When Your Unborn Baby Has a Broken Heart

I wrote today’s post in February of 2007—the day doctors discovered our youngest son’s heart condition by fetal echo, at 20 weeks gestation. I didn’t have a blog back then, so I just filed it away and never showed it to anyone. 

As I was driving to the bus stop this morning, I remembered that I had written it. I decided not to edit it, even though I feel my writing has matured since then. But if you’re walking through a fog of fear and uncertainty today, perhaps it will encourage you.

I should also add that, after 2 open heart surgeries and too many other procedures to count, our son is a very healthy, energetic and rambunctious boy (as you can see in this photo). 

Today is his 5^th birthday.

* * * *

February, 2007: Today, Joy had a fetal echo performed at the Children’s Heart Center — a place, and a team of people, we have come to know very well over the last 7 years of visits and procedures with Elli.

The mood was light. Sherry greeted us with a smile. She had been the surgical nurse at two of Elli’s heart surgeries so many years ago, and had been with us each step of the way. As strange as it may sound, the cardiology clinic at Children’s is a familiar place to us, with familiar faces everywhere.

Joy laid on the table and the technician started moving the probe around her belly. Almost instantly we saw it. The baby was a boy. Oh, how we smiled and celebrated! We had been careful not to cast our hopes one way or the other, but were overjoyed to know that the boys could share a room.

For about 30 minutes, the technician took careful measurements and the conversation was light, alternating between personal and procedural chit chat. “I have two kids, and I always call my kids the wrong name,” she said. “There are the 4 chambers. Ooh, there’s his little foot!” 

The technician left to take the data to the Cardiology Fellow in the Heart Center who had performed past fetal echoes for us. We knew the drill. The doctor would take a look in another room and drop in to let us know how everything looked.

When the doctor returned, he shook our hands with a nervous smile, plopped down somewhat uneasily on the stool at the echo machine, and said, “I have some concerns about the baby’s heart, and I want to take another look myself at some things.”

He re-prepped Joy and carefully maneuvered the wand around on her belly, holding it still with his face up close to the computer screen, frowning, then moving it again for another angle. The baby was squirmy, which was complicating his efforts to get the perfect angle. 

He didn’t speak for what must have been 15-minutes as he did this, except for asking 2 questions.

“You did the genetic testing after Elli, right?”

“Yes,” we answered. “It all came back inconclusive.” 

“That’s what I thought,” he said. “How far along are you?”

“Twenty weeks tomorrow,” Joy answered.

Finally, he carefully draped the wand’s cord around his neck and wiped the jelly off his hands.

I can’t remember his exact words, but he called it “pulmonary atresia.” I only remember certain words and phrases like “complex” and “unfortunately” and “more complex than Elli.” I didn’t think it got more complex than Elli.

He also informed us that if we wanted to terminate the pregnancy, we had about a 3-week window to do so. He made it clear that he had to say that, and was neither for nor against it.

We had been here before. It was so much of the same, yet so different. With Elli, we didn’t know anything about her diagnosis until she was about to die at 3 days old. 

With this little boy, we know ahead of time that he will be sick. He is not sick now, though. None of the complications of pulmonary atresia affect someone as long as they are attached to a placenta. It is only when he makes the transition to breathing on his own that the complications will come. In that sense, it is good to know he will be whisked away when he is born, and will get the best care possible.

There’s so much we don’t know. Yet, at the same time, there’s so much we do know. We have a diagnosis at 20 weeks gestation. We have access to great medical care and the latest technology. 

Yet we are careful not make the bells and whistles our “capital H” hope. We must not let doctors de-throne Christ in our hearts.

Jesus prayed, “Lead us not into temptation, but deliver us from evil.” He didn’t pray, “Lead us not into chromosomal abnormalities, but deliver us from the odds.” Physical infirmities are a valuable tool by which we sharpen our dependence and our view and our love and our reverence for God. Illness is not the most horrifying manifestation of the fall on humankind. Sin is.

And so our prayer is that God would lead us not into the temptations that come with this approaching test, that He would shape us into a closer likeness to His Son, that we would make the surpassing worth of knowing Him our focus, and our joy.

Surgeries and big decisions are on the horizon. We have already begun asking specifically for wisdom around his care.

God is in control, and our best response is to cast our Hope in Him.

Though the fig tree should not blossom, nor fruit be on the vines,
the produce of the olive fail and the fields yield no food, the flock be cut off from the fold and there be no herd in the stalls, yet I will rejoice in the LORD; I will take joy in the God of my salvation. GOD, the Lord, is my strength; he makes my feet like the deer's; he makes me tread on my high places.

Habakkuk 3:17-19

I Just Want To Back Away from the Noise

If you haven’t seen the movie Contact with Jodie Foster and Matthew McConaughey, the opening scene is worth the cost of renting it (or, as I was delighted to discover—streaming it on Netflix).

It starts out as a slow-orbit satellite view of the United States at night. Then, you find yourself starting to back away from earth, with ever-increasing speed. The earth gradually gets smaller, and smaller, and smaller.

Then, after several seconds of complete blackness, with only the earth in your field of vision, you whiz past the moon, Jupiter and Saturn. You pass by the individual boulders that make up its beautiful rings.

As if the visual spectacle isn’t riveting enough, the audio has its own fascinating progression. As the camera continues to back you away from earth for literally millions of miles, you hear radio transmissions that take you back in time. Past Presidents. Hit songs and TV themes from the 80s, then the 70s, then the 60s, and so on. You hear a moment of Dr. Martin Luther King, Jr.’s I Have a Dream speech. Neil Armstrong’s famous one small step for man transmission from the moon. Chilling audio of speeches by Hitler are among the last things you hear as you fade deeper into space.

You finally reach a distance where radio waves haven’t had the time to travel. Silence falls on the scene, and an indescribable tranquility comes over you. Beautiful, glowing heavenly bodies continue to come in and out of your field of view. The pink, purple and amber glow of galaxies paint the glory of God across the blackness of space. The complete silence strips away any distractions that would have kept you from seeing their beauty.

It is indescribably beautiful. It's just you, and the universe.

My first time making this cinematic trip was an unforgettable experience. It affected me. Most of all, it showed me how noise (even well-meaning noise) can be a pollutant of sorts, working against having a clear-eyed view of who God is, and all that He has made.

The blogs have been lit up lately with a lot of ground level noise that has distracted me from what I should be focusing on. Perhaps you're feeling the same way.

So I wanted to post that opening scene here, in hopes that you'll join me in a return to silent reflection on the God Who is there. The God who made everything. The God who will still be the same God, after all the temporary static fades into silence.

Enjoy it. Enjoy Him.

photo credit

That Syncope, That Saturday (Part 2)

If you didn't read the first installment of this story, the following will make no sense. You can read Part 1 here.

Looking back on last Saturday’s events, I keep asking myself, “Scott, why didn’t you get yourself the heck out of that packed room? Why on earth did you stay?”

The truth is I waited too long for that to be possible. Had I been more proactive after the first onslaught of vertigo, I might have been able to walk gingerly to the door—find help, or a private place to lie down. 

But there I was, completely struck down, in front of half the mothers in the neighborhood.

In the last post, I used the word “collapsed.” But I should clarify. I never actually came crashing down on the floor like a sack of potatoes. It was more of an incremental collapse—like the last scene in Terminator, where the cyborg is systematically dismembered down to a torso that will not die. I went from bending over with my hands on my knees, to squatting, to kneeling, to sitting, to lying down—all while the sea of barbells continued to go up and down all around me.

My eyesight came and went, as did the audibility of the music. I kept lifting my water bottle to my mouth, but the thought of drinking made my nausea worse. I had the reflexes of a wet vegetable, and was trying to give the appearance of a prize fighter.

As I lay there on my back with my knees bent, a woman broke into my tiny tunnel vision. I think she had shoulder-length curly brown hair and was wearing a purple polo.

“Hi, I’m one of the wellness workers in the class today. Here, put this on the back of your neck.” She handed me a white gym towel that felt like it had been steeping in a bucket of ice water all night. “And you really should not be lying down. You need to sit up. I’ll be back with a chair for you.”

Oh, fabulous. A chair.

I think she thought I was overheated, but I was actually overcome by the spinning ceiling over my head. I knew that lying down was best. But like a good patient, I went ahead and took her advice. She came back with the chair, plopped it in my tiny 6 ft. square, and helped me up into it.

Sitting. Did. Not. Help.

As I sat in the chair with that icy towel over my head (in the middle of the front row of a workout room full of people), my ears started ringing like a 747 was in the room. My field of vision shrunk to pinhole size. I wanted a trash can to throw up in. All I could do was moan. And I really moaned, loudly. The driving bass music was so loud that it drowned out my moaning (thank goodness).

After about 5 minutes of feeling like I was going to die in that chair, the instructor turned on some kind of new age dreamy music for the 5-minute cool down. “Oh crap,” I thought. “This is going to put me completely out.”

I remember leaning forward, and kind of sideways, in the chair. I came SO close to falling out of it. I must have looked like a complete stooge with a white towel over my head, all hunched over. But I never fell out of it.

The class ended, and the room cleared of all those poor people whose routines were probably ruined by my whole ordeal. Joy, along with the instructor and the "wellness" worker (who had not made me well), came over to me with concerned looks.

The wellness worker started violently beating 2 ice packs on the wood floor to activate them. She put one on the back of my neck and one on my forehead. I’m telling you, the ice did not help at all.

They all helped lower me back down onto the floor (what a relief) and elevated my feet on my riser. This was good. They took my pulse. 57. They took my blood pressure. 90s over 60s. That was low for me.

Then the wellness ice pack princess said, “Normally, the recovery time doesn’t take this long. Since it’s taking you a while to come out of this, we’re going to go ahead and call the squad and have them check you out. They’ll want to take you to the hospital. Is that OK?”

“O…K.”

In what seemed like a couple hundred seconds, two men in midnight blue clothes, and a couple of firemen wearing grimy yellow coats with glow-in-the-dark stripes and huge boots came lumbering across the fitness room floor with a gurney in tow. They took my blood pressure again, which by then was more like 100 over 60s, up a little. They listened to my heart. They pricked my finger; my sugar was 101.

I think all self-respecting ambulance drivers feel a strong obligation to transport the afflicted, even if they check out OK. So in my weakened condition, I decided not to fight them. They helped me onto the gurney and wheeled me out of the fitness room.

It was raining for the first time in weeks, as I rode out on that gurney for the first time in my life.

I lay still in the ambulance, staring at the ceiling and feeling better with each mile. I thought about all of those for whom that ceiling—the oxygen ports, the handles and the gauges—might have been the last thing they ever saw. I thanked God that on my first ride in an ambulance, I was neither in pain nor bleeding. He had been so gracious. This was going to be OK.

They wheeled me to Room 9, where I stayed for 2 or 3 hours while doctors gave me IV fluids, examined me and performed several tests—all of which came back completely normal. I had fallen into the 30% category of unexplainable syncope (pun intended).

At about 1pm, I signed my discharge papers, got up and walked out of the ER with Joy. The rain had stopped, and the sun was shining again. I was thankful to be alive after that syncope, that Saturday.

So if anyone ever tries to persuade you to go to Body Pump, don’t feel bad about saying no. Just tell them you’d rather not wind up in the hospital like someone you know.

That Syncope, That Saturday (Part 1)

As a storyteller, I’m always poised to passively observe the next story-worthy situation so I can write about it. But this time, passive observation went out the window. I took center stage in a situation that dozens are telling their families about tonight, probably as I write this. This time, I was the story.

I woke up around 7:45 this morning. I was thumbing through my Twitter feed in bed when Joy woke up, rolled over and said,

“I think there’s a ‘Body Pump’ class at 9:15. You should go with me.”

Joy prefers the regularly-scheduled group fitness classes at the community center because she tends to go too easy on herself when she works out alone. She needs someone to set the pace a bit higher than her liking. And, for whatever reason, she likes the camaraderie of corporate pain. It works for her.

Then there’s me. I’m a fitness hermit. When I go to the gym to work out, I don’t look at anybody. I don’t talk to anybody. To me, the whole idea of attending a fitness class is horrifying. It’s the same feeling I used to get when I would hear the announcer at the roller rink announce the “couples skate.” It awakens every ounce of discomfort inside me.

“OK. I’ll try it,” I said. So we got dressed, rushed through our breakfast, and got everyone out the door by 9:05. We dropped the kids off at the gym’s daycare area and run-walked down to a large room with mirrored walls and hardwood floors.

I have to guess that the big question on every guy’s mind as he approaches a fitness class is: Are there going to be any dudes in here? I quickly scanned the room and saw not one, but two guys preparing for the class, among the 25 or so women. What a relief.

By the time we had arrived, the floor was almost completely full. So we took our places, you guessed it—front and center of the room. Since we were so close to the instructor, Joy introduced me to her. I smiled and told her I had never been to a fitness class in my life. She gave me some reassuring words to make me feel more comfortable. We quickly grabbed our equipment from a corner of the room and took our places just before the music began.

I nervously loaded my barbell light. I was more interested in learning how the class worked than trying to impress anybody. I was constantly watching everyone around me to make sure I was doing everything right. I didn’t want to stick out more than I already did as a newbie, and a dude, front and center.

I had no idea what was about to happen.

The first 25 minutes were fairly easy. We did several sets of standing exercises with a barbell. I have a regular dumbbell routine I do at home with my upper body, so this was no big deal.

Then the instructor had us lay down on our backs on our little portable risers for a battery of chest exercises. I laid down on my riser, and quickly cocked my head sideways so I could follow her movements. Too quickly, I should say.

That’s when vertigo hit me with the force of 15 shots of vodka.

If you’ve ever had vertigo, you know how completely debilitating it can be. I have it on rare occasions. It’s very common, and it has something to do with the tiny hairs in your inner ear. When you get vertigo, you feel like you’re spinning out of control while sitting completely still. Your brain gets confused and tells your body all the normal things it would tell it at 4Gs—like bring on the profuse sweating, nausea and elevated heart rate.

But somehow, I got it under control long enough to finish the set. Then I stood up, and vertigo decked me again. Somehow, I again managed to get myself centered without stumbling around too much. We got through another set.

At that point, the 60-minute class was only half over, and my battle had just begun. The exercises really started to intensify. We did dozens of leg lunges with the barbell resting on our shoulders; rows while squatting; and triceps curls while laying on our backs. It was a lot of rapid up-and-down activity. And if you’ve ever had vertigo, you know that the best strategy for getting through an episode of vertigo is to lay completely still. Motion exacerbates it.

At that point, my t-shirt and sweat pants were wringing wet—but it was not from exertion or exhaustion. It was from the neurological confusion I had from the vertigo. Plus, I was working muscles I probably hadn’t worked in years. Every limb burned. Every pore poured.

I started to go downhill fast. All I could do was just stand still while a sea of barbells went up and down, all around me. The thought of lifting anything was completely out of the question. Survival became more important than pride. The room was spinning more now. My body was waging a coup de tat against Body Pump insurgency.

Then, even standing became more difficult. Blackness, like spilled ink, broke into my peripheral vision. The hard-driving music got tinny and hollow sounding. Nausea set in. My limbs could no longer hold me up. I dropped to the floor.

I’m front and center. The room is packed.

To be continued…

Church Search Chronicles: Accountable Churches vs. Autonomous Churches

When I slide into the driver’s seat of my car, the first thing I always do is fasten my seatbelt. By now, it’s an involuntary action—it’s so automatic that I don’t really even think about it. 

The irony is that after all these years, I haven’t needed it. But it only takes one moment for that seatbelt to make all the difference in how I fare in a car accident. In a split second, it could save my life.

It takes advanced planning to build safeguards into our lives. They don’t happen instantaneously. They take intention, realism and forethought to implement. We may go decades without needing them. But a day will come when their years of dormancy will prove to have not been in vain.

Lately, I’ve been thinking a lot about safeguards in the context of church. For example, what safeguards should churches build into their by-laws to inform how they settle disputes and disagreements that emerge between pastors and parishioners, or even among pastoral teams? Can a church organize itself as a completely autonomous entity under God’s Word, under the assumption that no issue is too great to solve within their own four walls?

I have come to the conviction that such an assumption may be harmless in the short-term, but perilous, even fatal, in the long-term. It’s like driving without a seatbelt.

Yesterday, we re-visited a church we had visited earlier in the summer, which had remained at the top of our list. There are so many things we love about it. But perhaps the one aspect that most attracted us to this church is the structure of accountability they’ve been very intentional about putting in place.

Typically, when we hear the word “accountability” in church circles, we think internally—small groups and 1:1 relationships between people who sharpen each other as iron sharpens iron. This is important. But I’ve learned that there’s another kind of accountability that needs to be present as well for the long-term health of a local church. I’m talking about its external accountability.

This church is part of a regional network of churches that provides external accountability and support, while still giving it a healthy measure of autonomy as a local church. Like a seatbelt, it doesn’t pinch or chafe. But in the event of an issue or disagreement that can’t be settled, the elders have a higher human institution than themselves to whom they must answer, or who can also go to bat for them if needed.

World history is our best witness to the phrase "absolute power corrupts absolutely.” And personal experience tells us that this phrase doesn’t just apply to secular and civil institutions. In any completely autonomous entity with no higher-level human accountability, it is far too easy for the leader(s) to fall into a sinful pattern (sometimes subconsciously) of manipulating and lording over those in their charge.

Sadly, even a group of well-intentioned leaders can fall into this trap together, leaving the congregation with no formal process in place by which they can bring a legitimate charge against them. With by-laws that are carefully crafted to protect the leadership from any recourse, the congregation is left without a voice. Anyone who musters up the courage to make an attempt to lovingly come alongside the leadership is deemed insubordinate at best, and apostate at worst.

On our first visit to this church, the preaching pastor made it clear in a newcomer’s class that the buck did not stop with him, or anyone else in leadership. Although they believe deeply in the biblical model of authority and submission in the local church, they humbly hold themselves accountable—to each other, to the congregation, and to the outside network of like-minded churches. This was truly refreshing.

We're in a place now where we feel it's critical for the next church we join to have an outside, objective structure of accountability in place. No human system is perfect. Even higher levels of accountability can be corrupt. But we feel that this is a safer structure all around for pastor and parishioner alike.

Like a seatbelt, you may never need it. But then again, you may. It only takes one time to make all the difference.

What do you think? Is it wise for a church to insist on isolating itself from outside accountability and say they need only answer to God? Have you seen autonomous churches work out issues in isolation, with favorable results? How about churches that had good accountability in place?

Church Search Chronicles: "Watch This Clip"

One thing that has really stood out to me in our church search is the saturation and infatuation with multimedia.

This may be something you’ve grown quite accustomed to in your church. But it’s a new thing to me. Maybe it’s because I’ve never been in a church with this kind of technical capability, or creativity. I don’t know.

In the churches we have visited, video seems to be a central element to the worship experience. Before the service, a reel keeps you entertained. The announcements are peppered with promos advertising upcoming events. Most sermons start off with a video clip, while the pastor stands off to the side, or leans forward in the front row to watch.

These pre-sermon clips may serve a variety of purposes. Some introduce a pithy running theme for a topical series, complete with a visual identity, branding elements and a music score. Some clips use emotional imagery, or staggering statistics, to grease the skids for the sermon. But sadly, many of them serve as an icebreaker of sorts, using humor to dispel any hint of solemnity that may have settled on the people. (Quick parenthesis: I really struggle with humor during corporate worship, but that’s another post.)

Some video clips may be shown at other points in the service, too, without a lot of rhyme or reason. Like this one the pastor showed during the offering at the mega-church we visited last Sunday. He prefaced the video by saying something like, “I love Lord of the Rings. And when I saw this, I thought it was really funny. Our lives are a journey, and Lord of the Rings is all about a journey. So enjoy.” Then this played on the 40 ft. screen while the offering plate was being passed:

Then, wouldn’t you know it: the sermon came to us via video.

Now don’t get me wrong. I’m just as much of a screen junkie as the next guy. I work all day long staring at a computer screen, where I help produce videos with huge budgets, tear-jerking emotion, high production quality and rich storytelling. Then I spend a lot of hours outside of work staring at any number of screens in our house.

Until recently, I even read my Bible on my iPad and iPhone. But I stopped doing it routinely, and here’s why: the novelty of the medium was competing with the preciousness of the message. I realized that I needed to give my eyes, ears, mind and heart breathing room away from the glow of the phosphors. I needed to be more deliberate about analog spiritual intake.

I grow so weary of digitized stimulation coming at me all day long. I have come to a point in my life where I want my spiritual intake and corporate worship to be peculiar—which, for me means as analog as possible. I want to smell the pages and feel their texture between my fingers. I want the words to be plain static text without undulating orbs or creeks flowing behind them. I want the sermon to be a real person talking, without any help or humor from pixelated concoctions brought to you by the new media ministry.

This is a snapshot of where I am right now. I may be in a different place 5 years from now. But I had no idea that this seemingly simple preference would make the church search so difficult.

Maybe I just need to lighten up.

How about you? Do you struggle with highly digitized corporate worship? If so, how have you found a way to deal with it? How does one go about finding a church that is “unplugged” these days?