It’s 5:48 am. I lie awake staring at nothing. I am not tossing or turning. I am lost. I am lost in the memories of three years ago this very minute when the interminable hum and cycling of an oxygen condenser were no longer intermingled with the panting of my son trying to inhale and retain every last molecule of oxygen because his heart had given its last beat unable to meet the demands of life.
Five hours before, exhausted from the challenges of trying to live life while caring for the dying, I could no longer keep my eyes open. I could not continue to hold my son’s head as he struggled to keep his airway open as big as possible, I could not stay awake to engage in the staccato conversation of the end stage lung disease. For six weeks he had labored against all odds as his oxygen saturation dropped from 98% on room air to 92% on 2 liter of oxygen till on this evening his oxygen saturation was 64% on 4.5 liters of oxygen.
But now it’s 5:48 am and I can’t sleep, I don’t want to sleep, I just want to run away from the memories of shame. I am half a father, and today cements that fact into my brain in a manner like no other. One of my two children died before they were close to leaving my home. This was no car accident, no random excess of booze or drugs or suicide; He died before he was old enough to experience any of those ‘self’ induced endings. He died of a disease of ignorance. I did not know the answer, and no medical professional in the world knew the answer, heck only a couple of them had even thought to begin asking the right questions.
13 and a half years earlier I stood gazing at my new born son face down in a neonatal incubator. He had been born following emergency C-section because his umbilical cord had been wrapped twice around his neck. Only the presence and skill of the Obstetrician saw the events as they unfurled before our eyes, and all of a sudden I went from caring for my very pregnant laboring wife to being a fool alone in a birthing room with no nurses, doctors or my wife. I wandered the halls of the hospital aimlessly until I walked into the NICU and asked if my son was there.
Surprisingly he was, the NICU nurse turned and pointed to a little mass of flesh curled up under a heat lamp. He was small, and he had all four limbs, and a C-section newborn head (too perfect to be true), and his back was covered with a brown, black, blue, red and yellow wildly bumpy and irregular thing that looked like either afterbirth or a poor attempt at a Hobo’s blanket. I in my paramedic wisdom and not wanting to appear like a complete idiot asked the classic newborn questions:
“What were his APGAR scores?” 6 and 9, good stuff.
“And what is his O2 Sat?” Oxygen saturation is a good measure of health. 98% on room air. Good stuff again. Below 94% I would start to be concerned, below 90% and I would be worried and start oxygen supplementation, below 80% and I would have been looking to intubate, so very good stuff.
“And his blood glucose levels?” 48. Good before a first feeding, have to give the growing body and brain all the sugar we can.
“And I’m not sure of your protocols, but when are you going to wipe him off?” What do you mean that’s him? What are you telling me? Giant Birthmark? You bet I need to see the doctor, because I am such an idiot.
As I look at the clock it’s still 5:48, and Lizy rolls over in bed and asks me what time it is and I tell her. She sighs the sigh that only the mother of a dead child can release at the moment of remembrance, an echo from the broken heart that emerges from the mouth like the distant moan of wind on a windswept and empty beach where just hours before there was the frolicking and laughter of children playing in sand and surf.
It’s 3:12 am on Black Friday 2012, I am sitting in a kitchen in upstate Tennessee sitting across from a friend, a surrogate son, a big brother of another mother to my children. He is strong and fit, a multi-tour veteran of the US Army who has been all over the world being the sole medical provider of small groups of fighting men. And he is significantly less drunk than I am.
It has been about three and a half months since Evan died, and we couldn’t face either doing Thanksgiving at home nor with people who would have no idea what we were feeling so we hopped in a car and drove 12 hours to a farmhouse in the middle of nowhere. We walked in the pastures and played with the dogs, and horses; I can’t remember if the goats and chickens were there yet, but it didn’t matter we were in a place of love and respite.
The only thing missing was Evan, and so early on that Friday morning I let go of all pretense and machismo. With tears streaming down my face I shared with the only person I knew would understand the fact that I had let my son down. I had failed in my fundamental responsibility as a father, to get their child to the point of beginning his life on his own terms. The only other person I could imagine with a similar mindset was this Man among men across the farmhouse table. He had faced the same inner demons, he was an Army Combat Medic; a person tasked with ensuring that his entire team got home alive after each mission.
In my mind I had failed my mission. The debriefing was painful, cathartic and forgotten the next day; buried in the graveyard of ideas and concepts not fully grasped or appreciated until the years of wisdom allow a person to fully put them to rest or come to terms with. No one knows the pain of a father who has failed to meet his own expectations; and it takes a person of similar understanding to shed light on the unreality of those expectations, and to shine light on the dimness of self-inscribed responsibility for defeat when there were so many other factors in play.
It’s 5:49 am today. The shame I feel is self-serving and destructive. What I now grasp is that I was ignorant. I lacked the knowledge to make the critical decisions. In some cases the information was withheld from me (Medical Ethics conundrum Beneficence vs, Autonomy while Justice is ignored), in others ways the information did not exist in a usable form for decisions to be rendered in the full light. It felt like the dawn right now. We are socked in by clouds in the North Carolina Mountains having run away from the pain of home on this day.
I am no different than many fathers who have lost their children to rare diseases. That my processing of my grief takes the form of writing and sharing makes me no better nor worse than any of them but it has given me critical insights on the grieving process and the shame that often accompanies a father’s thoughts. But now my strengths should be more fully expressed in the realm of academic knowledge to shed a little light on our ignorance.
While I finish up work on a couple of papers I wanted to share with you this link to an article I referenced in my last post. http://www.ncbi.nlm.nih.gov/pubmed/26266759 If you recall I hinted that new material was and is being developed by an amazing group of individuals in Pittsburgh. While this is just the abstract it is a taste of what’s coming. If this work fascinates you or you see the common links between NRAS and BRAF and other cancers then think about lending a hand to the process. Reach out and contact me, leave a post, take the first step in becoming a member of the Army of Citizen Scientists and see how with your help we might shed more light.
If you are unable to join the fight on the front lines but feel moved to support the fight moving from shame and ignorance to enlightened empathetic knowledge we are working on direct links into the research foundation funding apparatus, please be patient.
The days like this will come and go, each one a marker of time passed or of time passing away. Evan’s Birthday – February 16, His remembrance day – August 18, Each Father’s and Mother’s day and all the other days that can serve either as unscalable obstacle or like a riding crop to a thoroughbred’s flank. Be it a birthday, Christmas or the 4th of July the memories can either inhibit progress toward lasting legacy or be a terminal point of sorrowful reflection.
Everyone who knew Evan personally and all those who have come to know him vicariously through others will know that the weakness of today is just that; he would want us to rejoice in his life, love and faith. His passion was knowledge, information, light and fun. And so those principles are worthy pursuits for us all.
So from this dim, dreary and humid locale I implore you to find a little sunshine today and share it with all who you meet. With Love, Light and Laughter we wish you the best of days from Blowing Rock, North Carolina to wherever you are in the world as you read this.