What about the husband?

Goodnight. I love you.
-Johnie

I have always thought Johnie would be a great dad. It is so sweet to see him play with little ones. This was never reason enough for me to actually get pregnant though. Because, you know, I'd have to actually grow a full size baby inside my body, get it out somehow (still haven't figured out how that is supposed to work) and then be his/her mom for the rest of my life. I was content just to watch him with our nieces and nephews.

But if I'm getting this surprise, this is a part I look forward to. Watching Johnie in action.

I just had to laugh the evening I told him our news. I think I could have asked him for anything that night and he would have given it to me happily. No complaints. (That has since died down.) He held my hand as we watched TV that night. He went out to pick our dinner up. And brought home flowers. He volunteered to do several little chores I would normally do.

And if any of you know Johnie and his track record of trying to say sweet things and failing miserably...One night before bed I was telling him how I just couldn't get over how quickly everyone just got excited about this baby and already loved him/her. They already started making plans for the baby.

I just couldn't get there. "I just don't know," I said. "I mean, am I just going to miscarry? Am I even really pregnant? Is the baby going to come early or late? Or be sick or healthy? I just don't know anything about this baby."

"We know this baby has a really great mother," he said.

Did those words just come out of the mouth of the man who said we would never work when he was trying to convince me to date him? Yes, they did. More than one miracle was conspiring around me.

When people asked us how we were feeling I said, "nervous and scared." He said, "more excited than I thought I would be."

I didn't want to bother him with added stress at the beginning of his new job so I recruited my mom to go to my baby appointments with me. Only he already planned to go with me himself. And talked with his boss to work out a schedule that would allow him to work around my appointments.

One night we were running errands and it was a couple hours past dinner and I was very hungry. I decided a chicken breast (two, actually) from Bojangles would do it. But the lady at the drive-thru informed us it would take 12 minutes. I didn't feel like I had 12 minutes, so I made him take me to McDonald's. But the line there was around the building and I wanted chicken anyway. So I screamed. I've never done that before in my life. (I have screamed before... just not over having to wait a few minutes for food.)

He took me back to Bojangles and we waited for the chicken. A couple bites in I felt settled down and embarrassed for acting so horribly. "I'm really sorry," I said. "I don't know what came over me. There's no excuse for that."

"Ummm... you're growing a person. You need to eat. I think it's completely understandable. I can't even imagine how I would act." (At which point I hoped I really was pregnant... Otherwise my behavior would have been even more inexcusable.)

He's given me the "Amy, you're growing a person." pass plenty of times since we learned the news.

There are things he does stress out about. In the first 16 hours after the positive pregnancy test, he wanted to buy all the nursery furniture, pick out a name and make a decision about vaccinations.

Randomly, a couple weeks ago, he felt it imperative to change out several of our door knobs so they would be safer for the baby... when s/he starts walking. I asked if he felt like it was something he needed to do that day. He said yes.

And, little things will pop up every now and then that bring him pause or that put him in a bad mood. But mostly, he's just really sweet.

He began reading to the baby that first night. And each night before we go to sleep he kisses my belly and says, "goodnight, I love you." (He started that on his own.) Now that I think of it, he was the first person to ever tell the baby "I love you." Pretty sweet.

One night I asked him a question I wasn't even sure I wanted to know the answer to: "If you could go back, would you change things?" I had no idea what he would say. And I didn't even know what I wanted to hear. But he gave the most perfect answer I could think of given our surprise with this baby and my deep-seated quality time love language.

"That's a trick question... I really want to have longer with just you, but I already love this baby."

With all I am nervous about with this little one, the father isn't one. (I love you, Johnie! And thanks for being awesome!)

Two little lines

A grand adventure is about to begin.
-Winnie the Pooh

Within hours of learning I was pregnant I felt compelled to write. I decided quickly to journal. The decision to blog came more slowly. I feel like there are more than enough motherhood/pregnancy blogs already, and they all do a much better job than I could ever do. But what would it hurt to share my experiences too? It's already been proven people don't have to read what I write. So here goes...

Upfront you should know I did not want this to happen. My husband and I were scared away from having children almost eight years ago when I thought I might be pregnant and later learned that I wasn't. We never really recovered from the shock of sudden responsibility we felt as we waited for a negative pregnancy test.

Ironically, it was that experience that sealed the deal for me quitting hormonal birth control. I had health complications with the three different types I tried (migraines, moodiness, weight gain, etc), but the fear that it could potentially harm my unborn child (unwarranted or not) was enough for me to stop it for good.

Within a few months we settled on natural family planning. I read several books. I still remember reading a warning that if we weren't going to be serious about NFP, then we shouldn't claim to practice it. The author lamented that NFP had such a low success rate because so many people did it incorrectly or took chances they weren't supposed to take. Also, most NFP "failures" happen in the first year.

I took the responsibility seriously and was diligent that first year. I followed every single rule. Measured and charted every indicator every day. To be fair to NFP we have not strictly followed the rules since then. It's just that some of the fertility indicators are tedious to measure, and if you track everything month after month you begin to learn about your body. (For example, my temperature swings happen later than for most women. I stopped taking my daily temperature years ago because it just wasn't as reliable an indicator for me as other things.)

 And there have been a handful of times when I have been wrong. I thought the indicators were or were not there only to learn after it was too late that I had misread my signals. That's not what happened this time. We had very good reasons to believe my fertile window had opened AND closed. And no other indication to the contrary. Still, in the hours following the positive pregnancy test I felt like a failure. How could I have let this happen?

I have always been paranoid about a surprise pregnancy and have taken dozens of pregnancy tests over the years. It has been a common refrain for me to link some symptom or issue with possible pregnancy. This particular time it was back pain.

My mom had back pain with both her pregnancies very early. When my back began hurting, I thought I might be experiencing the same thing. I lay in bed at 3 am the day of my missed period and whispered to my husband, "I just can't stop worrying about if I'm pregnant."

Eight years is a long time to be patient. Having heard it all before he replied simply, "Amy, you're not pregnant." And he rolled over and went to sleep. I nursed some hurt feelings and planned to talk to him the next evening about being more respectful to my concerns.

The next day I took the test. For the first time in my life the first little pink line began to appear. I blinked my eyes several times. It was still there. Two lines? Two lines! TWO lines?!?!?! "Dear God, no. Please no. I'm not ready. It's not time," I prayed.

I took a picture. Both lines showed up in the picture. I held it up to the light. They were still there. My heart started beating out of my chest and my breathing sped up. My skin flushed. Was I going to faint?

I talked myself through until my heart rate and breathing slowed. "It's okay. It's going to be okay. It's going to be okay. Everything will be alright."

My next thought was having to tell people. It was close to April Fool's Day. Every previous time I thought I might be pregnant around March, I always thought an April 1st announcement would be fun. So that might work out. I began thinking of how I would tell my friends. They would probably ask me how I am feeling. I actually thought I was handling it pretty well. I mean, I hadn't cried or anything. I panicked at first, but that was just for a few seconds really. How was I feeling?

I looked at myself in the mirror and said to myself, "I'm terrified." All composure was lost as I melted into sobs. I could hear my husband in the next room in a conference call meeting. On his first day of work at his new job. I couldn't really tell him until after his work day was finished. And I didn't want him to hear me, rush out and learn about our pregnancy with me a blubbering heap.

I tried to pull myself together and took several deep breaths. How do teenagers do this? How in the world do single moms handle this? I am old and married and middle class and love kids and I feel completely unprepared and unqualified. Downright unable. (Every mom in the world gained even more respect from me that day.)

Johnie had an hour before he was finished with work. How would I tell him? I really didn't want him to learn about his first child through heaving sobs. I thought about friends who had bought onesies or dad-to-be items and given them to their husbands. I didn't really have time for that. "Oh, hey... we're pregnant" seemed lackluster. What could I do?

I settled on telling him I got him a surprise for his first day at his new job. That was about the best I could come up with. I willed myself to hold it together, but his meeting ran long. And in the minutes between when he was supposed to get off work and when he did get off work I lost it again. And pulled it together again.

He didn't act like he suspected anything when he saw my face. "So, I got you a surprise for your first day of work."

"Oh, really? You didn't have to do that. What is it?"

This is harder than I thought it would be. I swallowed and could only whisper, "I'm pregnant."

His eyes got wide. "Really?!?"

I shrugged. "That's what the test said."

A tiny smile tugged his lips upward. But only for a few seconds. Serious, he asked, "how are you feeling?"

"How are you feeling?"

We were hugging. I couldn't see his face. What is he going to say? What is he going to do? How is he going to react? What is this going to mean for us? The seconds ticked slowly by. Was he waiting on me to answer first? I wanted him to answer first.

Finally he spoke. "I'm just really worried about how you are feeling."

"I'm scared."

We began discussing how and when to tell people. My best friend had always made me one of the first people she told (after her husband) about her pregnancies. Johnie agreed we should do the same for her. So she was our first call. We tried to call my mom but she wasn't available. We called Johnie's parents and siblings and grandparents.

We would be seeing our church family the following night. We live in a very tight knit open community. We strive to share life like a real, authentic family. This was rocking my world. I couldn't see my friends and not tell them. If it was even possible, it would have felt dishonest. But the thought of Johnie announcing our pregnancy and then everyone looking at me was overwhelming. I never like a lot of eyes on me and especially in a situation like this. I told him I just couldn't handle it.

He suggested I stay home and he announce it without me. That'd be a great way to have everyone at my house -- sick with worry -- in less than ten minutes. We agreed to call the friends we would see the next evening before we were to be with them. That way things might be settled down a little before I actually had to have anyone looking at me.

That was until we talked to my mom. She was ecstatic. Beyond ecstatic. She kept thanking the Lord over and over again. And she told us this was the best moment of her life so far. My husband tried to clarify -- with both of her children also on the phone -- and she said that her own births were the most amazing moments of her life when they happened. Emphatically, this was the best yet, she said, and that it would only get better when the baby arrived.

I knew my mom would be excited. But I had no idea her reaction would be so over the top. It actually helped me feel a lot better. I mean, everyone we told had sweet reactions. But my mom's response was priceless. I was already feeling a little guilty that my initial reaction was void of happiness and Johnie's lacked much enthusiasm. At least this baby had others who responded in such pure joy.

She also had plans with close friends in the coming days and was unsure how she could not tell them. Johnie received an email that night from a dear friend and we almost had to call him and his wife to tell them the news because Johnie didn't know how he could hide such a huge life event. (That friend later said he knew by Johnie's short reply that something was up.)

So, Johnie and I decided that night that mom should be the one to make the announcement to our church family. We weren't sure how she would do it, but we did know it would be great. And almost certainly better than any way Johnie or I could manage to tell anyone in the next 24 hours.

In true mom fashion, she didn't disappoint. Neither did our friends.

Having lupus, Part 3: How lupus made me a better wife

I've got your back, Rose.
-Johnie







I have commitment issues.

I had a moment of panic on my wedding day.  I was afraid maybe Johnie wasn't the one.  I was afraid I didn't know him well enough.  I was afraid he was just putting on a show, and would get me to Kansas and then make my life miserable.

 The only way I could make it down the aisle that day was to repeat these words in my mind: "You can get a divorce.  It's okay.  If it doesn't work out, you can leave.  You don't have to stay."

Not the most romantic or reassuring thing for my husband to know.

I mean, I believed in the sanctity of marriage in theory.  But when I was being completely honest, I told Johnie I didn't have enough confidence in myself to be sure I'd stick around if things got bad.

When things get hard or uncomfortable, I look for a way out.  Why would I be any different in my marriage?  And it doesn't help matters that I tend to be a loner and independent to a fault.

Johnie clearly took note of my warnings in one of his classic attempts to be romantic a few years after our vows: "Amy, I really want to make you happy.  Not only because I love you, but because I really don't want to have to find another wife."

At least he realized I was serious.

Of course I wasn't wanting to stay in a marriage that involved abuse or cheating or a husband who just didn't respect or value me appropriately.  But I also wondered whether or not I'd be able to stick by Johnie if marriage became hard in a way that wasn't necessarily his fault.  Like if he got sick or injured or lost his job.

I just saw wives who labored through husbands' paralysis, or terminal illness, or dementia.  I wondered if I would have their strength.  I was afraid I wouldn't.

Johnie has made my life better in so many ways.  I'll be honest: That's a big reason why I chose to marry, and him specifically.  (It didn't hurt that he is also H.O.T.)

What if he was no longer able to provide financially?  What if I had to care for all his needs around the clock: feed him, bathe him, change him?  What if we could no longer travel together, or go out together, or laugh together?  What if he lost his personality or his memory?  What if marriage became more of a burden than a blessing, would I actually stay?  I didn't know.

But for all of my doubts, Johnie never had any.  As reluctant as I was to pledge 'til death do us part, Johnie was sure it was me and only me, no matter what.  His loyalty and devotion was deep and sure from even before he put that ring on my finger.

And in all my worries about him one day becoming a burden to me, I never really gave much thought to me becoming a burden to him. 

That changed when I faced lupus.

I was no longer the wife he married.  My healthcare cost more, while my earning potential decreased.  The likelihood that I would have more physical daily needs he would have to meet skyrocketed, while my ability to keep up my part of our household chores plummeted.  If I can get pregnant with his child (because we have never "tried" we aren't sure whether or not lupus has affected my fertility), the pregnancy would automatically be high risk.  And any children we have through biology or foster care or adoption would require more care from him on my unpredictable down days.  My weight fluctuates uncontrollably.  My hair falls out and breaks off.  My face has big, ugly spots on it 90% of the time.  There are even some days I don't feel like cracking a joke.

And who knows what the future holds for him and me.

Lupus made me less of a partner and more of a liability.

But none of that mattered to Johnie.  I apologized for all the things he was losing with my diagnosis.  He didn't accept it because he said it wasn't needed.  And as we laid in bed that night after we got the news, he held me and wiped away my tears and reassured me.

"You know I'm here for you.  I'll do whatever I can for you to help.  Just let me know...  Whatever it takes.  I've got your back, Rose."

It was a weight lifted off my shoulders and I was so thankful.  He was so fully devoted to me even when I wasn't to him.  And now even when I didn't bring nearly as much to the table, his commitment remained in a way I wasn't sure mine would have.

That changed me.

How much harder my diagnosis would have been if Johnie had treated our marriage the way I always had.

I vowed then to give myself to Johnie with reckless abandon.  For my devotion to him to match his to me: unwavering and never-ending.  No matter what.

I confessed to Johnie one night shortly after that I hadn't been the wife to him I should have been.  That it was wrong of me to withhold my full devotion.  And I pledged to him that -- though nearly seven years late -- I was completely committed to him in a way I should have been from the beginning.

I worried it would be too little, too late.  But I don't think it was.

I read somewhere that more than half of all marriages end less than five years after a lupus diagnosis.  That statistic frightened me at first, but I don't worry about it anymore.

I don't have as much to offer Johnie as I once did, but I offer it fully and freely.  And in that way, lupus has made our marriage even stronger, even better, than it already was.


---

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 4: A practice of patience

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.

Quitting and Moving

Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle and end.  Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next.  Delicious ambiguity.
-Gilda Radner

Three years ago I was desperately homesick and an opportunity opened up for Johnie and me to move back to Kentucky.  It would mean leaving his family, leaving our Kansas friends and Johnie leaving a comfortable, fulfilling, rewarding, enjoyable job.

Thinking about the sacrifice involved made me physically ill.  I was afraid it would be a decision we would end up regretting. 

But Johnie assured me he had weighed the options and was confident we should move despite those we would be leaving, despite the career and financial risks involved.

I wasn't certain we made the right decision until I was blessed with the privilege of living close to my grandfather in his final days.  I had two years of memories we couldn't have made from Kansas.  And I had sweet, sweet final moments that were so much easier because we lived nearby. 

I know a lot of people have gone through a lot more than I have, but it has been a hard year.  Struggling with sickness for months and months before getting any meaningful relief.  Then learning that sickness is not something to tackle or beat, but to manage and adjust to.  Then saying goodbye to the man who had always provided shelter through life's storms. 

I'm still adjusting but I'm already changed.

I have trouble accepting the lupus diagnosis.  (To put it mildly.)  I would prefer to pretend that it doesn't actually exist.  But it won't be ignored.

A few years ago, I gave no thought to the repercussions of my lifestyle on my body.  I did work that I loved and spent time with people I loved.  My days were filled with productivity and laughter and diversions -- morning to night.  I would push through illness, push through tiredness, push through whatever.

But lupus isn't something that can be pushed through.  I tried.  It limits my body, my mind and my time in inescapable ways.

Though it has chained me down, it has also freed me.  While waiting in bed to feel better, life's priorities come more clearly into focus.  Time and energy are worth more.  A good day is more meaningful.  After weeks and weeks of feeling sick, waking up one blessed random Wednesday morning and feeling like my "old self" again is a gift. 

I do not believe I can accurately convey the joy I feel on those days when my health is fully restored.  I feel like running and jumping.  (I refrain from doing either.)  I have never done a cartwheel or a backflip in my life, but the way I feel must be the way one feels seconds before leaping and tumbling in the air.  Those who have suffered from prolonged illness without any relief could probably imagine how wonderful it would feel to be completely healthy again.

But if it is a random Wednesday, I am scheduled to go to work.  And I've already used up all my time off for being sick (and taking a couple trips).  And I feel like I have missed my chance to hike, to savor every delicious bite of food, to be fully present, fully myself with family and friends.  Sometimes the good days come on the weekend.  Sometimes they don't.

And when those days are at a premium, it is hard to spend them in a lackluster way.   

I love my job.  I can't explain that either.  It doesn't even make sense to me, so I can't make it make sense to other people.  I just love it.  It is rewarding to me on many different levels.  I am one of the few people in the world who loves speech writing above any other vocation and who also has the blessing to write speeches in exchange for money. 

In a better world, I would have enough energy to be the wife, the daughter, the sister, the aunt, the friend, the person I want to be and the writer I want to be at work.  Maybe in another time or in another way I will be able to someday.  I hope that is the case.  But for now, I feel like I must choose.  I feel like on most days I only have a shot at one.

And I have learned well that people, loved ones, relationships are more important than any job could ever be.  I do not want to choose, but if I must I choose quality time with my husband, my family, my friends.  It is a stupid career move, but I have decided to do it anyway.  I have also learned well that stupid career moves sometimes turn out wonderfully.

I am blessed to have the option of leaving a job with no other one lined up.  And Johnie and I are also blessed to have the flexibility to move even closer to friends and family I hope to spend many good days with. 

And so...

With a bundle of emotions, I am quitting my job at the end of this month and we are moving to London, KY, where I plan to sleep more and play more.  And maybe someday write professionally again.

We'll see what the future holds.