Just saw this over at The Huffington Post. I just don’t even know what to say…
Just saw this over at The Huffington Post. I just don’t even know what to say…
The weeks of waiting were filled with drama and boredom. Some hours were spent with tightened chests, as we watched and hoped that our son’s breathing would stabilize. At one point he caught another deadly virus and spent a few days dangling over death’s open mouth. The Doctors and nurses worked feverishly to help bring him back from the brink as we stood by, helpless to do anything except hope. The virus was eventually killed off and we went back to hoping that his lungs would open up.
Other times, we would retreat back home to be with our other kids and just try to relax. At least, as best as one could relax, knowing that your tiniest family member was still fighting for their life, miles from our home. I always felt guilty going home. What if he were to die while I was away from his bed? I had to push that thought aside or else I would have simply gone insane. I still had to sleep and I still had to try to provide some sort of semblance for the sake of my other children.
My kids were a real encouragement. They could sense something was wrong and would hug us and kiss us to try to cheer us up. Which it always did. Friends were also the real heroes as we went through our ordeal. So many meals brought over. So many trips to visit us at the hospital. One friend even took it upon herself to host one of my kid’s birthday party. It meant so much, that we could celebrate their birthday and make it special, without the burden of planning an event while frayed by exhaustion.
Super Bowl Reminder
During all of this, my wife and I took a few hours off to go home and watch the Super Bowl on our tiny TV set. We collapsed into the couch with some cheese steaks as we looked forward to the game. Not that we had a real interest in the game, since our Eagles had been knocked out a few weeks before by the Tampa Bay Buccaneers. Oh well, at least it will be a fun escape from reality. And it was, until Joe Jurevicius caught a pass.
As Joe hauled in a catch, the announcers took the time to tell us that Joe’s wife had just had a baby prematurely. And that the baby was struggling to breath with the same condition as my son . The announcers wished Joe and his wife the best of luck and wondered out loud how hard it must be ,to be playing in the game of your life, while your young child is home struggling to live. I’m paraphrasing, but you get the idea.
It hit us like a ton of bricks, every time Joe caught the ball (and he was the leading receiver that night) we had lumps in our throats. I was now cheering for Joe, because he was doing what I was doing. Trying to live life while your heart is being stretched and tortured by something you can’t control. Joe and his Bucs easily beat the NY Giants that night. And we cheered for him, and hoped the best for both of our children.
Day of Reckoning
And then that day came. We received a call from the hospital. I was a little concerned, because over the past week we hadn’t had any calls, because my son had been mostly stable since fighting off his infection.
The nurse on the line said they had an update.
“Yes…” I answered.
“Today your son was removed from breathing support….he’s totally stable and breathing on his own!” the nurse replied.
Did I just hear that right? He’s breathing on his own. He’s alive and going to be ok. My emotions raced as I quickly got off the phone and rushed my wife down to the NICU.
It felt like a victory lap as we made another trip into the city. The sun was shining, we were smiling with anticipation and life all the sudden seemed like an eternal gift. After arriving, we climbed into the elevator and anxiously jumped out as the door opened to the NICU.
As we rounded the corner into my son’s room, we were greeted by a nurse who was getting ready to feed our son. He was wrapped in a blanket and a tiny hat. But the sight was strange, it was the first time in almost a month that he was not hooked up to a machine.
My wife quickly snapped him up and we cuddled him for hours. At one point a nurse asked if we would want to change his diaper. Who knew, that being able to change his diaper would seem like such a privilege! We felt nothing but joy and sheer relief. The waiting was over, my son was going to live!!!!!
Just A Little Bit Longer
Within 24 hours my son was completely stable and was transferred out of the NICU. He was transferred back to the hospital where he was born. He still had another 2 months of drawing down his pain medications so that he did not go into withdrawal. But the constant worry was over, and he continued to grow and recover.
During those months of recovery, we would take our other kids to visit him in the hospital. They were so enthralled by their newest sibling. I’ll never forget the one day a nurse brought him over to the observation window so my kids could wave hello. Their brother gave them a big smile and then fell asleep right before their curious eyes.
My one son asked me why the baby smiled. I told him it was because his baby brother thought he was cool. He then asked me if his baby brother thought he was cool, because he drank Gatorade. We all laughed hilariously. Kids do say the darndest things…
There’s still a little more to this story. But I plan to do that in another post soon. A kind of final thoughts, wrap up. But I do have one more story from this time period.
It was a Sunday morning and I had gone to the local bagel shop to grab some sandwiches and a morning paper. Our son was still in the hospital, but doing well and on the road to coming home. As I flipped through the paper I noticed a story about Joe Jurevicius. The wide receiver from the Super Bowl whose son had been born with same condition as mine. The story reported that Joe’s son had died. His son was one of the 10% that don’t ever come home. I teared up as I read it and wondered why my son had lived and his son had died?
As I read on, the interviewer asked Joe what was the hardest part of losing his tiny son. He replied, that the hardest part was when fans would approach him for an autograph for their children. The fact that others were able to share the Bucs Super Bowl victory with their children was a privilege that he would never know…and it left him numb.
I closed the paper and wiped away my tears. I finished my coffee and prepared to visit my son. My days of numbness had been brief and were ending. But my awareness of the frailty of life and the pain of loss would never leave me.
You don’t stare into the Abyss without it changing you forever.
I am sorry to use your blog like this but The Wartburg Watch has a serious problem and we are trying to get the word out. We will be down for the entire weekend. Things have just “disappeared.” There is concern that we have been hacked but that is not confirmed. Whatever happened, it is bad. Please pray for us.
Deb left this message over at SGM Survivors:
Happy Memorial Day weekend everyone!
For those of you who peruse The Wartburg Watch, just wanted to let you know that our website went down yesterday for some unknown reason. Our tech guy says the problem is extremely serious.
For those of you who have been enjoying our EChurch services, we apologize. We will post it when the blog is up and running again.
Rest assured that we are more determined than ever to get the truth out. We will not be hindered.
Blessings to all!
No fun, I hope to see TWW back up and running soon!
You can read Part 1 here
After arriving home with my wife, we made hasty arrangements for our other children to be cared for. It was hard, explaining to our young children why their brother had not come home yet. We didn’t lie to them, but we didn’t want to overburden their little hearts. We said that their brother was sick and that he would be home as soon as he was better. They seemed concerned, but were soon back to playing with toys and excited that Grandma was going to be watching them for a while.
As soon as Grandma arrived, my wife and I jumped back into the car to be with our son. The hospital had called while we were home and reported that he was not doing well. On the drive down, my wife and I talked some, but mostly listened to some brooding songs from the latest Jars of Clay CD. It was cold outside and the slow, brooding, acoustic based music seemed to fit our emotional state.
We arrived back at the Children’s Hospital, parked the car and embarked to see our son. We also were scheduled to meet the head Doctor leading the effort to save our son.
The Gentle Doctor
As we stepped off the elevator, we were greeted and quickly escorted to our son’s bedside. I already felt like this had become my second home, having already spent the night at his side.
He was still alive, but barely. Not only was his oxygen low, but he was now fighting a “super bug” that was very deadly. His heart rate was up too high…..a nurse would adjust something and his heart rate would stabilize but his oxygen would dive. I could tell that a high level of concern was occupying the nurses tending him and his many machines.
After a few minutes, the head Doctor arrived to introduce himself. He was a middle aged man, dark skin, gentle voice with a slight Indian accent. As we talked, he very patiently explained that our son’s condition was very common. He then asked, in his gentle voice, if we wanted the good news or bad news first.
We both said “Good news…please!”.
The good news was that 90% of the children that have my son’s condition will eventually recover and the recovery will be 100%. In other words, he would go home and grow up and this event would have no long term effects on his health. We were relieved to hear it.
“But what’s the bad news?” I asked.
The Doctor lowered his voice a little and said,
“The bad news, is that the other 10% that do not recover, die. No exceptions, either he recovers fully or he will eventually die. At some point, if his body does not take over the proper intake of oxygen, the extra oxygen we are now using to keep him alive will saturate and poison him. It’s not like he can go home with a breathing machine. Either he recovers or he never goes home. Do you understand what I am saying?”
That is bad news. It’s devastating news. Even a 90% chance of life means a 10% chance of death. Oh God, Oh God……
We asked a few more questions. The Doctor was incredibly patient to answer us and explain what they were doing to help and why. On another level, this Doctor had just informed us that our son might die. But he was so gentle and reassuring. He exuded compassion and patience, and the fact that he had been so caring towards us made us both want to cry.
Over the next few days, I spent most of my waking hours at my son’s side. Some days he was stable, but other days were filled with machine alarms and nurses scrambling in and out of his room to sustain his life. I can’t even put into words the stress filled emotions that swarmed us in those moments.
When my wife and I weren’t in his room, we would wander the large hospital campus. It was huge, filled with children facing the most serious medical conditions. The entry way was filled with an amazing display of colors and children’s artwork. It reminded me of the sort of thing you’d see at the entrance of a children’s museum. But there was a certain amount of dread and sadness that filled the air. You’d see families, silently strolling with downcast faces. Children in wheel chairs, others walking but with no hair and a pained expression. Sometimes uncontrollable weeping was heard, but not as often as I expected. Places like this shouldn’t have to exist.
Other times, my wife and I would escape to a nearby sandwich shop and just talk. We’d talk about the what ifs. What if he doesn’t get better? What will we do if he dies? What will I say to our kids? What if my heart never recovers? What if?
The waiting was the hardest part. Waiting to see him again. Waiting to touch him and sing him another song. Waiting to hear if the new treatment was working. Waiting to hear if they had decided on a blood transfusion. Wait, wait, wait. There was nothing we could do, but wait. So we did.
Days turned into a weeks. Weeks of life on hold. Weeks of little sleep and lots of coffee. Weeks of tears and of friends simply loving us, by being there and sharing the time as we waited.
There was nothing we could do, but wait. So we did.
I can recall almost every detail that occurred after my youngest was born. I can still recall the delivery room, the feel, the smell, the lighting. I remember how relieved we were when my youngest son was finally born. He was beautiful, tiny…yet fully formed. His face looked just like mine, only smaller and with a full head of blazing red hair. The nurses went gaga over him and his hair and they quickly extracted him from my wife’s arms to do his APGAR testing.
As they did their few tests, the nurses were amazed…I heard the one nurse comment that she’d never scored a baby a perfect ten on their APGAR tests, but if she did, it would be my son. Whew…he really was a beautiful, healthy baby.
At this point, the nurses took him to the nursery to finish up some final tests, clean him, and dress him to bring him back to his mom and myself. They assured us that he would be brought back in twenty minutes. We kissed him goodbye and waited anxiously for him to return.
He never did make it back to the delivery room.
After 20 minutes, a concerned looking nurse stopped back to let us know that they were a “little” concerned because his oxygen count was well below normal. She said not to worry, his skin looked healthy and they were getting a new machine to test him on. They assumed the machine was malfunctioning. But the second round of tests confirmed that my son’s lungs were malfunctioning, not the machine.
He was only getting about half the oxygen he needed to survive and they immediately put him on breathing treatments.
At this point, we still weren’t sure if we should be concerned or not. We were told that sometimes this can happen, as there is a valve blocking the lungs in the womb, that should open up after birth. But in my son’s case, it hadn’t fully opened up. In most cases, oxygen treatments would allow the body to correct itself, the valve would open, and normal breathing would ensue.
I was told to go home and get some sleep, so I did.
Phone Calls in the Night
I had been asleep for a few hours when the hospital called. My son had caught a deadly virus (probably from the IV inserts) and was now fighting to even maintain 10% of his oxygen level….he was fighting to stay alive, he was maybe dying. They didn’t know, but they were about to transfer him to the local Children’s Hospital so that he could receive the best care possible. So without his mother or I, he was whisked away at 3 in the morning, by ambulance, to the new hospital.
This is when darkness falls. I am bleary eyed for lack of sleep. I am alone, driving at night through the city. When I arrive, there is a huge institutional sized building and parking garage. I quickly park and run to the front desk. I am informed my son is a few floors up. I jump in an elevator to be with my dying son. Is he really going to die? Am I still dreaming or is this now my life? I snap out of it as the elevator door opens and I’m met by a caring doctor and nursing staff. They warn me that I am about to enter the NICU and that there are dozens of babies with all sorts of conditions. They ask me if I will be ok to witness these things? Yes, I answer. Good, they explain that they’ve had many fainting spells of parents who are overwhelmed at the sight. I brace myself and prepare for the worst.
I enter the NICU….to my left a young baby is having heart surgery. I walk to the next room where there are incubators full of premature babies fighting to grow and to live. I breathe deep, I want to cry, and I don’t really want to see….but I must. He is mine and I want him to know that he is not alone. That I love him and want nothing more than for him to live….please live, please just live.
It’s an awful and beautiful sight at the same time. Awful, because he has over 10 different IV’s and monitors hooked up into his body. Beautiful because he is still alive.
As I enter they are switching an IV that is infected and now putting an IV into his toe. I cringe, I fight back the tears. And I look over into his crib.
There he is.
Small, fragile, beautiful.
Heaving his little chest, struggling to breathe. The nurses tell me he’s the most beautiful baby they’ve ever seen. And he is…light pink skin and that bushy red hair. I reach out and stroke his hair and begin to sing him a lullaby. I stay the night until his breathing stabilizes and go back to visit my wife.
As I exit the hospital it is now early morning. The city is alive with activity. And it hits me how normal it all seems. But life has become anything but normal. I’m only a few hundred yards from where my child is struggling to stay alive, but nobody seems to notice it. The radio is reporting on a Space Shuttle that has blown apart on re-entry. A tragedy to be sure. But my tragedy is not yet resolved, and only friends and family even know about it. Strangeness surrounds my over caffeinated mind.
I arrive to the hospital where my wife is to be released. I help her to the car. But though we arrived to deliver our son, he is not with us. We walk out silent, empty armed, and heavy-hearted.
We make it home before we weep in front of our apartment. The frailty of life has found us and we are staring into the abyss. These are the days that you wished God actually answered prayers a little more clearly. But no answers come, no healing occurs, and we resolve ourselves that this might not end the way we want….and we cry some more.
One of the reasons Young Life has been so successful, are its leaders. Young Life seems to have a wide variety of leaders, mostly college aged volunteers, who are able and willing to befriend teens and win a hearing for the gospel.
When I attended club for the first time, I expected to be bored and preached at…I expected it to be a lot like my church youth group. I was wrong. We sang songs from top 40 radio. They ran funny skits that got us laughing. I was genuinely greeted with warmth and made to feel like I mattered. I later found out that Jim Rayburn, Young Life’s founder, had said “It’s a sin to bore a kid.” His philosophy was that Christ and his gospel was exciting, therefore club should be fun and exciting too.
So far, there’s nothing really wrong with making teens feel welcome, singing songs, and keeping kids from being bored. But from these experiences, Young Life leaders (often unpaid volunteers) use the club setting to befriend teens and share their version of Evangelical Christianity.
Another aspect of Young Life club is the “sell” for teens to attend a Young Life camp. Often times it is pitched that the trip to camp will be the “best week of their life”. The hype factor is high, and it wouldn’t be a stretch to say that many leaders viewed club as a way to convince kids to go to camp. Young Life camp itself was pitched for its many amazing activities, the water slide, the sailing, the mountains, etc….of course, the open secret was that it would be a great week to hang out with members of the opposite sex. I know from personal experience, and I’ll just leave it at that….
Behind all these coordinated efforts is your friendly neighborhood Young Life leader. As I got further involved with Young Life (first as a campaigner and then five years as a volunteer leader), I saw that there is a lot more behind that smiling face than meets the eye. I don’t share this to say all Young Life leaders are like this (they’re not), but to give folks a better idea of some of the things I saw that concern me about Young Life.
Young Life-High School Confidential
My first year in college I continued into Young Life leadership. I would meet weekly at our area director’s home for leadership meetings, attended by all volunteer and staff leaders for our county. It was during this time that my view of Young Life began to shift. As a campaigner and camp attendee, I was always amazed at my leaders. They were funny, yet could open up about the important issues in life like God, sex, and relationships. They always seemed to have some insight and were always pointing me back to Jesus and the Bible as my source of wisdom for life.
An almost constant topic was whether or not I was engaging in daily quiet times. Quiet times for Young Life leaders were like water for fish. “My First 30 Quiet Times” a small booklet by Ty Saltzgiver was almost always the first quiet time booklet given to new campaigners or campers that had decided to give Jesus a try.
Imagine my shock upon learning, that my Young Life leader in High School would go months without ever engaging in this spiritual discipline. In fact, it was very common to hear leaders confess that they had trouble keeping up with this practice. One that they so readily commended to others. But this is small in comparison to my next shock wave….this same leader later confessed that they had sex with someone they had met in town. Not only had they engaged in sex before marriage (something they consistently preached against) but they had sex with someone who was married. So now adultery was in the mix….
I asked them if the area director knew about their sexual foray with another man’s wife. They replied that they had confessed everything to the area director, but nothing of much consequence was done other than to acknowledge that what was done was wrong. What was even more confusing, is this same club had made a Young Life leader confess and then step out of leadership for getting pregnant. Again, I don’t know if it was sexism or circumstance, but there seemed to be no rhyme or reason for making one leader step down and the other continue. Above all, it was hypocrisy to be telling teens that the Christian life was exciting and worth doing, when the main man selling this product wasn’t even attempting to practice what he preached.
This is the same leader that was organizing and taking almost 100 students from the local high school to Saranac Lake for a week. This is the same leader that was taking teens cigarettes, throwing them out, and chastising them for smoking. Were they an incredibly likeable person…yes, without a doubt. But I look back and question whether this person should ever have been around young teens during this time in their life.
Does it make all of Young Life bad or cultic? No, of course not….but it is something to consider. Behind the smile of that Young Life leader may be a world that betrays the message they proclaim. And to parents, how well do you know the people that will be leading your children for 24/7 at your Young Life camp?
I was especially interested, because this church is not too far away from where I live.
You can view the KATU news report here: