Nissim

My entire life I have heard people say that they don’t believe in God because of science. I have heard others say if only God would perform a sign/miracle I would believe. Then they wait for a shooting star to hit them in the head and point a finger when it doesn’t.  Signs and miracles do happen if you open your eyes. Some may chalk this story up to random events and my own misperceptions;  a matter of circumstance that I read too much into desperately searching for an answer to why all of this has happened to my family. It is not. I implore you to believe in signs and miracles. Signs and miracles are all around us. God is still very much in the business of performing them every day. We simply don’t listen or pay attention. I get it, trusting God is hard!

Last April we were told that Jonathan had a tumor. A couple months and numerous invasive and noninvasive tests later we were told it was cancer; neuroblastoma. The oncologist believed it might be a type of congenital neuroblastoma that likely existed in his body prior to birth. It is often discovered during routine, prenatal ultrasound. Christina and I sort of scoffed at this notion as there had been nearly weekly prenatal ultrasounds of Jonathan after his heart condition had been discovered. Since his birth he has had more imaging of the inside of his body than we can count.  In addition to the countless echos, he’s had MRIs, CT scans, ultrasounds and xrays on essentially his entire body. For instance during his bout with necrotizing enterocolitis (NEC) he had chest/abdominal xrays every 6 hours for a week, then every 12 hours and eventually every 24 hours during a 3 week time period and countless additional xrays in the time since then. At some point this mass should have been discovered prior to him being 9 months old.

The oncologist explained to us that without the complex heart condition the preferred course of action would be to operate to remove the tumor. Due to the location of the tumor such a surgical procedure would require Jonathan’s chest to be opened up again and his team of surgeons and specialists felt it would be too difficult. Let me rephrase that, not difficult; potentially lethal as it could cause too much stress on his body. The team really wasn’t quite sure what to do with this second rare diagnosis. One medical professional told us Jonathan’s case is as rare as “winning the powerball back to back.” In the end the decided course of action was to wait. Wait and see if the tumor would grow, stay the same, or maybe shrink (as congenital neuroblastoma can sometimes do). Seriously God, your timing doesn’t work for me at all! Trusting God is hard.

This plan was not exactly a reassuring option for a dad like me who envisions the cancer as black toxic sludge creeping throughout Jonathan’s tiny body poisoning everything it comes into contact with.  Yeah man, these past months have been exhausting.  Over the summer Josiah and I have both undergone surgeries that appear to have been successful. Josiah’s to repair a “kidney reflux” and mine for my knee. We should be openly rejoicing in our healing but instead it feels like we are treading open water in a rip current with a weight around our neck. Our strength is waning and at any given moment we will disappear forever.  Staying the course and waiting on a miracle has been a mind smasher.

The stress of awaiting the latest tumor imaging has been crushing. I have frequently asked God for clarity and received the same answer over and over: “the outcome has never changed” referring a previous message God spoke to us that Jonathan would “be ok.”
I responded to God “but you said that before he had cancer!” I now question God’s original answer because my mind cannot rationalize what is happening.

God, this is not the course of healing that I imagined!
Trusting God is hard.

I knew it was an uphill battle. I see the despair in people’s eyes when I tell them that Jonathan has been diagnosed with a neuroblastoma tumor. I try to remain positive and say “Jesus is going to heal this too! When he does, what a story it is going to be!” They obligatorily nod and halfheartedly say something like “it sure will be.” I see the doubt in many of the forced smiles. It affects me internally as I begin to doubt myself and God. It affects me so much that I secretly wonder how long I can continue trusting without seeing a sign. How much more can I endure physically and emotionally before I just can’t trust God anymore.

Several weeks ago I was in church, once again asking for clarity. The weight of the anchor was pulling me down. The rip tide had me headed out to open water. I prayed, “God are we moving from Colorado Springs?” “Do we need to relocate with my job?” “Will Ethan ever come home?”  “Is Jonathan dying?” I began to weep in the middle of worship time.  I sat down and put my head in my hands. I was now sobbing without regard to what those around me thought, “God I am so tired. I can’t go on emotionally. I am at the end physically. Please help. I trust you with everything. Please help me move forward. I feel so alone and am about to give up. Quitting is not an option, I. NEED. YOUR. HELP!”

I hear a different response “My son, you will have clarity in the next 30 days. Move forward, I am with you.” Encouraged, I get up and move forward.

Sign 1
On a Saturday I went for a much needed fishing/camping trip with my friend. We backpacked about a mile in to fish. Following a very successful fishing venture I sat on the rock to spend some time with my Father in thanks and prayer. I asked for some clarity and “casually” elbow God with a brief reminder that a promise was made some 24 days ago. It is just a prodding nudge to make certain God didn’t lose us on his calendar. I mean who knows exactly how the space time continuum works after all.  Now I quote Cher from the movie Clueless “ As if!”   I pulled my Bible out of my fishing backpack and began reading where the golden ribbon bookmark ended the last time I read.

John 4 is where my golden ribbon bookmark held place. What God wanted me to see was not in the beginning of the Chapter. It was in the end. You got it, right around John 4:47

When this man heard that Jesus had arrived in Galilee from Judea, he went to him and begged him to come and heal his son, who was close to death.
48 “Unless you people see signs and wonders,” Jesus told him, “you will never believe.”
49 The royal official said, “Sir, come down before my child dies.”
50 “Go,” Jesus replied, “your son will live.”

“Are you kidding me! Of all of the places for my golden ribbon bookmark to have landed! I know this is not a matter of chance. I stand up, laugh, clap my hand and show my friend what I uncovered and say “thank you and praise Jesus!”

Sign 2.
The following Tuesday Christina and I arrive at Children’s Hospital to check in our little boy to be knocked out with general anesthesia for about the 20 millionth time in his 13 months alive. For all those who assume putting your child under sedation for a procedure gets easier after 20 million times, it doesn’t. It is still as hard and as scary as it was the first time. Like usual, God guides Jonathan out of anesthesia without any issues. We should be conditioned not to ask results as we know the care team won’t know them immediately, but we ask anyway. As usual we are told we will have to wait until our scheduled appointment on Thursday to find out the results.

Later that day on the drive home Christina received a phone call. She says “It’s Children’s.” I say “they are probably reminding us of our Thursday appointment.” She casually answers it. I can here the tone in Christina’s voice change. She says out loud “the tumor has shrunk.” This is what tears of joy feel like.

Sign 3
In our follow-up meeting with the oncologist we are greeted by a completely different oncologist than we had previously encountered. It was the same doctor but her entire demeanor had changed to a laughing, smiling, optimistic doctor.  She happily explained that she thinks Jonathan’s tumor has shrunken because the cancer was congenital.   Christina and I believe the tumor has shrunk because of you. Because of God. You prayed and God answered!

Jonathan’s healing process has a long way to go and while the tumor could grow again the oncologist thinks this is an unlikely scenario.  She thinks the cancer is well on its way to disappearing in the next year. This, my friends, is not science. I am not saying that God cannot use science to heal. Look at my knee and Josiah’s kidney. God used science through doctors to heal both of us. This, however, is a real life genuine miracle to not be passed off as a matter of circumstance. It feels like God is saying: Here is your shooting star. It just hit you on the head! Open your eyes,  miracles and signs are everywhere daily.

God is not dead. He is in the healing business. I am not the first person to say that waiting on the miracle of healing is not easy. God’s timing rarely matches ours. His methods come in the fashion we would not have chosen. His outcomes are all too often inconspicuous and easily overlooked. If you’re asking for a miracle God is going to stretch you. Sometimes you are not going to get your desires. Remember that whole sovereign thing?  Isn’t this what faith is all about? Trusting God is hard.

 

 

God is not dead. Jesus is still in the business of healing.

“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.