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

Hold on tight a little longer

So, here we are…less than a week away from Jonathan’s birth. There are so many things I wanted to write about, so many things I wanted to say and do before we made it here, but alas, here we are.

In actuality I’m pretty impressed that I haven’t gone in to labor yet as two of my babies arrived early. I did however have one “due date baby” who was nearly 8lbs so I’ve been praying Jonathan will follow down that path. The longer he stays put, the bigger he can grow, and the better off he will be for surgery. We are anticipating his arrival by the end of the week and open heart surgery (The Norwood Procedure) early next week.

Are we prepared for this? Absolutely not. Would we ever be prepared for this even if we had all the time in the world? I doubt it.

Some of this morning’s final preparations have included time on the phone trying to find some extra help for respite care for Ethan. We’re also working on finding someone who can complete a neuropsych eval on a nonverbal, developmentally delayed teenager as well as a psychiatrist who is able to see him. If anyone has any recommendations please, please contact me!

I have also been contacting various friends and acquaintances, to coordinate child care for my little guys. Thank you to everyone who has offered to try to be available if we find ourselves in a pinch!

We have been very fortunate to have found a nice home to stay in while we’re here in Denver. The boys are still adjusting to being in about 1/3 of the space they’re accustomed to and the downstairs neighbor has been more than gracious in tolerating their “cabin fever” and general little boy rambunctiousness.
We miss our New Life family who have been such a community of support but have found a “home away from home” with the Novation Church family. They have surely demonstrated what it truly means to be a “church.” In addition to friends and family, Dan’s employer and “work family” has been amazingly supportive and understanding of our situation during this time as well. We have truly been blessed by our “village.”

If you feel led to keep us in prayer our requests include:

  • Complete and total healing for Ethan,
    Jonathan‘s heart,
    and Josiah‘s kidney
  • Safe labor and delivery
  • Health for whole family – if anyone is sick they will not be able to see Jonathan and I want my boys to meet their brother before he undergoes surgery (in fact anyone who is not up-to-date on vaccinations, especially TDAP/DTAP will not be able to see Jonathan in the foreseeable future due to the risk to his life should he contract a respiratory infection)
  • Wisdom for the surgeon, doctors, and nurses
  • Blessings on everyone who has been and will be caring for my children (especially my family who has been caring for Ethan)
  • Additional resources and care for Ethan
  • Peace for the entire family (me, D, our boys, grandparents, aunts, uncles)
  • Safe and healthy labor and delivery for Jonathan’s cousin who is due to be born the same day as Jonathan!

We have created a facebook page to help us quickly provide updates once Jonathan arrives
Jonathan’s Journey

Small Miracles

In the midst of what seems like bad report after bad report we finally have a good report: Josiah will be keeping both of his kidneys!

We are still looking at a surgical repair in the next month or so to correct the reflux issue. As scary as any type of surgery on a major organ sounds, I think it’s definitely less scary than the alternative.
Case in point: out of no where this week Josiah spiked a fever that quickly escalated. An urgent care visit, a pediatrician office visit, and two different antibiotics later and his body is responding. It sounds so silly to me that a simple thing as a fever caused such an intense and immediate reaction in seeking treatment but the fact of the matter is if another infection invades his kidney it could leave permanent damage resulting in the outcome, we are thankful to be avoiding, the loss of a kidney.

We are also incredibly blessed that Children’s Hospital Colorado is nationally ranked in both of the specialties two of our kids will be having surgical procedures in this summer. We have learned who the two surgeons will be and are ecstatic that both are considered to be the best we could have gotten. That’s a pretty great miracle right there.

In other good news: we have an amazing couple who will be staying in our house this summer while we’re gone! This is a huge relief in easing the burden of our temporary relocation. They are actually the aunt and uncle of the fantastic young lady who has been babysitting Josiah and Elijah for us. In addition to babysitting she has helped me with cleaning and organizing as we prepare to leave our “home.”

We have had an incredible outpouring of love and support from the community of people around us; friends, family, acquaintances, even complete strangers. If I had to be thankful for this family crisis (and maybe some day I will be able to honestly say I’m thankful for what we’re going through but I’m not there yet) it would be because I have gotten to see how truly wonderful humans can be to one another.

This experience has awakened me to the fact of how little I have done for others in the past. I am so guilty of coming into contact with pain and inside of my head being secretly grateful that it wasn’t me, that I could go home and sleep at night. As people have been supporting us in so many ways I’ve made big plans on how I will be “paying it forward” when we come out the other side (and ways that I can pay it forward now). As I have pleaded (even bargained) with God in prayer this week to completely heal my children, or even at least one of them, I felt the Lord prod me with a question. “If I completely free you from this will you go on and live your life as ‘normal?'”
Wow. The temptation would so easily be to forget all of this, to forget all of the other people in pain and crisis, to isolate ourselves and to live our happy little lives away from the heartbreak of others around us. I don’t want to be that person. I want to be the supportive, encouraging person that others are being to me right now.

Many years ago when Ethan was a baby, I was going through an incredibly intense and difficult situation. It changed me as a person in building my faith and strengthening my relationship with the Lord. I remember praying “if this is what it takes to keep me close to You then keep me in pain Lord.”
What a dumb thing to pray. I should have prayed thanks to the Lord that through the pain he had kept me close to Him and asked His help to never stray away and forget. More than a decade has passed since then and I still have only a rudimentary understanding of the mystery of God but I do know that He is good. He never causes us pain, but when pain happens He uses it toward His glory and plan, if we will allow Him to do so.
So Lord I ask you to perform creative miracles and completely heal each one of my children but in the process help me to never forget what You have done. Enable me to be a pitcher of cool water to others as they walk through the desert. Let me never be callous to the pain of others and to always be thankful for the smallest of miracles.