“Heartiversary”

One year ago today Jonathan had his first open heart surgery (OHS), the Norwood procedure. It is one of the most complicated, of the “standard” surgeries performed for CHD (congenital heart disease).

Jonathan was born on Friday 7/21/17. His Norwood was scheduled for Wednesday 7/26/17.

With our middle boys still being so young (one year and three years old at the time) we couldn’t stay at the hospital full time with Jonathan. It hurts your heart as a parent to feel like you’re having to choose between your children. Our oldest, Ethan was staying with grandparents. Any time we were at the hospital with Jonathan we felt terrible that we weren’t with the other boys, then when we were with the other boys we felt we had abandoned Jonathan alone at the hospital.

On the evening of Monday 7/24/17, after a rough day, we received a phone call informing us that Jonathan’s surgery had been rescheduled for the following morning. I was incredibly upset. The day had not gone as planned and I did not get to spend much time with Jonathan due to meeting with various medical teams and my other kiddos having struggles. I thought I was going to have all day Tuesday to spend with him before surgery on Wednesday. At this point Ethan hadn’t even gotten a chance to meet him yet. I was exhausted and emotional but I called my mom who managed to gather Ethan then picked me up so we could visit Jonathan.

We got there as quickly as we could, arriving to the Cardiac ICU a few minutes before 9pm. I was so relieved that Ethan was able to meet his baby brother even if he wasn’t able to hold him. It broke my heart to think of Ethan never getting to meet Jonathan, and Jonathan barely experiencing being held in the loving arms of his family if he didn’t survive surgery. 20280325_10154978969621973_2636092742746470101_oWe snapped a few photos and then his nurse laid him in my arms so we could get in some comforting snuggles. Ethan sat on the couch quietly with his iPad while my mom and I whispered in hushed tones as I gently cradled Jonathan as best as I could with all of the wires and tubes attached to him.

Within a few minutes the unit secretary entered the room to let us know that we would need to leave as no visitors outside of parents were allowed after 9pm. I quickly told her that I was Jonathan’s mom and the visitors were his grandma and my 15 yr old son. I also explained that Jonathan’s open heart surgery had just unexpectedly been moved forward to first thing the next morning and this was the only time Ethan had gotten to see his brother.
Nope, it didn’t matter. No exceptions to the rule, we were informed.

That is all I have to say about that.


The next morning I remember shivering. It was the kind of cold you feel when your body is nauseous and shaky from sleep deprived exhaustion. The emotion was so thick Danny and I could barely speak. I felt angry at the world.
We were fortunate to have all of our boys’ grandparents pitch in to care for them so that all three were safely cared for while our hearts were laid open on the table with Jonathan’s.
Prior to surgery one of my sisters was able to come to the hospital and meet Jonathan for the first time. I choked on the lump in my throat as I watched her eyes mist as she stroked his soft head. Then a couple of people belonging to the prayer ministry team of a church that had been praying for us brought communion and prayed over Jonathan.

We are forever grateful to all of the people who surrounded us in support and to the medical team who cared for Jonathan. Jonathan’s surgeon Dr Jaggers is a giant among men. As a nurse I have spent time with surgeons and frequently they are brusque and don’t generally give you the “warm fuzzies.” This is not a bad thing. Surgeons have to make very complicated life and death decisions, oftentimes with only mere seconds to do so. Many times I’ve heard others complain about surgeons having a “God complex” but quite frankly, that’s not a bad thing to have in someone who is literally holding your life in their hands.

Dr Jaggers is incredibly intelligent and one of the top in his field. Danny and I were not expecting to sit down with this soft spoken man whose kind, blue eyes spoke volumes. We were profoundly touched by his gentleness with us.

We had a few moments to hold Jonathan before the anesthesiology team came for him. IMG_1137 (1)It’s odd the things that one remembers clearly opposed to the things that are a fuzzy blur. We were able to walk with him to the doors of the OR. I don’t remember if it was the anesthesiologist or nurse anesthetist, but I clearly remember handing Jonathan over to this man who had enormous arms. It seemed strange to see this burly armed guy so gently cradling this tiny baby. I remember studying the tattoo on his forearm but for the life of me I can’t remember what it was. When he looked at Jonathan’s birth date he chuckled because it was nearly the same as his: 7/21/17 vs 7/21/71.
Oh good! A connection!
I always feel reassured when medical staff make some type of personal connection. I swear his name may have even been Jon. It’s terrible that my memory is hazy because this anesthesiologist has cared for Jonathan multiple times since then, you’d think I would remember.

Danny and I kissed our sweet little boy goodbye and then he was whisked away. We stood in the middle of the hallway staring at the closed OR doors for I don’t know how long. I couldn’t look at Danny because I knew we’d both burst into tears. We broke from our trance when another set of doors opened and a team came zooming in with a new patient. I immediately recognized it was a freshly born baby from the maternal fetal floor. We squeezed ourselves against the wall as they wheeled the infant bassinet into the very same room that had been Jonathan’s first room in the CICU days earlier.

I briefly peered at the precious  newborn rolling by. He had a beautiful head of dark hair.  I immediately thought of the baby’s mom up on the maternal fetal floor recovering from delivery so far away from her baby. I said a prayer for her as my heart ached knowing how I had felt in the same situation just those few days before. I wished I could reassure her that her little one was ok. I wanted to tell her that he wasn’t alone and offer to sit by his side until he could be in her arms. In that moment little did I know that this baby also had HLHS and that his mom would become a cherished confidant as we travel the “heart mom” journey together.

Jonathan’s OHS was anticipated to last eight hours. I knew I couldn’t sit in a waiting room for the next eight hours. Danny knew he couldn’t not sit in the waiting room for the next eight hours. We hugged goodbye. He sat in a room down the hall from our baby praying and meditating on God’s word. I returned to the house we were staying in and shut down.

I was immensely relieved when Danny called to say that the surgery had been completed a bit earlier than expected. I immediately headed for the hospital and of course at this point I was ready to spend every possible second there while Danny was ready to get a break from it.

We knew from pictures we had seen of other babies what to expect Jonathan to look like following his open heart surgery. However nothing can truly prepare you for the sight of your intubated baby with an open chest. I promised myself I wouldn’t cry while I was with Jonathan yet tears automatically sprung to my eyes. The nurses were upbeat and told us how great he was doing but the tears still fell.

 

From that point forward I don’t remember much of the day. I do remember the nurses caring for him were amazing and completely reassuring that it was ok for us to go home and they would be with him all night. It was gray and drizzling outside in the waning light. On the way out of the hospital I stopped at the nourishment room for crackers and tea. My heart breathed a sigh of relief for my little “lion” as well the little “acorn” across the hall whose mom was now holding him.

Happy Birthday mighty OAK!

Happy Heartiversary Jonathan!

The Waiting

So this thing happened: I had a baby, then I blinked and now he’s having his first birthday.
Only,  I didn’t blink. I didn’t close my eyes once, not even to pray. It’s peculiar how the memories and details of this time last year are fresh; they are imprinted in my mind as if it was last week and yet at the same time I feel as though three lifetimes have passed since then.

When this journey began I committed myself to documenting it, knowing that we would need a supportive community around us and believing that maybe someday in the future it would be helpful to someone else going through a similar experience. I failed in that endeavor. I sat down a few times with the intention of putting my thoughts and experiences into words on a screen, and even managed a couple of drafts but for the most part, I couldn’t. I struggled to separate the joy from the sorrow, the hope from the fear, and my perception of reality from the truth of reality.

The first several months after Jonathan was born, were nothing but sheer exhaustion. I mean life is like that when you can’t close your eyes. Then the stresses of the rest of our life outside of a CCHD baby began to snowball and catch up with us as we faced the typical as well as some unexpected challenges in our daily life. Most days I barely form coherent thoughts let alone intelligible sentences to my children and husband. I have failed to keep in touch with even my closest friends and family members. My phone is currently (ie always) painted with those little red bubbles that let you know how far behind in “being caught up” you are. At the moment I have 98 unread text messages and 72 missed phone calls. I won’t even tell you how many thousands of new emails I have or how many apps are reporting multiple updates. Sometimes for comic relief I like to screenshot it so I can send it to my extremely “Type A” husband. He does not find it amusing.

Here we are now a year after Jonathan’s birth and we’re still waiting to blink, to close our eyes and maybe even take a little rest. It seems though that every time we start to relax; to let our guard down, something else happens. Eventually I would like to recount all these pieces of the journey, at least to the best of my memory, which seems to be fairly shot these days. For now though we’re still in that rough trench, hunkered down waiting out the dark. We can see the inky black starting to fade to gray but it’s hard to determine if it’s truly daybreak or simply the artillery explosions lighting on the horizon.

There have been frightening and desolate moments when our hearts fleetingly thought all hope was lost but we have never been without our faith or belief in focusing on the positive. I wish this meant that sunshine and rainbows always shoot out of our mouths when we speak. The truth is that sometimes you’re in a dark place and there’s nothing you can do except exist in that space. It doesn’t mean we’ve given up or are dwelling on the negative. We don’t slough around depressed, devoid of laughter and enjoyment of every day moments.

It means we’re hesitant. We hesitate to brim with excitement over, well, anything and everything. We hesitate to make plans, to answer the door, to go out in public. We hesitate to take on any situation or activity without thinking of every possible outcome and creating a Plan B, C, and D. We’re tired. We overthink small decisions and moments. We feel lost. It seems like we’re always waiting for the other shoe to drop….and while we’re doing this it feels like life is on hold. Which is a strange paradox because life is simultaneously moving forward at an alarming pace. It is anything but on hold.
Did I mention we don’t sleep?

We are in a dark place and that’s ok. It is okay to be in a dark place.
This is a concept I’m slowly coming to understand. In my life I have always been one to grieve and move on. I’ve always felt it’s acceptable to be in a dark place for a day or two but then it’s time to get up off the floor, deal with your issues, and move forward. What I am learning is that it is not  wrong to be in a dark place for a prolonged time. It doesn’t necessarily mean you are stuck dwelling on the negative and feeling sorry for yourself. Sometimes living in a dark place is a part of the path. After all, seeds cannot germinate without first being in a dark place.

We’ve been in this trench for about 18 months now, and that makes people uncomfortable. I get it. I’m not comfortable with it either, and I for sure wouldn’t be comfortable with any of the people close in my life being here for this long.

Remember the movie Under the Tuscan Sun? There’s a line from the movie that goes:
“You know when you come across one of those empty shell people, and you think ‘What the hell happened to you?’ Well there came a time in each one of those lives where they are standing at a crossroads… someplace where they had to decide whether to turn left or right.”

I  fully subscribe to the theory of choosing to be an empty shell person (or not an empty shell person); choosing to be happy or unhappy, choosing to stay in the dark place or walk out of it. What I didn’t ever consider before was that sometimes you’re an “empty shell person” not because you made a choice to turn right or left but because it is simply the season you are in for the time-being.
I feel like one of those empty shell people but it isn’t because I’ve made a choice not to move on, it is simply where I am for the moment. I don’t want to be here. I don’t like the person I am while existing in this hard place (the dark/wilderness/desert/trench whatever you want to call it). This person is so foreign to me, it’s not who I am; who I know myself to be.
I know I won’t escape this place unscathed, you can’t live through it and not be changed as a result. Yet I am beyond ready to be free of it and the person I am in it.
A year and a half of walking through these perceived traumas. Is it over yet?

The children of Israel wandered in the wilderness for 40 years. Forty years.

I used to shake my head at this story and think “if they had just listened, if they had just had more faith then they wouldn’t have been punished with the wilderness for 40 years.” We are human so we make mistakes. Even when we listen and obey, have all the faith in the world, and do everything perfectly (which we can’t), terrible things still happen. We still end up in the wilderness; in those hard, dark places. What I find particularly interesting about waiting in the wilderness is God’s presence is so clearly evident. Much more so than in many other places. In the wilderness He led  as a cloud by day and fire by night. He fed His people with manna and quail. He quenched their thirst with water from a rock. Their clothes did not wear out nor did the sandals on their feet.

I have a favorite pair of flip flops. They’re actually my only pair and I’ve had them for nearly 10 years. Instead of wearing out they have become more comfortable over time and don’t look old or broken down. Hence why they are my favorite/only pair of flip flops. A few days ago on an outing with my “middles” I blew out my flip flop. I was surprised, and not super thrilled to have to walk to the car with one bare foot. Surely it had to be a sign right? What the heck did it mean?

I do believe in signs.  I believe God can use every day happenings to speak to us. Ok God, what are you trying to tell me?

I thought of all of the the things shoes and the soles of our feet symbolize. I thought of all the scriptures in the Bible of sandals relating to God’s provision and holiness. Maybe God is reminding me that sometimes we unknowingly tread on holy ground. Maybe He’s telling me that the time in the wilderness is coming to a close. Maybe he’s reminding me that Jesus’ heel was bruised but the enemy’s head was crushed. Maybe he’s telling me it’s time to put on new shoes and get on a new path. This is where I shrug my shoulders, lift my hands and say “I don’t know.”

What I do know is that last week my first baby turned 16, and this week my last baby turns one. I am blessed beyond blessed.

I recently explained our medical shenanigans to someone. When I share our story I often feel like I have to make an excuse because I’m sure people must think I’m exaggerating or making it up. I made a comment to the effect of being unlucky from a medical standpoint. The woman I was talking to turned to me and said “You think this is unlucky? All of your children are alive.”
I had nothing to say after that.

In the past year I have watched friends lose their children to death. It is unspeakable. I can only relate in the sense that I know how it felt in the moments I thought my baby was dying. It is not a club anyone wants join but it is filled with these remarkable humans who even while they have stumbled to the ground and are groping blindly in the dark to find the path again, are willing to take the hand of another who has fallen and help them to reach the path.

My own pain and terror of the last 18 months has been offset by the generosity of spirit that has often come from the most unexpected people. I keep a notebook with a list of people to send thank you cards to. There are several hundred people on this list, and some of your names I don’t even know. Some of you will never know how much your facebook comment or text message in a moment of despair touched my life. Thank you for checking in on us even when I never responded. Thank you for showing up when I needed someone the most. Thank you for feeding us. Thank you for caring for my children. Thank you for sending gifts to people you’ve never even met. Thank you for helping with overwhelming bills. Thank you for praying because for a long time I didn’t even know how to do anything more than whisper “Jesus help.” Thank you for not abandoning us or forgetting us here in the dark.

Happy Birthday precious Lion

Silver Linings

There is no way around it. Life can be damn hard and the only way you can get through it sometimes is to sludge through the blood, guts, and crap all the while keeping your eyes open for the silver linings and trusting that God will use the hard stuff for a greater purpose.

I turned down all of the scholarships offered to me to run track and cross country in college in order to focus on my studies. At the time I didn’t think I could juggle the intense college athlete schedule and maintain the grades necessary to get into a business school. Not running meant that I would need a high paying summer job to offset the costs of not taking a scholarship. The best paying summer job in my home town at the time was working at the beef slaughter house. They hired local teens in the summer. I helped fund my education by working in the slaughter house the first two summers of college. My summer vacation was no vacation at all but it kept me motivated on my studies as I knew this job would be the alternative if I failed at college.

Man, I have so much respect for the people who work at the beef slaughter house because that job is hard….Really hard…Inconceivably hard. It was so physically demanding that there were times after my shift’s completion that I would sit at a lunch table in the cafeteria attempting to salvage whatever energy was left in me to complete the “arduous” walk to my car.  I earned every cent of overtime pay in every second on the job. It was tough to see a finish line but I would count down the days, no, I actually remember counting down the hours I had left in the summer until I could go to college and live the “easy life.”  I couldn’t wait for those summers to get over. I would rise at 5 am and by 6am start the incredibly physically exhausting job of throwing 50 pound pieces of meat every three seconds for eight hours. Then I’d go home, change out of my blood soaked clothes, clean up and take a nap until 5pm when I would eat some dinner and wait for my silver lining.

In the midst of literally trudging through blood, guts, and crap I struck up a friendship with a man who owned a bass pond. Not just any bass pound, a bass pond with eight pound bass. An eight pound bass in Colorado is the fish of a lifetime. At this pond it was common to catch 75 fish in a day. This new friend knew I liked fishing and I think he could see a little bit of himself in me as I was on the processing floor working my tail off everyday. One day early in my first summer he invited me and some friends out to his pond to fish. IT.WAS.INCREDIBLE. I thanked him profusely and when we left and he said I was welcome to come out any time. For those who don’t know me, I have tendency to overdo things. I fished that pond every single night with my friends for those two summers. That bass pond was my silver lining.

It is with this current situation in life that I again find myself up to my waist in blood, guts, and crap. While Jonathan’s tumor biopsy results were inconclusive they were able to get enough of the tumor tissue to ascertain that it is more than likely neuroblastoma.
Cancer. Breathe Danny.
There are two types of neuroblastoma. A non-aggressive one that resolves on its own and an invasive one that attempts to infest every living tissue in the body. The oncologist thinks Jonathan has the “good cancer” because of his energy and overall cheerful disposition. If it were the “bad cancer” he would be in constant pain as the beast leached itself into every crevice, organ and bone in his body. This week Jonathan will have an MIBG scan which will help to determine if the tumor is indeed made up of neuroblastoma cells and if those cells have invaded any other places in his body.  Holy cow am I really discussing and praying for good cancer?

At times like this one wants to place blame. I blame my pastor and myself.  A couple of years ago he preached about giving yourself and your children up to God. At the end of the sermon he implored the congregation to give up everything to God. However; he did advise that anyone who genuinely wished to do this better be certain because God may listen and change your life for his purpose. I was like a bass in that pond.  I gave EVERYTHING up to God. I started praying nightly for God to use us for his purpose. Now here I am watching my son fight for his life and EVERYTHING is in God’s hands. There is nothing we can do. This is entirely in God’s hands.

Mark 9:14-27 tells a story of a man taking his possessed son to the disciples and the disciples not being able to drive the demon out. A commotion ensued and Jesus asks what is going on. The boy’s dad tells Jesus about his son’s miserable existence and tells them that the disciples were unable to cast the demon out.   In my mind I see this man on his knees holding his son with his hands together begging for Jesus’s mercy. He pleads, “If you can do anything, take pity on us and help us” (Mark 9:22). It is at this point in the story that I feel Jesus offers a scoffing retort in “If I can?  Everything is possible for him who believes.” The next verse is my life. The dad says “I do believe; help me overcome my unbelief.” Jesus then heals the boy thus casting out the dad’s doubt.

Well Jesus, here we are in the blood, guts and crap. We still love you, use us for your purpose. I know your will is different than mine and I am so appreciative of the 10 months I have gotten to spend with Jonathan. I know I will never understand your will or why you allow evil things to happen, but I know you will use it all for good.  I know Jonathan is your son and I know my love for him pales when compared to your love for him, but please don’t take him from us. I too, am on my knees begging for you to take pity on us, pleading for a miracle. Please heal Jonathan and help us to rise from the blood, guts, and crap. May the silver lining here be that our story offers hope for others, may you use it for a greater purpose. I do believe; help me overcome my unbelief.

Where Feet May Fail

Jonathan was diagnosed with a tumor.
It was inadvertently discovered during a CT scan of his heart…Gauging from the response of the medical team it appears to be serious

Jonathan’s Facebook Page

When I was seven I was playing on a tire swing in the neighbor’s garage. The rope was attached to the ceiling.  My friend and I were taking turns pushing each other when his 15 year old brother walked in and decided it would be more exciting if he pushed us. Eager to impress, I went first. He pushed with the ferocity of a teenage boy. About four pushes in, the rope detached from the ceiling while I was easily four feet in the air. I violently crashed with my back landing flat against the cement floor. As pain shot through me I realized I couldn’t breathe. I crawled, sprawled and strained across the dusty floor trying to get one, just one breath. I thought surely I must be dying. My friend’s brother said “get up you baby. You just got the wind knocked out of you.”

Jonathan was diagnosed with a tumor.

It was inadvertently discovered during a CT scan of his heart. He had been having some symptoms that with his heart’s unique anatomy could indicate the presence of collateral vessels or an obstruction in his pulmonary arteries. The cardiologist was unable to fully visualize his pulmonary arteries and the extent of the collateral vessels present on the echocardiogram so he ordered the CT scan.  His heart is just fine. Well as fine as the heart of a kid with a single ventricle can be. While looking at the scan, the radiologist spotted a mass she was “deeply concerned about.” Another sedation and MRI later we were informed of the presence of  an acorn sized tumor. Gauging from the response of the medical team it appears to be serious. We still need a biopsy to determine if it is malignant or benign but but we are hoping for the best and preparing for the worst. If the C word does come out the doctors may have certain limitations to which type of treatments they can use due to his heart. The  good news here is they found it early.

When the diagnosis came in yesterday there I was again, 34 years later crawling around on the musty floor trying to catch my breath. I couldn’t breathe!  I ask, “Why us God? Why Him? Why won’t you intervene?” I think back to Joseph fleeing Bethlehem to save baby Jesus’s life. I think “man if God wouldn’t intervene to save Jesus’s life why is He going to waste time on us?” In my pit of misery I yell out, “I just want to take a damn vacation! I cannot carry this burden one step further.” I bemoan that everyone says “God is good.” I say, “meh, sometimes.”  In the rawness of the diagnosis, my mind, as it often does, jumped to the worst case scenario. That mindset, the Devil’s mindset, leads me to tell a friend that  “when I get to heaven I am going to punch Jesus right in the face.” I proceed to tell my wife that “I have no more fight.” I had a temper tantrum Josiah and Elijah would be ashamed of and they have some real doozies!

Yet this morning on the heels of my wife essentially telling me to “get up you baby, you just got the wind knocked out of you” God has given me the strength to rise. On my mind is the song Oceans (Where Feet May Fail) by Joel Houston / Matt Crocker / Salomon Lighthelm

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

I will call upon Your name
Keep my eyes above the waves
My soul will rest in Your embrace
I am Yours and You are mine

Thank you for being a good God. I am sorry for my actions yesterday.  I need you. My wife needs you. My boys need you. My dear son, Jonathan, needs a miracle.

We don’t know what the future holds. We don’t know what or how the process will unfold. We know that God can heal. We believe God will heal.  It is with this my friends that we humbly ask you for more. What we are asking is completely unfair. You all have given so much with your time, money, effort, meals, and prayers. We know that we can never repay you. We also know that there is nothing we can do or say to let you know how much we appreciate it. We know that without your prayers we would not have gotten this far. So, now more than ever we need prayers for healing, for strength, for faith.

“You restored me to health and let me live. Surely it was for my benefit that I suffered such anguish. In your love you kept me from the pit of destruction; you have put all my sins behind your back.” -Isaiah 38:16-17

Jonathan’s Facebook Page

Sovereign

One year ago today I was told that Jonathan did not have a left ventricle in his heart.  After the diagnosis friends, family, and pastors in attempt to ease our grief and justify our unfortunate set of circumstances said “God is Sovereign.” I thought to myself, I have no idea what in the hell you are talking about. Thanks for nothing! I have never understood sovereignty. It seemed like an easy excuse people fell back on when they had nothing else to say to explain the pain of someone else’s life situation.  Merriam Webster Dictionary defines Sovereign as:

1 a : one possessing or held to possess supreme political power or sovereignty

b : one that exercises supreme authority within a limited sphere

c : an acknowledged leader

When we started this process we toured the cardiac and maternal fetal medicine units at Children’s Hospital. Our “tour guide” was Carey, one of the nurse coordinators for fetal cardiology and the Single Ventricle Program.  We walked past the doors to the surgical unit. Outside of these doors is a waiting room with a number of sitting areas. This room is centrally located and thus you have to walk by it several times a day if you have a child in the CICU (cardiac intensive care unit).

On our maiden voyage past this waiting room with our guide, I noticed a family sitting up front in the three seats closest to the door of the surgical unit. In passing, I made eye contact with the man rubbing his wife’s back in a reassuring manner.  My eye contact seemed to catch him off-guard. His appearance caught me off-guard.   To say the couple looked exhausted is an understatement. The man wore a ball hat, a tshirt and clearly had not seen a razor in awhile. His bloodshot, glassy eyes matched his body’s slumped posture. He looked underweight, weak, and pale. The wife didn’t appear to be faring much better. She wore no makeup and sweatpants. Her hair was messy and it looked like she hadn’t showered any time recently.  I could tell that at one point in life this couple had their crap together and that they were probably a very good looking, put-together couple. What in the hell outside of a heroin addiction could ever cause someone to look like this?  I wondered what type of a path they must have taken to look this bad. I assured myself as I put my own hand on Christina’s back that we would not look that way. “Our path will be easier” I reassured myself.

On the fourth day after Jonathan’s birth he went under the knife. After we handed him off to the anesthesiologist, Christina went back to the home we had rented. She was too tired and sore from Jonathan’s birth to sit around the hospital for the 8 hours Jonathan’s first surgery would take.  In a surgery of this magnitude a nurse comes out every couple of hours to update the family as to how the procedure is going. I found myself sitting in the waiting room in those very same seats closest to the operating room door. Maybe it was my subconscious telling me this is where I was supposed to sit from my first impression of seeing that family three months earlier. Maybe it was the fear of missing an update, thinking the nurse wouldn’t see me in the other clearly visible 22 chairs. Maybe it was me wanting to be as physically close as possible to my son, whose chest was cracked wide open on the other side of those doors.

As I sat by myself I noticed that whenever anyone would walk by, they would quickly look down at the floor and scurry past, trying to avoid eye contact. This seemed to be the unspoken protocol. Why? Because every family in the CICU had quite literally been in my seat and seeing someone in the seat was a distinct reminder that they all had a beloved child in a life or death situation. No one likes to talk about it but many of these situations end in death.  When you’re there, you hear the alarms and see the frantic rush of the staff in those attempts to keep another family’s journey from ending in death.  Looking at the floor and scurrying past the waiting area was simply a way to get through it. Those chairs were scarred with painful memories and the underlying fear of landing back in them again. To not acknowledge the person in those chairs was a coping mechanism, to think that perhaps by playing dumb to those chairs you could go about your day and forget the vulnerability, stress, and peril associated with the fight for life sitting in those chairs represented.

Following Jonathan’s first surgery, days turned to weeks which quickly turned to months. Jonathan battled intestinal infections, seizures caused by a series of strokes, blood transfusions, difficulties feeding among other things. Our other boys struggled through this time too. They dealt with many new faces of various people who babysat them, they were often cooped up with not much room to play. For the boys the stress of the situation triggered behavioral outbursts, difficulty sleeping and even new onset of seizures.  Christina struggled mentally, emotionally and physically. I am a proud man. It pains me to admit that I was not man enough to take this on. I thought I was prepared. I was so greatly mistaken. My body failed as a result of the stress. I battled a shingles outbreak and the physical pain was only offset by the emotional pain I felt from not being able to hold or touch my children or wife for three weeks.  I also suffered an ocular stroke in my eye which left me partially blind in that eye. The doctor said this was something the elderly and chronically ill diabetics suffered from. The underlying cause baffled the doctors who could only point to stress as the culprit.

Four long months filled with 911 calls, ambulance rides, ER visits, hospital readmissions, constant doctor appointments, and five family relocations later there Christina and I sat in those same chairs waiting for our nurse to update us on Jonathan’s second open heart surgery. I make eye contact with a guy and his pregnant wife touring through with Carey.  I think “they’re just a couple of kids, why are they here going through this?” I ponder the question of God’s sovereignty.  It dawns on me that this kid hasn’t learned the unspoken rule of looking at the floor. I rub my wife’s back in a reassuring manner and realize that I am wearing a ball hat and tshirt, and haven’t seen a razor in awhile. My eyes are bloodshot and glassy. My posture is slumped. I am underweight, weak, and pale. My wife wears no makeup and sweatpants. Her hair is messy and looks like she hasn’t showered any time recently. I look at the kid and I can guess what he might be thinking, “what in the hell outside of a heroin addiction could ever cause someone to look like that? What path have they taken to look this bad.” I see him mentally assure himself that they will not look this way. Their path will be easier. I say a quick prayer, God let their path be easier than ours, they are just kids.

Mere days later Christina and I find out Jonathan is being released from the CICU. He has fought like a champion and we are on the backside of his recovery. We decide to celebrate. We are on cloud nine and are going for a long overdue and much needed dinner together. We walk out of the CICU smiling and holding hands. Once the CICU doors open we see yet another family sitting in the all too familiar waiting room chairs. The husband is bleary eyed and the wife clutches a blanket she’s wrapped around her shoulders. I notice the surgeon kneeling in front of them. Immediately we follow protocol and shift our eyes quickly to the floor and scurry past trying not to intrude on the sacred space.  As we walk by we  hear the surgeon say the risk for bleeding out is too great and there is nothing more he can do. We hear the moan and sob that can only come from a parent faced with losing their child.

Life is hard and we went through hell but one year after the diagnosis that changed life as we knew it, I get to go home and hold my son tonight. Tomorrow that could change, but I finally understand;  God is Sovereign.

Lines

Lines are a huge part of my life. Let me explain.

In snowboarding you can sit at the top of the mountain on a powder day and pick your line of descent. You carefully determine where you can gain speed, where you need to maintain speed and where you can launch off of stuff, hucking your body into the brisk mountain air with no regard. When you get to the bottom of the mountain you can turn around while you’re waiting in line for the next chair and see every second of your line carved into the mountain as if were a hot knife in butter. Picking the wrong line can ruin a ride, day, or life.

At work I am constantly working in between the legal lines to keep my loans in compliance while doing the best job I can for my clients while keeping the bank’s best interest in mind at all times. Some loan officers blur these lines in pursuit of attaining their annual goals. This ultimately causes damage to the bank, the client, and ultimately the loan officer as they are almost always fired when they are found out.  Blurring the lines can ruin a career.

A line I am comfortable with is toeing the line of a race start. Gently stepping up and inching your racing flats to the start line and placing them as close to the line’s edge in order to gain that extra millimeter advantage. Oh the exhilaration of waiting on the gun to sound, knowing your hard work and dedication is about to payoff on the race course, is a feeling unlike any other. You know that the pain is coming. You also know that if you go just one percent further into that pain zone, you ultimately will beat 99% of your competitors. Stepping to that line without following your training plan always leads to an unsatisfactory race day.

Then there is my favorite line of all. My fishing line. When I fly fish I am in constant pursuit of the perfect angle of my line. I am continuously taking care of the mends in the line while it is on the water. All the while worrying about the clarity of my line as I try to gently set it down on the water’s surface. I always know where my line is. Not knowing and controlling every possible thing about your line can lead to you spooking a fishing hole and thus scaring any potential fish from biting for an undetermined amount of time.

The common theme is respect the line. Just about every teacher, friend, friend’s mom, girlfriend’s dad, and probably every relative told me that I was always two steps over the line. My stories, my jokes, my actions have always been over the line. I took pride in it and it fed itself. The more over the line the greater my stories became. Everyone thought I was an adventurous daredevil, a rebel, or dare I say an idiot?

Well as it turns out I am none of the above. I am a very, wait for it, calculated planner.  When I was younger I planned my life. In my mind’s eye I pictured myself standing on the line looking forward, never back. The line ahead of me trails off into the horizon. There are bends. There are ups and downs and there is a glowing finish. It is a vision that I have had most of my life. Maybe I saw it on a Hallmark card, a cartoon, or some power point presentation. Either way, it really got stuck in my head.  The line is very smooth because it is very calculated. Watch, I would graduate high school, leave Fort Morgan and graduate college, move to the city, get a job, then  get my MBA while moving up the corporate ladder all the while enjoying life, making very calculated investments. I would push one to two steps off the line constantly weighing the risks and rewards of straying from my predetermined course. Sure there would be ups and downs but if I stayed close to the line things would ultimately be fine. It sounds ridiculous but I planned every single step of my life. Work and travel, then settle down and get married at 35. I would have kids, work until 55-60 when I would take an early retirement and retire with my wife to the mountains while my kids finished high school. Silly right? It gets so much worse. I had my death and my funeral planned. No joke! Always living today while preparing for tomorrow. Constantly weighing the risks and rewards. I literally thought if I just keep my head down and mind my own business nothing bad can happen. All of it calculated and connected by my predetermined decisions. My path. My life. My line.

Our family’s current ordeal has caused me to doubt past decisions, doubt my reality, doubt myself and doubt my future. The “what if” game is a trap. It leads you into a very deep, dark place.  The “woe is me” game is even worse. At the end up the day when you are finished playing you just feel worse and nothing has changed. This leads a person nowhere and nothing good comes of it. When I finished playing these games, I looked down and I could not find my line. It is gone. I am off course. Who the hell is manning the ship and how am I going to make that funeral if there is no line to follow? Come on people. Back to the common theme, respect the line!

You realize I am the epitome of a fool. All of those years of planning could never prepare me for what God has planned for me. I was never going to be allowed to follow my own path. The fact that I called it my path should tell you what type of an idiot I was. I was never on my path. I was on God’s path all along. What the heck was I thinking? My line trumps God’s plan? Think about how silly that sounds.

All throughout the Bible it reads of proof of my ignorance.

  • Many are the plans in the mind of a man, but it is the purpose of the Lord that will stand. Proverbs 19:21 ESV

  • Trust in the Lord with all your heart, and do not lean on your own understanding. Proverbs 3:5  ESV

  • The heart of man plans his way, but the Lord establishes his steps. Proverbs 16:9 ESV

  • For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11New International Version (NIV)

  • Whoever isolates himself seeks his own desire; he breaks out against all sound judgment. A fool takes no pleasure in understanding, but only in expressing his opinion. When wickedness comes, contempt comes also, and with dishonor comes disgrace. The words of a man’s mouth are deep waters; the fountain of wisdom is a bubbling brook. It is not good to be partial to the wicked or to deprive the righteous of justice. … Proverbs 18:1-24  ESV

So what does all this mean? Some may think it means you can throw caution to the wind and release yourself of cares, responsibilities, and consequences because if it is meant to be then it will happen by God’s will. That is a very tricky slope and it could end you up on the wrong end of any line. Maybe a prison photo line.  Maybe the bankruptcy line. You get it. Listen, I cannot tell you how to live your life. I cannot tell you how to make decisions. I will tell you what I am going to do. I will trust in the Lord in making my decisions going forward. This is a concept my wife is completely familiar with as she employed this tactic most of her life. She has been praying on decisions most of her life. No only praying but not acting until she receives a response. God does not necessarily answer when we ask the first time. This is especially though for me. What if I am told I can never get that cabin? Why would I decide this is my new course of action? History, the Bible, tells us my forging ahead with my line was wrong as:

  • I will instruct you and teach you in the way you should go; I will counsel you with my eye upon you. Psalm 32:8  ESV

  • If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him. James 1:5 ESV

  • For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. Jeremiah 29:11 ESV

  • And your ears shall hear a word behind you, saying, “This is the way, walk in it,” when you turn to the right or when you turn to the left. Isaiah 30:21 ESV

  • Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths. Proverbs 3:5-6 ESV

As I watch my brave son who had more than 20 lines connected to him to keep him alive, make gradual progress and get line after line removed I am reminded to respect the line. I will adhere to my running, fishing, snowboarding, and working lines because those are necessary to be successful at my job and my hobbies. I am going to disregard my line. It was foolish. Here is a thought, maybe God allowed this to happen to get me off of the line and onto his line.  I won’t know until the funeral. I hope God does not have that planned in my near future.


Walk As Lions

I am at a loss as to how to even attempt to put into words the emotions and events of the past week. At moments, the fear and terror have been overwhelming and it’s easy to forget the joy and hope of a brand new life coming in this world. There is no “good” reason why all of this has happened and even through my distress at the fact that God has allowed it to happen, He has also been faithful in carrying Jonathan and our family thus far.

This past week has been long after going through a difficult hospital experience on my side, leaving behind my precious little one as I discharged from the hospital, watching him undergo open heart surgery and starting recovery, attempting to balance my time between all of my children in a post-partum state while the world continues to move forward requiring me to deal with all of those little life pieces that don’t stop just because my own heart no longer feels like it is beating inside me.

Yesterday evening I trudged out of the hospital after a couple of hours of standing at Jonathan’s bedside. I moved slower and with more discomfort than one week prior at 9 months pregnant. After making it through a pregnancy with zero swelling, last night my ankles were non-existent and pain stabbed and ached through my entire body.

It was nothing though compared to the pain and ache of the longing to hold my child as I hovered over him watching him breathe, watching for any sign of his pain or recognition of my presence. Both the doctor and nurse on duty had explained there was a possibility by tomorrow afternoon (today) I might be able to hold him. I felt cautiously optimistic, holding excitement and hope at bay as I didn’t think I could bear the disappointment and heartbreak if it ended up taking a few days longer.

IMG_1138The guilt raged within me that this precious babe should have continuously been in my arms being snuggled and loved into this world with his brothers playing cheerfully beside him and not relegated to an hour or two a day of his mom standing by his bed holding the tiny little fingers of the only part of him not covered by tubes and wires.

IMG_1139

As I drove home I thought about the fact that I haven’t even known how to pray and I have been relying on the prayers of others. I felt discouraged within myself that I haven’t been able to adequately pray for my children or take any steps forward in faith. Then this song came on the radio and it was like God was speaking directly to me over the fact that I couldn’t quiet my own soul enough to hear His voice.

Today we live, today we breathe
Today we know that we are strong when we are weak
Today we trust, we overcome
Take every chain that kept us slaves and throw em’ off
We’re not waiting for permission
We defy our inhibition
Like our middle name is “fearless”
Unafraid
If we’re gonna fly, we fly like eagles
Arms out wide
If we’re gonna fear, we fear no evil
We will rise
By your power, we will go
By your spirit, we are bold
If we’re gonna stand, we stand as giants
If we’re gonna walk, we walk as lions
We walk as lions
Today is ours, it’s always been
Before we face the fight
We know who’s gonna win
We live by faith and not by sight
We don’t want safe and quiet
We don’t wanna run and hide
This is not an intermission
It’s our time, not gonna miss it
You’ve already called us fearless
Unafraid
The battle has been won
We know you’ve gone before us
So, we take it hard in faith
With every step we take
We know we’ll rise victorious

Jonathan is doing phenomenally well! Those were the words of his nurse last night who has eight years of Cardiac ICU experience. The doctor yesterday placed him at the 90% level of how well kiddos do after the Norwood procedure. God has a magnificent purpose for his life. The prayers of believers every where are holding Jonathan (and us) up through this. We will make it through to the other side. We will walk as lions.

Saul and Jonathan were beloved and pleasant in their lives,
And in their death they were not divided;
They were swifter than eagles,
They were stronger than lions.
2 Samuel 1:23