Fears

July 16, 2012

Steve being brave

Most of the day on July 16 was spent updating family. Steve spent a lot of time on the phone talking about me and the baby. I'm still in the hospital.  I'm still pregnant. I'm in trouble if I have this baby, though. My water broke. No, they don't induce for water breaking at this stage -- it's not necessarily the end, it just doesn't look good.

Lots and lots of people prayed. And asked their friends to pray. I think I had more people praying for me that day and the next than I even know. 

Steve had remembered the camera this time.  He spent most of the day with me.  He didn't want to leave my side.

Magnesium Sulfate continued dripping through my veins.

That afternoon I had another steroid shot to help the baby's lungs develop.

Twenty-four hours after this, they said, and his lungs will be like that of a baby a week or two longer in the womb.  That made his lungs like the lungs of a twenty-four or twenty-five week old baby. And those babies -- those babies sometimes lived.

I went online and read some preemie baby stories -- stories of twenty three weekers. But I only read two, because (as I mentioned before) both the babies died.

Flushed cheeks from mag sulfate

I learned what to be afraid of. Bowel stuff. One of the babies died at eight days old after food had been introduced.  Their belly couldn't process it. The other baby's death was at two or three months old, and came out of the blue. I was reading the blog, I was inspired by the baby's daily growth, I was feeling like maybe there was some hope -- and then the post changed to a bereavement post and a picture of the baby in a funeral gown. I don't know what happened.

Lungs -- if he's born now his lungs will be very bad. But lungs grow. The gut -- what if his gut didn't work?  If his gut doesn't work, he can't live. I might lose him after they started feeds. 

This was, looking back, an awfully oversimplified view of neonatology. It's more complex that that. But for me, at that moment, I worried about digestion.  Lungs, too, yes. And brain. But digestion most of all. Because of that baby in the blog who didn't make it a month.

But for now, we're buying him more time.  Every hour was important.  Every hour came with a few contractions. But he was staying in.

"No no no, baby, don't come out. That's a no-no" -- my girls words echoed in my head.

The day things went wrong - again

This week is a big one in the life of my "a year ago today" scheme, so I'm starting early.

Today we look at "about a year ago" (minus two days).

July 15, 2012 It started out quiet.  Steve and the girls went to church. I stayed home. I spent some time on a bulletin board site for other preemie moms.  I'm twenty three weeks and one day pregnant, I thought. "I think in a week I'll start an online registry" I wrote, "to celebrate reaching viability."

And then I went to a baby website and started looking at how to register. I didn't actually register, but I thought about getting set up for it.

Steve came home and started making lunch.  Some friends were doing this music concert thing in the community a few days later and had asked if our girls wanted to make a prayer box for it, for people to put prayer requests in or something.  Steve had said "sure," and so while he made dinner, I talked the girls through the best plan for making the prayer box.  They brought the shoe box into my bed rest room and we talked about how they'd decorate it.  We sized up paper on the box. Then they left to find some scissors and tape and markers and glue, and I went to the restroom.

[WARNING: FROM HERE ON OUT, I go into medical details. You may want to skip the next few days.]

I saw blood.  Not much.  Just a tiny bit, a drop or two really.

I called my MFM (maternal fetal medicine) doctor. I figured it probably wasn't a big deal. It was just a spot. And I'd be seeing them on Tuesday anyway. My OBGYN said that, since I'd be seeing the MFM doctor that week, she'd wait a week to see me. She didn't want me going out too much. But she did ask me to check with them about shots when I went in. I'd be almost viable by Tuesday, so it might be about time to start some sort of shots to help speed lung development and/or stop labor. I'm not really sure which any more. I never actually saw the MFM doctors' outpatient clinic.

The nurse at the office asked me to come in.  Steve grabbed my bags -- we realized by now that packing bags before going to labor & delivery was a good idea. No more going in with just a kindle. Snacks and comfy clothes were a must, as was a laptop.  As Steve collected things, I lay in bed. Contractions had started. Just two, but there had been none before.  I looked at the hippo blackboard.  SE weeks, I day. Or, to translate Ella's five year old backwards writing, 23 weeks, 1 day. (By the estimated due date that had been in my file, 22 weeks and 6 days.  I'm glad I had had them change that date again.) Too soon. Not yet. No, not yet.

We called our friends Dave and Deb and asked them if the girls could hang out with them for the afternoon. They agreed. They had just that morning asked Steve to let them know when they could take a turn at watching our girls.  And they were mostly on the way to the hospital, so they seemed the best bet.  We didn't really have time to think hard about this one.

We headed out. By this time the contractions had started again. They were right to have me come in.

We called Steve's mom. She was packing up to come back from her mother's house anyway.  We let her know we were going back in.

I expected to go back up to the MFM floor of the hospital. But they kept me in labor and delivery. They got a shot in me by 3 pm to help the baby's lungs develop.  They put me on IV liquids and then started pushing magnesium sulfide through my veins. It burns. And since it goes through the veins, pretty soon my whole body burned, but it is supposed to stop contractions.

The first hour or so of that treatment was the worst. I was hot, I was miserable, and my heart was racing. I couldn't breathe. They told me I was breathing fine, my pulse ox read something  just under 100%. But I felt like the world was collapsing in on me, so they gave me oxygen. It helped. I now understand why oxygen bars are so popular. I could think again, I could breathe again. I was still a flushed mess, but I was ok.

After a few hours, the dose of the magnesium sulfate was dropped to a more tolerable drip. I was merely flushed.

They told me not to eat. They worried the baby might come at any time.  It was okay, though. Between the mag sulfate and the contractions and fear, I didn't have much of an appetite.

The contractions got more regular. They didn't want to check to see if the stitches were holding, they didn't want to risk infection or rupture.  An abdominal ultrasound revealed a healthy baby and a cervix that, at the top, was about three to five centimeters dilated.  The circlage looked like it was still holding things shut.

At nine pm, after six to seven hours of labor, my contractions finally started to slow to less than eight an hour.  The doctors started to discuss a plan. One day at a time. Let's keep this baby in as long as possible. I'm only six days from viability. I want to make it through the week at least.  Contractions were slowing. The clock was getting closer to tomorrow. Maybe we'd make it another day.

And then I felt a pop and a warm gush in my vaginal canal.

"My water just broke," I said.

"Are you sure?"

"Yes."

I stayed still. I knew that he needed all the amniotic fluid I could give him. I knew that premature rupture of membranes at this stage didn't necessitate delivery. And I wasn't going to deliver. No. Too early. Don't move.

If I shifted my weight, the gush would come again.

Don't move.

It must have been a high break, because the "don't move" technique seemed to work.

I wasn't getting up at all at this point, anyway. They'd bring me everything I needed, including a bedpan.

By midnight the contractions had slowed to about four an hour. By six am they were down to two or three an hour.

We'd made it through the night.


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Note from today, a year later: A few weeks ago the same friend asked if we could make another prayer box for the community event this year.He thought the girls might like it. He didn't know. I politely (I hope) declined. It hurt to even think about doing this activity again. 

Enjoying summer while still on bed rest. Settling in for the long haul.

A year ago yesterday, we finally had that back yard cookout with our friends from out of town.  The one we were supposed to have the day things went wrong.  The doctors had said that I could walk outside (if it wasn't too hot) and lay out in my back yard. I wasn't to get up and down, but Steve had gotten a reclining lawn chair for me, and I was ready to have a little bit of a summer.

So I sat and watched my girls and their girls play in the back yard, watering the plants with water from our rain barrel, eating s'mores, and all in all having a great time.


I decided that if I was going to be on bedrest for four months,
1. I was going to be as good as possible, at least until 24 weeks
2. I was going to have as much of a life as possible while still obeying rule one. It was healthier for me and baby.

This was my way of doing that.

Things were really really stable.  Contractions were almost non-existent. The worst was over.

Steve's mom was even making plans to leave us for the weekend and see her mother.  Steve could take care of the girls, and I was in no danger.

We were getting there.  We were making this into a new "normal."  I could do this for four months.

------------
I had my baby later that week.

Little guys, big plans, and a year ago today (on bed rest)

A year ago today I was on bed rest at home.  The hippo at the foot of my bed read 22 weeks, 5 days in preschooler scribbles. It had taken some convincing to get Ella to write the numbers the correct way.  It almost said 2 days again. But we'd been working on it, and after a little convincing, the 5 got put down facing the right direction.

I was entertaining myself with processing forms for work.  My boss brought by the papers in a big manila envelope. I told him I could commit to ten hours a week. Just enough to keep me sane and keep things flowing at work, not so much that I'd feel pressured to work if it seemed like laying flat would be the best thing to do.  We'd gotten a work laptop so that I could access the necessary files.  I had that on the desk that came with our medical bed.  I could kick the desk to the foot of my bed when I was done working, and press a button to recline the bed, and stretch out to sleep or watch Drop Dead Diva on the new TV.

My mother-in-law would ask if I needed anything every few hours. She made sure I was well hydrated.  Sometimes she'd just sit in the chair in my room and chat. It was so nice to have her there. She greeted and talked to well-wishers when they came by with food. She watched my children so that Steve could keep doing his job and I wouldn't feel pressured to get out of bed.  Others volunteered to take my children on play dates so that my mother-in-law could get a break from it all.  While things were harried on the outside of the house, in my little day room, they were perfectly pleasant most of the time. Mom wouldn't be with us for long, I knew, but for every day that she could stay -- it was a huge blessing.

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Today, July 12, 2013

Little guys can do big things too.

That song, written for the Veggie Tales version of David and Goliath, was on the list of "songs that make me think of and pray for Jonathan," listed on a blog by a close friend a bit under a year ago.

I am celebrating tonight because Jonathan fed himself three alphabet cookies.  Alphabet cookies each have 10 calories. Even though a lot of the food ended up smeared to his chest or stored between fingers for later, surely he got at least the equivalent of two alphabet cookies in him. That's 20 calories. That's like an extra ounce of milk worth of calories!

These days I try to not fret. But I do.  Preemie parents seem to be more prone to worry.  Maybe it's because we have heard over and over that the chances of some sort of disorder are higher for our kids.  The earlier the preemie, the higher the likelihood of a complicating factor. We want to do right by them, but we don't always know what "right" is.

I'm fretting about his caloric intake. I know I should be grateful for his sustained life, and I am. But ... it seems he decided that one can either wiggled and move, or grow; and he is way more interested in moving than in growing.  Ever since he learned to butt-scoot across the floor and fling himself from side to side, he's been unstoppable.

And unstoppable means extra calories burned. We try to make up for it by giving him more calories, but more food in his belly plus more movement seems to mean more tummy upset.  Filling him to the brim makes it worse, so we've spent much of the last few weeks trying to figure out the right balance.

The girls are in a heated discussion on the couch about who will blow out Jonathan's candle in five days.  They're pretty sure he won't be able to do it, and they want to claim dibs. Just five days until his birthday.

Ella demonstrates pinch-able cheeks, like Grandmas like.

We met a two month old this week whose hands and feet are Jonathan's size. Jonathan is still wearing newborn shoes and three month old clothing.  But he's a year old, or eight months "adjusted age." Great Aunts and Grandmas everywhere warn us that "they grow up so fast" and "cherish them while they're still small."  But I'm ready to be done cherishing my small baby. 

He's twice his birth height and over ten times his birth weight.  For a normal baby, that'd mean that he'd be around 80 or 90 pounds and over three and a quarter feet tall on their first birthday.  So I should be proud of his progress, right?

I was. I didn't mind when he was small but tracking with the growth curve. But he's been in the 13 lb range for the last two and a half months. A baby his age usually grows about five ounce a week, so he should be at least sixteen pounds by now, but instead of putting on five ounces a week, he puts on five ounces a month.

A friend of mine wrote this fabulous blog post called "Incompetent What?" about the nasty terms that the medical profession has given out.  Jonathan's ailment is called "failure to thrive."  It's common enough that it has a short hand "FTT."  That means that there are lots of other parents out there like me -- not just parents of preemies -- who have seen this label attached to their child.  Makes a person feel just a bit helpless.  It causes us to stuff our baby silly, even when (like last week) he has a tummy bug and would really prefer we let him be.  I think the term "small" would be nicer.

He's thriving in other ways.  He looks out the window, concentrates, and then bursts into a huge grin. He laughs at the humorous things of life. He has learned to say "bahba" -- it means "don't feed me any more of that milk."  He learned the "b" sound because he could make it without opening his mouth to the bottle.  He's small, but he's a smart cookie.

Besides, lots of people were small.  Napoleon was short. (Okay, a quick web search reveals that historians now think he was 5'7" -- just for the record, in my family, that's short.)

Oh, and while we're at it, lots of people were preemies, too.  And they went on to do great things.  Einstein was a preemie.

So maybe Jonathan will be a blend of Einstein and Napoleon.

A ruthless conquer who also happens to be a genius in physics.

I know these smiles all look the same,
but this is my evil mad scientist laugh. Really.

Because that's what the world needs, right? A mad scientist who succeeds at world domination!

...

Okay, or maybe he'll just be small.  I'd take that.  Small is good.

(Unless he's a benevolent dictator who gets me a nice mansion.
Future dictators of the world: remember your mother when you've finished conquering.)

P.S. In case you wondered, yes. I was obsessing over this just a week ago, too. I should read my own blog sometimes.

Good bedrest gifts

About a year ago today, I posted on facebook, "please post witty or amusing things." I wanted my friends to entertain me with their lives, since I was stuck in bed for a while and my life was less than interesting. Today I'm picking up on that theme.  "How to Keep Your Bedrest Friend Sane."

To follow up on my post from yesterday, about how amazing my mother-in-law was a year ago today and about how we were surrounded with well-wishes and gifts, I am dedicating this post to a list of good bedrest gifts.  Some of these are from me, some are from my very unscientific poll on a board for bedrest mommas (board bedrest mommas?).  If you're a momma from that board, thanks for your ideas!  I hope I represented you well.

For anyone:

• Staying in touch!  This one is huge.  Make regular appointments to call or stop by. (Make appointments so that I'm in my street clothes when you show up, because most days, I'm probably in pjs all day. Can you blame me?)  Actually show up when you make appointments.  Seems like a no-brainer, but really, when you're as ... stuck... as we are, it's nice to know what to look forward to, and if you don't come, we'll probably notice. And it might just sting.
• Set up skype time, texting dates, or telephone dates at a regular time every few days or week
• TV shows
• Favorite takeout menu with a gift card to that place
• A fluffy pillow or three.  Maybe even a body pillow if I don't have one yet
• Crafting kits (if she's into that sort of thing -- knitting, crocheting, etc.)
• Soduku puzzles or crosswords
• If cool weather: Snuggly blanket, homemade slippers or fuzzy socks, robe, comfy sweatshirt
• A calendar with positive messages and special notes when goal weeks come, so that the person can keep track or mark it off.  Big goal weeks, incidentally, are 24, 28, 32, 34, & 37.  Viability, greater chances... and I can't really remember what the others are for, because I never got there.  37 marks the front end of full term. I think 34 or 35 marks a time in which you could have the baby and if the baby was doing well enough, you might be able to avoid the NICU altogether.
• If I have older kids: arrange care for the older kids. Best yet, coordinate care with a bunch of mutual friends so that I don't have to think about it
• Send random texts or memes or humorous messages -- things that say you're thinking about us, but that remind us of the world beyond our bedrest room.
• Thank you notes (with stamps)
• A journal or notebook to keep track of things
• Funny, light reading.  Not baby reading necessarily, something to take our mind OFF the baby for a bit
• Audible books or books on tape.  Sometimes we just want to close our eyes and rest
• Favorite CDs
• A cup with a lid and a straw.  Hard plastic, not disposable.  Maybe even a cute pitcher to go with it, with a spout so that I don't have to have gravity on my side to get water for myself.
• If I like flowers, get me flowers. But please no floral arrangements that look like they're from a funeral home. And wait for the cute baby floral arrangements until I actually have had the baby.  It's better that way. [My side note: my favorite bedrest floral gift was the rose given to me by another mom on bedrest.  A huge plus was that I could plant the mini rose, and each year it gives me a few more blooms.]
• Potted plants are great!

For the hospitalized:

• Fresh fruit
• Healthy snacks
• Favorite desserts [see a theme?  hospital food stinks most places.  having to eat it for two days is fine, two months is terrible.]
• Call an hour before hand, say "I'm going to [name of favorite restaurant], I am bringing you dinner, what sounds best to you?"
• Visit.  Plan to do something at the visit besides feeling sorry for us or talking about how it stinks that we're where we are.  So, bring a game or a movie. (Side note: see oxytocin rules -- this probably doesn't apply to your bedrest friend, but it might.)

For those at home on bedrest:

• Practical things.  Come over and do laundry or dishes.  Don't ask, just tell.  If you asked me, I would have told you I could deal with it myself, even when I couldn't.
• It's really really great if you can take my kids somewhere fun. If I don't know you well yet, though, don't ask yet.  Same applies if my kids don't know you well yet. It's an overwhelming enough time for them already. Start coming over and helping out here at home so we get to know you first, then volunteer to take my kids to the back yard or the park. It'll be a lot less awkward for all of us if I know my kids know you (and your kids, if applicable) first.
• Bring easy to prepare, freezable meals.  If we can't use them at that moment, they WILL be used over the next few months.  Invaluable. (Maybe ask for food aversions before you cook though.)

For after the second trimester (or at least after 24 weeks):
This has to be separated into another list for two reasons.  First, there's the "baby isn't viable, but we've painted the nursery pink" reason. A year ago today -- when things got really really bad, I was glad I didn't have much at home specially purchased for the baby.  It could have been very very bad if I had lost my baby (very real possibility) and then come home to reminders of our past dreams.  So, until 24 weeks -- maybe stay away from this list.  And then, second, see my oxytocin rules.  Granted, this only applies to the extreme case of preterm labor, I really haven't heard of many people having this particular issue, but it's good to keep in mind.  Best be safe before viability.

• Help paint the baby's room, help pick out paint colors.
• Help put up baby gear, wash windows, clean the room with a deep clean, etc.
• Sit with me while I "internet shop" for a new baby registry
• Put together an at-home baby shower for me.  Clean the house and set up the living room with no help needed from me, so all I have to do is come out and lay on the couch and enjoy a small group of my closest friends.  Make sure there's lots of water for me.

----
One HUGE thing I learned last year: Those that are the most in need of help are also those with the fewest resources to ask for it -- be it lack of mental reserves, social stamina, or just the friends/support to contact.  So, DON'T say "let me know if I can do anything to help," because if they really really need you, it's also a point where it's really really hard for them to know how or when to contact you to tell you. They're already too pulled. They don't have the reserves to ask for help. Picking up the phone SEEMS like a small thing, but it's not.  It means finding a number, making sure you're sane enough not to break down in tears, making sure you're okay mentally if they say "no," and making sure your older kids aren't crying.  I rarely took someone up on a "let me know if I can..." offer, and it was always exhausting and overwhelming to call.

So, instead, say "I will be coming by on Friday with some food.  Save me some dirty dishes, because I'm watching your kids and washing your dishes when I drop by.  If Friday doesn't work, maybe I could come by Thursday instead?"


And here's another blog that gives even more good bedrest ideas. Thanks, Virginia's mom!

Home again!

A year ago today I was finally given permission to come home.

It was grand.

I was given strict instructions.  No walking up and down stairs (more than once a day). No getting out of bed except to shower or use the bathroom. You have a one-meal-a-day allowance with your family. You can recline on a chair in the back yard, but not on too hot of a day and don't be getting up and down chasing the kids.  I should have recognized this as "really serious bedrest" -- but I was confident it was just precautionary, that I'd be carrying this baby for a long time now that the circlage was place. But, I would do what I could for this baby, and if that meant laying down and watching movies for a summer, I could handle it.

My mother-in-law had come into town to take care of my girls about as soon as I'd been hospitalized. She'd also been managing the house and brain-storming my well-being with her sister and mother.

The net effect was this:

1. The house was completely clean - at least the main floor, which was the only floor I could access. (They didn't want me to feel like I needed to tidy things.)

2. We have a three bedroom house. They had turned the third bedroom my dayroom for bed rest.  It had been Ella's initially and then had turned into either a dining room or an office after Ella moved into Mimi's room. We had put a lot of planning into how we would convert it into an office for Steve. That was before we got pregnant. Now it was going to become the baby's room, but that wouldn't be for a while, so they'd tried their best to make it into my own entertainment center and bed-rest office.  It was amazing.

3. In that room was a luxury bed.  They rented me a hospital bed. Seriously, folks, THIS is a great idea. I didn't have to use tummy muscles or ask for help to reposition. Insurance covered the cost of this fully. They even rented (at cost to us) a hospital desk thingy.

4. Steve's extended family all went in and bought me an HD TV.  We're not TV people. We still had one of the old fashion kind with bunny ears and a converter box. We had no cable. But we got a free trial of netflix, my friends brought blue ray DVDs, and suddenly I had way more tv possibilities than I could imagine.  Plus, the olympics were going to be on soon.  And they were taking place in the UK. We'd just been there.

5. Also in my room: a bouquet of flowers (I think from flowers in the yard, but it looked professional - a mother in law who is a florist is a wonderful thing), a basket for me to put projects in, and an armchair for guests.

6. The blackboard hippo.  I had foolishly pasted a hippo shaped vinal blackboard cut out to the wall of the room when it was Ella's.  The hippo now sat at my feet on the wall day in and day out.  We turned it into a counter.  Every morning Ella would crawl up on the foot of my bed and change the days to indicate how pregnant I was. 22 weeks, 2 days.  Except she couldn't write her letters the right way, and despite my correction she was adamant that she was doing it right, so it really read "SS weeks, S days."  The next day I was SS weeks, E days pregnant. Maybe it was code?

Either way, I was set. My bed was next to a window, so I could even look outside and watch my girls play. Up and down, I could adjust myself in bed without using my tummy muscles and without asking for help.

Friends came with food. We were well taken care of.

--------------

TODAY, July 9, 2013.  This week JAM has discovered how to shake his head.  He also realizes that this has some power on conversation. So now he "talks" with us. He seems to take the girls side on everything. "We should go to bed" (shakes head and giggles) "because aren't you tired?" (shakes head and gets REALLY big grin on his face) "Do you want the girls to stay up with you?" (shy look and buries his head in dad's shoulder, then looks up and smiles)...

This guy is going to be trouble.

Mimi (4 years old)at the dinner table playing a game with Ella (now 6)
M: My person's name starts with J-O-N-A-T-H-A-N
E: That's easy!  JONATHAN!
M: Ye- Nope. That's close.  It's <in a high pitched voice> CUTIE PIE!

I think they like their brother.  Who could blame them?  He takes their side.

Of spiritual support on the cusp between new life and death

July 8, 2013

Prayers.

A year ago today July 8, 2012, I really began to appreciate prayer in a new way.  And over the next few months, that appreciation would only grow. It seemed that representatives from most of Christendom had me and my little baby upheld with their prayers.

My brother's in-law in Bulgaria was lighting candles in the Orthodox church.  My Catholic friends shared our story with their parish, and we were prayed for. At least one Coptic Christian had us on his prayer list.  Our old and new protestant churches were praying. We had representatives in Asia, Africa, Europe, North America and (strangely enough) an African in India all asking for updates and praying for us.

That's a little intimidating. And awesome. We coveted those prayers.

My son had made it through the weekend.  I was still pregnant.  Things had not "presented themselves" as the doctor had thought they might. Indeed, since things had been so quiet, a week ago today I was given wheelchair privileges.

A few Sunday afternoons a month, we would go to eat with friends of ours after church. I hadn't been able to see them for a few weeks, so, a year ago today, with my new privileges, I went downstairs to the food court and they joined me with all our kids.  The lunch didn't last more than half an hour.  I had a contraction and so I couldn't linger, but the outing was nice.  I'd missed my pastor's last sermon. He was leaving for Canada in a few days to start pastoring another church. They caught me up on what I'd missed.  Sounds like the sermon was a good one.

I was now 22 weeks 1 day pregnant.  Still too early to deliver, still two weeks until viability, but we had made it through the weekend and I had great hope I'd be pregnant for a lot longer. I was mentally preparing for long-term bedrest. Despite how bad things had looked just a few days ago, now it looked like I'd be pregnant for a while. I was optimistic.

This would not be the first time when things looked really bad for JAM, and then somehow we squeaked by. Just watch. It happens again about a half a dozen times over the next few months.

I appreciated the prayers so much. I appreciated the notes and cards and well-wishes. I loved the phone-calls.

-------------------------------------

There was something that didn't sit well, though, with about a fifth of the cards or instant messages I'd receive.  I couldn't name it, so I couldn't explain it. I gathered it was my fault. No one said anything wrong or off color. But I knew I wasn't seeing their words, the bible verse references they sent, the way they wanted me to see them. And I felt a little bad about that.

That afternoon about a year ago another friend from graduate school stopped by.  Brian had an MDiv and a gift for speaking truth in no-nonsense terms. He and his wife had moved to our area the same time as us, which was a blessing that went both ways. Our families had stayed good friends. He was in the hospital visiting someone who had had recent heart issues as part of his pastoral duties to his church.  He dropped by my room to say "hi."

"Why does this bother me?" I asked him, "Why am I upset when people quote verses out of context about how everything will be okay? I know they're trying to help lift my spirits."

"They are spiritual incantations" he said, "it's what people want for you, so they 'claim' it hoping that will make it be so."  And thus, I had a word, a phrase, for what bothered me so much. Spiritual incantations. Wave a wand, things will have to be okay, right? That's what it felt like. 

But it might not be so, and what then? What if my spirits weren't lifted by the verses they claimed for me, and furthermore, what if they claimed the wrong verses?

Brian assured me that I wasn't completely off my rocker, which was good, because I was pretty sure my soul was as hard as a rock for not rejoicing with every one of God's good promises.

Now, before I go any further, I want to say something to those of you thinking, "Oh no, she's talking about me!  I did this a year ago! I sent her a hopeful Bible verse. But I was just trying to help."

First, I actually have no recollection about who did this, just a general memory of hearing and reading lots of Bible verses that were meant to encourage and having them fall on the hard concrete of my heart. Second, I recognized even in the moment that this was not the intent, that the verses were from people trying desperately to hold out some light in a dark situation. Third, it probably wasn't you. Most verses and well-wishes fell on a softer part of my soul. This was especially when they came from people who were trying their hardest to walk with me on this path.

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"Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, 'move from here to there,' and it will move. Nothing will be impossible for you." (Matthew 17:20) If I have faith I can move mountains. Jesus said it, and looking back now, it's an inspiration, because He also did it.

But a year ago -- a year ago I'd worked so hard to give up my desires on this one and follow God's lead on this one. "Trust in the Lord with all your heart and lean not on your own understanding" (Proverbs 3:5-6). I wanted Him to direct the path, even if it didn't make sense to me. So I had a hard time getting that mountain to move. "Keep me pregnant for a month longer -- or maybe until I'm full term" was the desire of my heart.  But what if it wasn't His plan? (Actually, turns out that wasn't how things turned out.)

By His grace, I wanted my son to live. I had wrestled with him on this one. I knew that he knew my son. I knew that he knew my son before I was even pregnant. I didn't know if that meant that my son would live, though. But God was with us in this, and God was good. At that point, that's all I could cling to. I wasn't ready to think beyond that to specifics. That seemed risky territory.

Besides, what would happen when he didn't live?  What would I say to those who had hoped so hard? What did that say about me and my faith?  My faith was about as small as a mustard seed most days. Maybe they'd look at me and say that a mustard-seed faith just wasn't enough, that I should have faithed harder. How do you faith, anyway?  It's not a verb.

While things were looking up, while I was truly optimistic and thought I might even carry this baby to term, he wasn't viable yet. Maybe the days ahead would be harder than I could manage. (They would.) We were walking a fine line between new life and death.  Turns out we'd be on that tightrope for another two months, in one form or another, and I needed friends who would be with me in that, who were open to the possibility of death.

By God's grace my child would live. I'll take all the verses, the ones that fell on the soft soil of my heart and the ones that fell on the concrete edges, now, because we're in a different spot. Слава Богу.

Thank you for walking with me back then. Thanks for sending your notes of encouragement and your phone calls. Thanks for dropping by unexpectedly and telling me I wasn't insane to hold strangely to a mix of hope and fear. Even if I tossed your note aside at that time, even the notes that fell on concrete showed me that I wasn't alone. Even then they encouraged.

So, I guess what I'm saying a year out is not only thank you for sustaining us, but also forgive my hard heart. Thank you for journeying with us, despite ourselves. It is a hard road, walking between possible life and possible death. Knowing what words to say -- it's almost impossible. To those who sat with us and encouraged us with your presence, thank you. Looking back, I'd rather have words that felt like spiritual incantations than no words at all. The words said that you were holding out hope. And that's what I needed.

P.S. To those who somehow always had the right words (your initials are S.S., R.M., B.M., & V.L., among others -- there are quite a few wordsmiths among you), thank you. Thank you so much. Words are such powerful gifts.