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.