, we had dreams for a little boy and dreams for a little girl. Giving up our little girl dreams were a little sad, but I think there would have also been sadness to give up our little boy dreams.

There is so much I am excited about - and relieved about - with having a boy. I remember how much fun my brothers were when they were babies and toddlers. To get to experience that again will be great. (If Matthias is anything like my brothers.) Also, if Matthias looks like Johnie or acts like Johnie in some ways, I think I'm going to enjoy it. (There are some traits of my brothers and my husband I'm hoping he doesn't get. I had been praying for this baby to be protected from bad/negative traits/genes and my brother shared with me what he had been praying for the baby: That the good things from the Roses replace the bad things from the Karrs and that the good things from the Karrs replace the bad things from the Roses so the baby is made of only good things.)

But, still, I've never been a MOM to a boy. I feel like I have so much to learn. (I'm open to any book suggestions you think may help.) I felt like Johnie must have felt shortly after we learned we were pregnant, when he wanted to make all of those decisions that won't affect the baby for several years. I felt an overwhelming need to start planning and working on things we won't have to deal with for more than a decade from now with our son.

I felt much more prepared to raise a girl than to raise a boy.

There's still so much we don't know about Matthias. Most of our questions are ones we would have whether our baby was a boy or a girl, it's just that we've only really started to ask them now. Will he be athletic? Will he be adventurous? Johnie and I aren't either of those things, but we want to encourage him. Thankfully we have a diverse extended family we hope will help fill in our gaps.

Will he share my love of cooking or of writing? Will he enjoy going hiking or fishing with me? Will he be interested in technology and programming like Johnie? Will he love Christmas? (If Johnie's bah-humbugness is a gene, I hope he didn't get it.) What will his favorite season be? Will he be quiet and reserved or way more outgoing than either of us?

I hope he loves to read books. I'm assuming he won't be very interested in my childhood dolls and toys, or with building a dollhouse with me, but maybe. Judging from many of my nephews, I'm trying to prepare for many more superheroes and legos in my life. (Though my life is currently void of either of those things, so any child would change all of that.) We'll just have to wait and see.

I have prayed a lot for Matthias in my womb, but I feel led now to pray for his life post-birth. I want him to be strong and independent. I want him to be respectful and loving and kind. I want him to be confident. I want him to always feel surrounded by the grace and love of God and to be completely sold out for His will in his life. I want him to love his mom (and his dad) a lot, but not too much.

And as I think of what I want for him through all the stages of his life, I just go back to my original prayer. I hope he makes it to all the stages of his life, healthy.

Again, thank you all so much for praying with us!

I really AM pregnant

You created my inmost being; you knit me together in my mother's womb.
-Psalm 139: 13

From the time I saw those two lines I wanted more information. What did this mean? Really. I wanted an ultrasound so we could get to the bottom of what was really going on.

I didn't get one at my first appointment and waited impatiently for the second one. I didn't feel like I could really accept that I was going to have a baby until I actually saw that there was a legitimate baby growing inside me.

While I was relieved that this first sonogram would be performed by a highly skilled OB, I was nervous about the actual encounter. First of all, he is a man. I usually refrain from allowing men that kind of access. (Women too, actually, but I more easily make exceptions for female doctors.) Also, a couple of my friends already warned me about their bad experiences with this particular doctor. I had hoped I would be scheduled with someone else in the practice.

Not having my doctor of choice only added to my anxiety about this appointment. I was afraid my uterus would be empty, or implanted with something unable to grow into an actual baby. And what if it was a baby, but without a heartbeat? The midwife was sure there would be a heartbeat, but I wasn't.

Several of my friends tried to assure me that there are several legitimate reasons why a heartbeat couldn't be detected that early. Namely, if I wasn't as pregnant (as far along) as I thought I was. I tried not to get my hopes up about a heartbeat, but from everything I read and knew about the timing of everything, I knew there should be a heartbeat. (Although I conceded that my not-being-able-to-get-pregnant calculations were obviously wrong, so maybe I was just COMPLETELY wrong about everything going on inside my body.)

I tried to control my anxiety about everything as I waited for the appointment. I would just feel so much better if I knew, I thought. Johnie and I had planned a fun April Fools Day announcement to our friends and family. But I wanted to chicken out. Why not wait until after we see a heartbeat and make a less fun announcement?

But after I saw the heartbeat, then I'd worry about some other thing and want to wait until after that thing was resolved before telling people. I talked with Johnie and as we kept playing out the "wait until" scenario for telling, we got to the point at which I delivered the baby and thought we might as well just have some April Fools Day fun and pay whatever potential consequences the following day at the appointment.

It was a long day of waiting. I couldn't really find the energy to do anything but wait that day. (And think. And pray.) Finally it came close enough to an acceptable time to leave the house and we got in the car and headed toward Lexington.

At the doctor's office, I waited and waited. My nerves would get the best of me and I would start crying as I waited, playing out all the possible scenarios in my head. Then I would try to pull it together so I wouldn't be crying when they called me back. Then I would start crying again because they STILL hadn't called me back. Then I would straighten up again. And again. I worried maybe they missed my arrival or my appointment. Or that I would find out the doctor wasn't there or the ultrasound machine wasn't working... and I'd just have to wait another week.

Friends were texting me well wishes throughout this time, which calmed me... and also made me cry. And then I'd pull that together.

(It was only 45 minutes... I'm not so good with waiting.)

And then I finally got called back and had to do those enjoyable things like pee in a cup (I had been waiting for that too), and have my weight displayed and... while I was getting my blood pressure taken and trying to will it to be low, I was given the following information: "The doctor has a student shadowing him this week. Would it be okay if he is also with you for the ultrasound?"

Another boy?!? Blood pressure, stay down. Where would he stand? What would he do? Stay calm, blood pressure. Should I ask Johnie what he thinks? No, I need to make this decision myself. I really don't want anyone else in there. But am I being unreasonable? I mean, he's a student trying to learn. Should I just say its okay and get over it? Is this affecting my blood pressure? Why would they ask me this while taking my blood pressure?! Are they finished with my blood pressure reading yet? What happens if it's high? Will they be mad if I say the student can't come in? I'm just going to say it...

The nurse was really sweet and early in my mental acrobatics she added, "No pressure, and it's your decision." Currently she was trying really hard to focus on a chart and not make eye contact. In case maybe I might feel intimidated?

"I'd really prefer if he didn't, if that's okay."

And the blood pressure was normal. Whew.

Then I went into the ultrasound room and waited some more for the doctor to actually come in. I'd start my nervous cry again and then clear it up when I heard rustling, and then the tears would well up again when the door didn't open.

I took a few deep breaths and reminded myself of everyone who was praying. And of God who was with me in that room. And I still really wanted to see inside my uterus once and for all, but I felt more calm and peaceful.

After what was probably only 5 minutes or so, the doctor came in. And I immediately liked him. He was warm and friendly and shook our hands. He seemed grandfatherly and that only increased when he actually started talking about his grandkids within two minutes of meeting us.

The ultrasound got underway quickly.

I thought seeing my baby for the first time -- with a heartbeat, especially -- would cause some sort of maternal bubble to explode inside of me and I would immediately feel overwhelming, inexpressible love. I thought Johnie and I would instinctively grab one another and cry tears of joy.

But that little blob came up on the screen, and this is how it went down:

That's the baby! Okay, so I really am pregnant. I really am. That little flickering thing, that's the heartbeat. My baby has a heartbeat! It's little heart is beating!

"You're seeing the miracle of life," the doctor said. "See that flickering? That's the heart."

Okay, so I really am pregnant. And the heart is beating!

"Can you see the heartbeat, dad?"

I heard a muffled yes from behind me.

This is the weirdest thing. I have a baby inside my body. I really do. Look at that little heart beating! How can they even tell this is a baby? I wonder which end is the head? I wonder where the baby is at inside my uterus?

"Okay, now we're just going to check your ovaries."

Wait! Just let me watch the baby for a few minutes! My ovaries? That might be cool to see.

"Here's your right one. Looks normal. And over here... your left one. You got pregnant from your left ovary."

You can tell that?! That's where I had the pain! I do know what's going on with me. In your face doctors who didn't believe me!

The baby came back on screen.

Oh, it's the baby! I really am pregnant. I have a baby inside me. Right now. A real live baby. With a heartbeat and everything. God, I can't believe this. I really am pregnant. I really am. This is for real. This is a big deal. Like, major. I'm really pregnant.

It all felt way more clinical and detached than I thought it would. I couldn't believe we were looking inside my body.

Then the ultrasound was over and the doctor talked to us for a few minutes. He said some of the sweetest, most reassuring things, telling me I hadn't made any mistakes and that the Great Physician was in control. And he listened to me and confirmed what I thought about what was going on.

He had said a lot of things during the ultrasound that I didn't understand (dictating notes to the nurse). He never said anything was bad or sounded alarmed, but I wanted to make sure. "Was there anything that looked abnormal or raised any red flags?"

He assured me everything was normal.

I was left alone to clean up and get ready to see my normal midwife. I looked back at Johnie who was staring down at the baby pictures in tears. "I don't know why I'm so emotional," he said.

So my husband cried at the sight of our baby's heartbeat and I could only stare in shock.

I laughed. "I have some idea. You just saw your baby, and it's beating heart, for the first time. I think it's pretty normal. And sweet."

The midwife, knowing our situation, asked me if I had been able to come to terms with the pregnancy any more in the last week.

And then I teared up, "That's a hard question. I feel like I've only really known I'm pregnant for about five minutes."

They took multiple vials of blood from me that day to test for all sorts of lupus-related possible pregnancy issues and I was cleared to not come back for another month. I was thankful to not have to go back for several weeks, but did not settle in comfortably for another month of waiting.

How do I even know I'm pregnant?

The first pregnancy is a long sea journey to a country where you don't know the language...
-Emily Perkins

I have worried so many times that the negative pregnancy test results I received over the years were actually wrong and that I was actually pregnant and I would surprisingly just go into labor one night. Too many I didn't know I was pregnant episodes, I guess. When I got the positive result, I was also skeptical.

How could this be? I mean, really? It didn't make sense. I felt like telling everyone, "We had a positive pregnancy test... we're checking into what this may mean." I showed Johnie the test and I showed my mom the test just to get their confirmation that it was, indeed, two lines. Unanimously everyone who looks sees two.

But I have been a little shocked by how eagerly everyone just accepted the news. I just said (or someone else said for me) basically, "I'm pregnant." And everyone just believed I was carrying a baby inside my body. I started getting presents for the baby within hours. (I already have a shelf dedicated to baby items in my basement.) Some people already had a feeling I was pregnant before I even knew myself. Some people already knew the sex of the baby. They even instantly began calling me mom, momma, little mommy, baby mama. Did they not need more proof of my impregnation, or especially of my mothering skills first? I sure felt like I did. I only had one friend who actually demanded (okay, not really demanded) to see the test with her own eyes. She was with me on not being able to believe it.

I was kind of afraid that I somehow wrongly took the test. That I would wake up one morning and things would be normal and I wouldn't be pregnant. And then I'd have to tell everyone, "Nevermind. I wasn't actually pregnant after all. Isn't that funny? I'm just going to hide now." I'd be the girl so stupid she didn't even know that she wasn't pregnant.

I even took another test two days later just to see if it was still positive. I was also a little worried because shortly after learning I was pregnant my short list of possible pregnancy symptoms vanished and I felt like I normally do. It was still positive.

Still though. I had heard of chemical pregnancies (though I'm still unsure what those actually are) and ectopic pregnancies and other types of pregnancies that trigger a positive test result but fizzle out quickly. How could I know I didn't have one of those types of pregnancies?

I scheduled a doctor's appointment and thought maybe that would help me be sure I was, in fact, pregnant. Even the lady on the phone when I scheduled the appointment congratulated me. (I guess we do just have to take people's word for it whether or not they are pregnant.)

Many of my friends assumed I'd have some kind of ultrasound during that first appointment. Maybe those things are common for first appointments, especially with first pregnancies and high risk situations? I really wanted to see inside my uterus. Babycenter told me the baby was only the size of a sesame seed, but I wanted to see that little seed with my own two eyes. How else could I know it was actually in there?

I tried to prepare myself for a disappointing appointment. Of not being able to hear the heartbeat yet because sesame seeds are so tiny. (Believe me, they're even tinier when you think of them as real live people... How anyone comes to be is a mystery to me.) I had even prepared myself for no ultrasound at all.

Which is what happened. No peek inside my uterus. No confirmation more sophisticated (in my opinion) than the one (two) I had received at home. And yet, having a doctor's official opinion of the reading of the test somehow made my pregnancy more legitimate for some people. "So you really ARE pregnant," they said.

Myself, I questioned the midwife's confidence in my condition. Because I am high risk, she scheduled an ultrasound to be conducted by a high risk OB the following week. "We will hear a heartbeat," she said. She said it just like that. It kind of scared me. I usually try to refrain from definitive statements. How could she be so sure? Do they teach you something in midwife school that allows you to just look at a newly pregnant woman and know the tiny little heart she's growing is beating? Or is there a third line for doctors' pregnancy tests that indicate "beating heart?" (If so, they really should have told me that.)

How was everyone else in the world more sure of this pregnancy than me? I didn't know. Maybe some sort of wisdom is imparted by people who are actually parents and they understand pregnancy better than us unexpecting (maybe that is a bad word choice) newbies.

At any rate, I took my appointment card and resigned to wait another week for some visual -- concrete -- confirmation of this tiny baby.

Home buying redux. Or, what not to do when buying a house.

We couldn't have planned it any better.
-Mandie



For most of my marriage with Johnie I dreamed of owning a home in Kentucky. Before we even had actual plans to move I asked my grandfather to wait on carving our Wichita address into a piece of wood he saved for me from a tree we had planted together. Because I wanted my permanent address to be in my home state.

Years later, I finally know what that address is but I never could have imagined just how long and curvy the road home would be.

Even before we officially sold the home we loved in Kansas we were already looking for Kentucky houses. The first couple of years it was mostly casual internet searches and random open house viewings. We weren't even sure what city we wanted to settle in and visited houses from Frankfort to London and many places in between.

I felt burned by our real estate experience in Kansas and made a list of must-haves for the house and the process.

We began working with a (fabulous) realtor in the spring of 2013 (Jonnie Jean Young). By that time we had decided we wanted to settle in London -- someday -- close to our friends and church family. We found a house we were excited about but we were unable to swing the down payment necessary for a loan on a home that wouldn't be our primary residence for a few years.

The home search was suspended until the following winter. We had a diagnosis for my health issues and it was becoming clear to me that I couldn't keep up with my job and my personal life. We made the decision for me to stop working and, with nothing holding us to Frankfort, to move. By this time a couple of our friends were also home shopping in London. As we learned quickly, each of us had talked to our spouses about how we would love to be neighbors. So, we decided to house shop together.

We considered homes listed in the same neighborhoods. We considered house/lot options to build side-by-side. We looked at land to build a duplex. We looked at properties that included a primary residence and rental home on-site. We looked at large single family homes to remodel to fit our needs. Nothing quite worked.

With no solid prospects, Johnie and I, along with some other dear friends, secured a large rental home in London and continued the search. (In case you haven't already deduced this, Johnie and I don't do housing in the same way as most American families.)

In late July our friends called us about a house they were extremely interested in. It was in the same subdivision as several of our other friends. Actually, some of our friends had been interested in buying it several months prior before they learned it didn't qualify for financing at that time. It had been a foreclosure and by this point had been purchased by an investor.

Before: Bedroom

I had walked around the outside of this house a year or so previously. It was old and dirty and small. And kind of creepy. From what I had learned from our friends who had been interested in it before, it didn't have a lot of the things on my list. Johnie had asked me to look at it with him several times. I always said no.

But none of us were really interested in living in the house. It sat on an acre and a half of land and we were thinking we could fix it up as a rental and then build our two-family duplex at the back of the lot.

Our friends went under contract on the house in August. We began our house-building plans and my friend coaxed me through the front door by telling me it wasn't as bad inside as she had thought it would be.

By the time I actually looked at the house the outside had been cleaned up considerably from when I had just walked around the yard. And the inside had been aired out a little and some of the walls had been fixed.

Before: Dining Room

I stepped through the front door and it reminded me of our rental house in Frankfort. Which isn't a good thing. I didn't like that house. But I had to agree with my friend. It wasn't as bad as I thought it would be.

The weeks ticked by. The end date to our lease crept closer. Home building plans got more complicated and expensive-feeling to me.

I have always wanted a master bath. I'd have one in the house we built. We would have a two-car garage. We were going to have everything on our list. And, someday, even an in-ground pool.
But, as we dreamed of all the nice things we would have in the house we were going to build, I began feeling uncomfortable with the price of those things. And I began feeling uncomfortable with my own greed and selfishness.

Before: Living Room

It sure would be a lot cheaper and less complicated just to live in the foreclosure house. We had lived in the Frankfort house for two years and this one was bigger than that -- with major remodeling potential. But still not wanting to actually live in that house, I decided not to talk about my thoughts with anyone.

The closing ended up getting delayed because of a clerical error with the deed. We were all assured that it was a matter of when -- not if -- it would be cleared up. It was right around this same time I posed the question to Johnie: "What if we just lived in the foreclosure house and didn't build?"

We talked with our friends and, later, with the investor, and a new plan was hatched. As we waited for the deed issue to be resolved, we subdivided the land into two portions. We would get the half with the house, our friends would get the other half to build. And because we wanted to move out of our rental house when our other friends would be moving out, the investor agreed to let Johnie and me determine, coordinate and oversee the work on the foreclosure house so it would be ready when we needed it.

Before: Kitchen

We thought that meant he would be paying for things and the cost would (basically) be rolled into our loan amount at closing. What it actually meant was he would let us work on and pay for renovations on the house before we closed.

So, yes, like stupid people, Johnie and I began working on a vacant foreclosed house we didn't own. By this time, I was starting to feel a little nervous. Because this was for sale by owner, we weren't using our beloved realtor. And because we were initially more interested in the land than in the house, we never had an inspection.

Before: Bathroom

We entered this work phase as we had entered the previous ones: Prayerfully. We knew we were taking a gamble and were risking any money we spent on the house, but we decided it was worth the risk. If it worked out in the end, it would be more than worth it.

We started slow with the work. That means we mostly just spent our time. We spent several days cleaning the house. And we spent a while deciding just what projects we would tackle before we moved in, paring them down considerably since the expenses were all coming out of our own pockets.

This might be a good time to mention that new plan we hatched was a verbal one. (Hence the initial misunderstanding about who would pay for what.) The actual contract wasn't revised from the original one. We were waiting for a full loan approval for Johnie and me since it had been so long since our first one when we began the process. And we needed the deed issue to be resolved.

After: Bedroom

Anything we would do to the house at this point would start costing more serious money. I wanted to paint all the rooms which would be several hundred dollars alone. I was at war with myself. If I spent the money and did the work and we didn't get the house, I would kick myself for being so stupid. But if I didn't go ahead and paint now when the house was empty and I had the time to do it, I would kick myself at closing for not doing that work when I had the chance.

I quizzed all my friends on whether or not to paint. One advised that I should sit with each decision... how would I feel about either decision years from now? And that helped me. If I didn't paint and we didn't get the house, it was inconsequential. If I didn't paint and we did get the house, I'd have a lot of added work and stress when we moved (something I try to avoid these days). If I painted and we got the house, then it would be really helpful and I could tell everyone how crazy we were to paint the house before it was even ours. And if I painted and we didn't get the house, I could tell everyone how crazy we were to paint a vacant house we didn't even own. I love a good story. And Johnie and I do crazy things like that. That's just who we are. We aren't really very normal. Decision made.

After: Dining Room

Toward the end of January, the painting was well underway. The contractor we had spoken with several weeks prior finally had time to do our projects. We scheduled to meet him at the house one Tuesday afternoon, the same day our housemates would be moving on to continue their missionary work.

Hiring the contractor meant some really serious money (or what I consider serious money). My nervousness only increased. We were going to be out of our rental house at the end of February and had a verbal agreement that we could move into the foreclosure house before closing, but still no actual revised contract.

I couldn't sleep that Monday night and spent quite a while talking with God about all my house worries. Everything felt so shaky, like it could crumble at any moment. So many times throughout the process I just wanted to throw my hands up, walk away from the foreclosure house and the dream of having friends as neighbors, contact our realtor and find a decent house like regular people. This was one of those times. I remember telling God that night, "we're going to be committed to paying this contractor tomorrow, and we don't even have a contract yet." In tears I fell asleep, resigned to continue on this unstable ground.

After: Living Room

The next morning we said an emotional goodbye to our friends, and as we were watching them pull out of the driveway Johnie's phone rang. It was our loan broker telling us all the loan and contract paperwork were ready to sign. The deed issue had been resolved a few days earlier. A couple hours before we met our contractor, we had the paper contract my heart had been hoping for.

Progress on the house went into high gear. We began going over to do projects on nights and weekends, or sometimes even while the contractor was there. One Saturday a friend came over and turned on the water for us and I held my breath and then thanked the Lord when all the pipes worked, minus a very minor, easily fixable drain leak at the bathtub.

And then, in early February, with the contractor finished and the paint almost complete, the appraiser came. Through the months of working on the house, I had fallen in love with it. It was good and solid. There were no roof leaks. The basement stayed dry. The hardwood floors were absolutely beautiful. I had the best dishwasher I've ever owned installed in the kitchen, as well as a stunning red sink with its own little story. The contractor added a gorgeous built-in to replace a non-functional window in the dining room. After all the work we did on the house, we uncovered no major issues.

After: Kitchen

I cleaned and prayed before the appraiser was set to arrive. I wanted to do everything I could to help the process. All along I had trusted the Lord that if we weren't supposed to get this house, then we would just get another one. But now I actually wanted this house.

The appraiser made me nervous. An appraiser caused a snafu when we bought our first home. We had already spent all our extra money fixing up this house, we didn't have anything to compensate for a low appraisal. By the time the appraiser arrived at the house, I was in tears from nervousness and sneaked out the back as he entered the front. Thankfully, Johnie was there and able to act like a sane person for the both of us. I told the Lord that if we weren't going to get this house, I wished He would have let us know before that day.

Before we even knew the results of the appraisal, Johnie received a job offer. It was work even more in line with what he loves than what he was already doing. And after a week of negotiations, we felt like it was doable for us. But, we learned, the new job would put us $250 above the annual income cap on the loan program we were using. If we didn't close before the job switch, we would need to switch loan programs, wait at least 30 days for a new income history and bring more money to the table.

After: Bathroom

As we were considering the job, the appraisal came in and was what we needed it to be. We still didn't have a firm closing date, but a good possibility that we could close in time for the new job not to affect things.

With fear of losing the house and fear of not being able to meet the (exciting) challenges at the new job pretty much the only things in our reasons to say no column, we decided not to let fear make our decision and Johnie accepted the new position. We continued on with our plans to move.

The rental house we were leaving was more than 3000 square feet. We needed to be out of it by February 28th, a Saturday. I had realized several weeks earlier that I could not move completely out of and then clean such a big house in one day. And we were already busy on Saturday the 21st. I'm sure my friends would have bailed me out and spent their whole Saturday getting everything wrapped up for me, but we decided to move all of our big things on Monday the 23rd. I planned to move all of our smaller things slowly, one car load at a time, the week before. It would cut down on boxes and packing and unpacking.

Except for that's the week we got the historic snowfall, followed by the historic cold.

We stayed snowed in our driveway until our landlord dug us out. And our friends got out and worked on our house for us those days. We had accumulated a list of projects that were to be fixed that week: New sink hoses to allow for running water in the kitchen, a new cord for the stove, the bathtub drain repair. We also learned in those final days before the move that what we thought was the thermostat wasn't. We didn't have one for the air conditioning. Only for the heat. (Thankfully, we didn't need it right away.) And also, the mailbox we thought was ours actually belonged to the neighbors.

48 hours before the move, the easy drain issue turned out to be way more complicated, we still needed to hook up the stove, and I couldn't even park in the driveway of that house because of all the snow. We weren't even sure if we'd be able to move into the house on Monday because of the snow. But we pressed on.

On Sunday, friends came over to clear the driveway and work on the drain.

Set to move the next morning, but still unsure how it would all unfold, I made another trip to Lowe's in tears Sunday evening. Still no working stove, still no way to take a shower.

"This is just how things like this go," my mom told me. She had agreed to stay the week with me to help me move. (Thank God she did.) "It's like when you read a book. We're at the part where everything is messed up. But in the end it all works out and everyone is happy."

"I didn't want to write a book, mom, I just wanted a story."

Thanks to several of our friends, the actual move went great. And, amazingly, the house felt like home almost instantly.

We still didn't have a working bathtub/shower, but we planned to travel back and forth from the rental house to finish packing and cleaning anyway. We would just take our showers there.
Our loan broker told us we could probably close on the house by the end of the week. And I had already started discussing our celebration -- for when we did close -- with our friends. We would all get to be at the closing table together. Us for the house, them for the land. I wanted to do remakes of all the crazy pictures from the first closing in Kansas. And then we were going to plant a tree or set a stone or start digging a footer -- something -- to signify this day. And then we were going to eat a delicious dinner together.

Throughout the week, my mom, my brother, my friends and I worked to get all the final items moved to the new house and get the old house cleaned out. Johnie was working faithfully each night after work to fix the bathtub drain. I was confident he would get it soon. My health was not doing great and I was needing to rest more than I preferred, but I was much healthier than I could have been and I had a lot of people helping. I felt hopeful.

On Thursday the bathtub drain still wasn't fixed. I was afraid I was going to have to take our friends up on their offer to shower at their house. And our broker called to tell us the final underwriter didn't approve our loan because of a fallen downspout noticed in one of the pictures. Any hopes of closing this week were dashed. If everything went smoothly with the repair and reappraisal, we could possibly expedite the closing to Monday, our broker said.

Johnie was pretty disappointed. His official two week notice went into effect on Monday. If the lending company required a third employment verification and if Human Resources disclosed his notice, we would be starting all over with a new loan program.

But Johnie fixed the downspout that afternoon, the appraiser sent in his paperwork, and we continued to work on getting settled into the new house and moved out of the old house. We had done everything we could do.

Friday morning I talked to my friend who was buying the land with us. I told her we may close on Monday, and that I was feeling okay at that moment. Some other friends had volunteered to get things wrapped up at the old house that day and Johnie had fixed the tub drain. I could take a shower at my new house! I got out of bed with a plan for the day and felt like I could actually accomplish it. My mom and I worked on some projects at the new house with plans to clean at the old house with friends after lunch.

But the broker called as we were eating lunch to tell us the paperwork had been approved and we could close that afternoon. If we (four, for the house and land) and the investor could get there. Johnie was ecstatic. I was nauseous. I had not planned to take a break from scrubbing floors to go close on a house. And the old house had to be cleaned because we were giving it back to the landlord the next day.

On top of that, neither of our friends were available at the same time.

I cried. I cried hard. So many things had not gone how I had imagined they would go with this whole process, and now my dream of a fun closing and celebration with our friends was also being shattered. I knew I was being a baby but it took me a few minutes to pull it together. The important thing was that we would all finally own this house and land we had worked and waited for.
We worked it out so we would filter in throughout the afternoon as we were available to each sign our portion of the documents.

I left the old house, not even completely sure if the investor would make it to sign his portion of the documents, and went to the new house to meet Johnie and change out of work clothes before heading to the title company.

I thought we would just sign our stuff and leave, but Johnie said he'd stay and wait for the investor to arrive. Our broker told us as soon as the investor signed, the house would definitely be ours. As we were waiting, I noticed I forgot to change my jeans and had brown stains on my knees from cleaning earlier. (Just another thing to add to the train wreck, I thought.)

The investor was late. And I was not feeling very good about what seemed like rushing through paperwork at the last minute on a Friday evening. This was a big deal for me and Johnie. I wasn't sure everyone else at the table understood just how invested we were in this house.

We tried to portray what we felt like by the time
 we made it to closing. This actually doesn't do it justice.

By the time all of the paperwork was wrapped up it was well into the evening. Though it wasn't said explicitly, we got the impression that the paperwork wouldn't actually be reviewed by the loan company until Monday morning. I left hoping we wouldn't get a bad news call the following week.

My friend met us back at our house when we finished up the closing. We hugged and cried and she saw the house -- with our stuff in it -- for the first time.

"We couldn't have planned it any better," she said. "Obviously, we didn't plan this."

What we did plan was that celebration we had wanted. And I told everyone, "legally, everything is done. But it won't be official until we celebrate."

Monday came and went with no bad news. And as the days passed, I began to finally settle into owning a home once more. I had dreamed for so many years about this, I had to keep reminding myself it was real each morning. It took us a while to switch from renting mentality (should we ask the landlord?) to owning mentality (we can do whatever we want with this wall!). But I am thankful to finally feel like I am putting down roots in a place I love surrounded by people I love.

30/30 Bucket List: A week without television or internet

Life and business are about human connection. And computers are about trying to kill you in a lake. To me the choice is easy.
-Michael Scott, Dunder Mifflin Manager, The Office

Initially, I was excited about the weeklong no internet/no TV challenge. Sometimes I feel tied down by the internet and online communication. Sometimes I feel completely burnt out on television. I thought this week would be one of freedom from technology, when I could explore my inner depths and get in tune with the world around me. I intentionally planned to do this challenge in the late fall so I could spend a lot of time outside admiring the unique beauty around us this time of year.

That’s not what really happened. 

As is often the case, things kept coming up to push out my technology fast. Finally I decided if I was going to do it during peak foliage season, I would have to do it this week even though it wasn’t necessarily ideal. 

I had originally planned to start on Sunday, but pushed it out a day when I babysat some sweet nieces who are easily entertained by shows on Netflix.

I tried to get the online banking and bill pay in order so I could not log in for a week. I tried to think ahead to all the activities I might do during the week and look up the information I thought I would need. When we went to bed Sunday night I made sure to set the timer on the TV to shut off before midnight.

My normal routine involves checking my email when I first wake up. Actually on nights that I can’t sleep I use my cell phone to check the time and I also check any emails that come through.

The little icon on the lock screen of my phone told me a dozen emails had arrived in my inbox overnight. I told myself these were most likely spam or junk. It became much more difficult when emails filtered in throughout the day to a folder reserved for friends and family.

That first day the hardest thing to manage was my fear of messing up. I was so afraid I’d fall into my normal internet and TV routine and not realize it until it was too late. I was so scared that as I sat chatting with a friend that day, she turned her laptop around at one point to show me a flier on her screen. My face became so stricken she thought I had fallen suddenly ill until I told her I couldn’t look at the webpage because of my challenge. We had a good laugh.

I was surprised (though my husband was not) at how long it took me to fall asleep that first night. I use the television show Friends to fall asleep. Sometimes I can’t make it through the opening credits. Usually I don’t even finish one show. I’ve developed a full repertoire of sleep techniques so I figured they would be my fall-backs this week. But even resorting to an Advil PM one night or becoming physically exhausted after a day of rock climbing didn’t help. On average it took two to three hours to fall asleep and I usually woke up throughout the night and struggled to fall back to sleep.

By the second day I was starting to feel like the challenge was a bust. It wasn’t extremely difficult, impactful or enlightening. It just was a thing I was doing for a week. I surmised that it was possible that I just wasn’t very attached to technology. (I am notorious for keeping my cell phone on silent and ignoring or not returning phone calls.)

I had wanted to spend the week outdoors, but my health and my schedule seemed to be preventing me from much hiking or exploring. I felt like Tuesday might be my only day to go out on my own. There were several trails and areas I had hoped to visit during this week and struggled to pick just one, but decided on Natural Bridge. I felt comfortable (though this is not advisable) going there by myself. It is my favorite place on earth AND I hadn’t visited yet this year. To go a full calendar year without visiting Natural Bridge is a travesty I hope I never endure.

As a side note, I saw a lady who had taken the sky lift up being helped by two men accompanying her. She was obviously elderly and in poor physical condition. But she was walking slowly, with help, to see the bridge. Later in the hike, I stopped to take pictures for an elderly couple visiting from California who were attempting a full trail even though the lady had knee replacement surgery. Both of those women determined, despite their physical ailments, to explore this place gave me hope and encouragement for my own life. Despite being ill, you just always keep climbing.

On day three, when my phone icons told me I had more than 100 emails waiting, Johnie mentioned he could turn data completely off and remove the icons altogether. I allowed him to do this and worried I might be even more tempted to check my email not knowing anything at all about how many messages I might be receiving. Not seeing the icons actually ended up helping though, because I just kept telling myself that I probably wasn’t getting any important emails anyway.

I also had a moment of clarity that day that seemed to add some reason to the whole challenge. I don’t want to talk too much about my health. I don’t want everyone to think “Oh it’s just Amy talking about being sick again.” But my life has been changed and as I’m trying to process those changes things come up and out that I feel compelled to write about and share with others. And one thing I have been recently struggling with is embracing (or more accurately, discovering) my new identity. I am not capable of everything I used to be capable of. And I am still adjusting to that.

Part of that adjustment is learning to find my worth and value outside of what I am able to do. I have been trying to identify ways I am inappropriately measuring my worth and to seek out healthy and correct gauges. (I may blog about this in the future.)

I realized that I expect or hope for some of my value or worth to come from online messages. I have received some great emails over the years. Johnie and I fell in love with each other through emails and instant messages. I think it is a powerful and useful tool we can use for good. But when I don’t get the response I was hoping for that should have no impact on my value or my worth. Sometimes I have let that be the case. The fact that someone didn’t reply to my email must mean they don’t love me. Or worse, that there is something wrong with me that makes me unlovable or less lovable. That is not correct. Even if my inbox is empty I am still worthwhile. My value is not tied to emails. Or communication from people. Even when we don’t hear what we need to hear (in any form) that doesn’t mean we aren't worth it.

 

It wasn’t until day four that I began missing television. My brain was fried that day and television is how I zone out. I felt no outlet to shut everything (internally) off completely. I ended up finding a mindless non-internet-using game I had downloaded on my phone a long time ago and hadn’t played in over a year. It was the closest thing I could find to fill the TV void.

On day five Johnie walked in on me crying and this was the conversation:

Johnie: What’s wrong, Amy?

Me: I’m just thinking about things. (It was understood these things were unrelated to the challenge.)

Johnie: When is your challenge over?

Me: Monday. Do you think I need the internet?

Johnie: I was just asking.

I haven’t decided yet if the diversion from thoughts provided by the internet and television is a good thing or a bad thing. On one hand, I feel like we can avoid and numb our thoughts to an unhealthy level, completely ignoring things that need to be dealt with. On the other hand, it takes time to work through things and sometimes we need a break. I think it is hard to find the balance of when to engage in thoughts and when to rest from them. I fear that I sometimes try to tamp them down or ignore them a little too much.

By day six I was feeling more adjusted to being offline. There were many things that popped up throughout the week – weather forecasts, recipes, things people wanted to show me online – that were unexpected moments when I would have automatically turned to the internet. I felt like I had worked through most of the surprises. And we had a day of rock climbing planned. I figured it would be an easy day for the challenge.

 

But once more I was surprised as all my friends went home that night and uploaded pictures online. Pictures everyone else could look at and talk about, but I could not see. It was tough to watch my husband look through online pictures without peaking over his shoulder. But I refrained.

The final day of the challenge involved more averting of eyes and reminders I’d see everything the following day as friends continued to share and discuss things from the day before.

I was sure that last day would be easy. But, I must admit, by this point I was done learning and growing. I’m embarrassed to say I began counting down the hours to midnight and seriously questioned ending the challenge a few hours early. (Really, what would be the difference between checking my email at 8 pm versus 8 am?)

Also, Johnie and I decided to go out for dinner and were sat in an area surrounded by televisions. Sports were on and I wasn't interested at all, but it felt like cheating. With a red face, I asked to be seated in an area without televisions and thankfully the server graciously moved us.

As I’ve reflected on some of the positive aspects of this challenge, I do feel like I may try to remain more disconnected from online media and communication. I think that instead of being always online – always connected via a smart phone with messages streaming in, I may delegate a couple times each day as online time, or I may delegate one day a week as an internet-free day.

I also feel stronger to fast from other things in my life. I have always struggled with fasting in general (and especially fasting from food), but I feel like I can look back on this time and think about how I calmly went through a week without email or television.

I was texting the friend who issued this challenge to me and I admitted to her it has taken some discipline not to check my email – that has been the hardest thing. She reminded me of a time in college when our internet went down unexpectedly and she walked into our apartment to find me hunched over my desk weeping in the middle of the night. Thinking something tragic had happened, she rushed to my side and asked. Through heaving sobs I said, “I just want to check my email.”

The fact that I can now go an entire week without email and without a meltdown shows growth, right?

Having lupus, Part 6: Exhaustion

It's just a constant battle: Me against my body. My passions and my dreams and what I want to do with my life, against what I'm physically able to do.
-Austin Carlile

Note: This was a free-write I did back in the winter, obviously born of frustration. (I hope you laugh at that word later.)  Sometimes the sound of clacking keys is therapeutic, no matter the result.  I thought it would be appropriate for this series of posts to share now these uncensored feelings I had "in the moment."

It is one of those days.  I am exhausted.  I am white-knuckling the day with the goal of remaining upright until it is close to an acceptable bed time.

This makes no sense to me.  I slept a full eight hours last night.  A full eight hours.  Shouldn't my energy level coincide with my sleeping pattern?  I have been tired, exhausted before.  I always thought it was sleep.  I have felt better on four hours than I feel today.

I guess this is lupus?  Whatever it is, it is so frustratingly frustrating.  Yes, that's how frustrating it is.  Except more.  I could come up with much better words than that, but I am exhausted.  And frustratingly frustrating is what I can muster.  Frustrating isn't strong enough and I want to say frustratingly some other word that I just can't pull from my fog-filled brain.  So frustratingly frustrating it is.  If I fight any harder for another word my computer may end up in more than one piece on the other side of the room.  Or house.  Or yard.  It's hard to know for sure.

I feel confined by invisible chains.  I feel compelled to write but I am consumed by a magnetic pull toward a vegetative state.  And fighting it seems futile.

So this is what I can write.  I tried.  All.  Day.  Long.  To string together coherent thoughts on beauty and makeup and DermaBlend Camo Confessions and Dove Real Beauty sketches.  But there was not enough energy when every word was a fight.  To insert links and look up data and embed videos is too much work when balancing my head on top of my shoulders feels like a chore.  With the sun gone down, I must surrender those thoughts to another day.

Nothing to show for this one.

If I am to write today then this is all I can seem to explain.  And even this not very well.

To feel this way for a day is not so bad.  But when this exhaustion stretches out and deepens, when the body is completely drained, it begins to drain the spirit too.  This is where I learn patience.  As I wait for energy to return.  I wait and I wait and that is all I can do.

It has been with me too long this time, exhaustion.  I'm ready for a break.  Can I sit it down for a while, I ask.  What if I agree to come back and pick it up later?  Just a break if full-fledged relief isn't possible.  What good is this anyway?  Really?  Am I not better when I am better?

And still I just wait.

Relief will come.  It always does.  I'm hoping for tomorrow.  And I hope that tomorrow I'm not hoping for the next day.

Note: Infuriating.  That was the word.

---

This post is part of a series on how lupus has affected me.

Click on the links below to read more:

Part 1: Introduction, The horrific mystery disease

Part 2: The bad times

Part 3: How lupus made me a better wife

Part 4: A practice of patience

Part 5: More on the pit

Part 7: Saying no

My diagnosis

My herbalist and the treatment option I am choosing right now

My recent lifestyle changes

To learn more about lupus, you may visit the Lupus Foundation of America.

Having lupus, Part 4: A practice of patience

How poor are they who have not patience.  What wound did ever heal but by degrees.
-William Shakespeare


When I was five years old my dad bought me a guitar.  Music is in my genes and I still remember the excitement I felt when he put it in my hands.  I idolized him and this was one more step in my quest to be just like him.  He showed me where to put my fingers.  How to strum.  I tried it, but it didn't sound the same as when he did it.  I couldn't even make it sound like a song.

Less than an hour after I picked up the guitar, I set it back down.  For good.

My mom always said that if I didn't learn something in five minutes I never would.  I didn't have the patience.  It was a trait that followed me into adulthood.

Until the lupus diagnosis.

I couldn't set lupus down like I had the guitar.  I was sick and I stayed sick and I had to learn to deal with it.  Getting frustrated didn't help.  Ignoring symptoms and stopping treatments only made things worse.  I learned the first year the symptoms piled on that I would have to stick with doctors and stick with treatments for weeks and months to see any result at all.  And even the slightest bobble (or no bobble at all) in routine, could send things downward again.

When I got sick, I had no choice but to wait it out.  Before I even knew I had it, lupus was teaching me to wait.

I had to wait just for the diagnosis.  And it still felt like too soon to hear that news.

I had to wait for relief from symptoms.  I was sick for months, and for some of those months I just kept getting sicker.  No explanation, no answers.  I began to wonder if things would ever get any better, if I would ever get any help.  Then I did.  Sweet relief came finally.

But it didn't stay.  And I had to wait again.

I have heard lupus described in different ways, like by spoons.  For me, it feels like falling in a hole.  Some days, I'm on solid ground.  These are the days when I feel great. I feel normal.  I feel like I did pre-lupus.  Some days, the ground might be a little shaky, a little muddy, a little slippery.  I can still function like normal (or pretty close to it), but it takes more effort.  I feel like I have to step lightly, proceed cautiously... lest I fall into the hole.  Because when I get really sick, that's what it feels like.  Like I've fallen in a big, deep pit.

Before I knew the hole was called lupus, before I knew there was nothing I did to get into the hole and nothing I could do to get out of it, I would fight and scratch and try to claw my way back up.  I would wear myself out down in the hole and have nothing to show for it but bloody knuckles and muddy jeans.  And when I finally did get lifted out, I was too tired to even enjoy being back on solid ground.

Now I know when I fall in the lupus pit I just have to wait to be lifted out again.  I know I might as well spend as much time sleeping as I can down in the hole so I'll have plenty of energy on that day when I wake up back on the ground again.

Well, I say that like it's a rule.  Sometimes -- even now -- when I fall in the pit I pretend like I'm not in it at all and just go about living my life like I would on the shaky ground.  (I like to call this digging the hole deeper.  It has much the same results as trying to claw my way out.)

The point is, I realized that as difficult as it is for me to wait, it's the most productive thing I can do down in that pit.  And I hate --H-A-T-E HATE -- being down there, so I'll do anything I can to get out as fast as possible.  Even if it's something as grueling and horrific as waiting.

One side effect of waiting down in the lupus pit is achieving a higher tolerance level for non-lupus waiting.  Once you've waited and waited... AND WAITED... to feel like getting out of bed then waiting for a stop light, or a vacation, or dinner, or an answer (from people or from prayer) doesn't seem nearly as taxing.

I've learned that staying calm and waiting on whatever thing isn't happening as quickly as I would like it to is the best thing for my disease.  I have also discovered something else: It turns out to be the best thing for my life, too.

I look back on all those years that I got worked up over this little thing or that little thing and realize now that it wasn't worth it.  Even when people told me then that it wasn't worth it, I didn't believe them.  I believe them now.

This goes against every natural tendency I possess: To wait, to go with the flow, to remain calm when things aren't working out.  It has taken work to achieve a sense of calm, of peacefulness in the midst of chaos and longing.  And sometimes I still fail.  Sometimes I still fail miserably.

I am ashamed to say that pre-lupus I had resigned myself to impatience.  Patience was a virtue I thought I would never have.  It still isn't at the virtue level.  But I am making progress.

It just took something as stubborn and unrelenting as lupus to finally teach me.  I went toe-to-toe with my illness for months.  It won.  Like, major smackdown, who's-your-daddy, won.

So now I am learning to be more respectful of my new limitations.  And for all the things that it feels like lupus has taken away from me, I am thankful for at least this one thing it has given me.

I hope that one day the lupus goes, but I'll be happy to keep this new-found patience as a souvenir.

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This post is part of a series on how lupus has affected me.

Click on the links below to read more:

Part 1: Introduction, The horrific mystery disease

Part 2: The bad times

Part 3: How lupus made me a better wife

Part 5: More on the pit

Part 6: Exhaustion

Part 7: Saying no

My diagnosis

My herbalist and the treatment option I am choosing right now

My recent lifestyle changes

To learn more about lupus, you may visit the Lupus Foundation of America.