Thursday, August 23, 2012

A Year of Firsts

Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."

This is not the end. It is also not the beginning. It can at best be described at half-time. For those who follow Evan and his story through this portal, there is no small amount of voyeuristic horror, fear and revulsion of a story that holds only one central theme of the pain and suffering of a child become man and now a memory to those left behind. Evan’s story has at times reached out and grabbed readers by their throats and shaken them from the calm reverie of their lives.

There can be no apologies for those words and the emotions that conveyed a tale that so long as it was being written was in itself confirmation that it was not happening to the typical reader. For those who read with intimate knowledge of the agonies of this journey a large debt of sorrow and regret is extended for the pain and memories that Evan’s story may have dredged up.

At 5:45 am on Saturday, August 18, 2012 Evan MacGilvary Jenkins Coleman breathed his last breath. The details of that moment are so intense, personal and overwhelming that they will not be recounted here. What can be shared is that the previous day Evan had begun to decompensate (A medical term indicating that his body was no longer able to maintain the necessary balances required for his life to continue) As the evening approached he fought to find a position of comfort that ended with him doubled over in his bean bag while watching ‘Pirates of the Caribbean’ by way of a mirror on his knee.

As the evening wore on it was clear that he was going to be unable to sleep and the only thing any of his medications was accomplishing was to take the mental edge off the distress of breathing 80 times a minute, unable to cough, heart rate over 160 and a steadily decreasing oxygen saturation level. And as Evan came to an understanding that his fight would soon end, he leaned back into the arms of his mother and allowed her to cool his brow. The five plus hours of this physical ordeal is akin to running over two marathons.

Fighting to the end he continued to sip water through a straw and at 4:45 even asked for a medium Coke. At around 5:30 his final words to his parents were, “I love you.” As the fight and life left his body fifteen minutes later, a calm serene peace descended on his body and he breathed his last. No one will ever be able to say that he did not fight the good fight far longer than any other we have known. Many medical providers have commented along Evan’s journey that his lack of complaining put many adults to shame and set a high standard and wonderful example for his fellow patients.

And so began the Year of Firsts. There was no fanfare of Angels trumpets; there was near silence due to the absence of ragged breathing and an oxygen concentration machine turned off. For those who with the morbid fascination of an entranced audience who have been watching and praying for a different outcome, the moment of collision is but the beginning of the dissipation of energy that had been brought into the impact equation. (Impact equations are a fundamental topic of Physics: The Law of the Conservation of Energy states that energy cannot be created or destroyed only transformed. All the energy going into the initiation of an event must be accounted for at the conclusion of the event.)

The external image of a slow motion train wreck serves the purpose of creating a picture of an unstoppable event resulting in cataclysmic damage that resolves itself not in the moment of impact but through the derailment of cars, collisions with unmoving adjacent objects and structures and general chaos and mayhem. If this verbal description has not grabbed your imagination, please consider watching the beginning of the Steven Spielberg movie “Super 8”.

The internal image for those closest to the event the image is that of a nuclear bomb disposal unit that has suddenly realized its failure as the white hot searing light of nuclear detonation announces the unit’s failure to contain and render the problem inert. The resulting crater lies across all life paths of the unit’s members and the crystallized glassy debris is left behind to explode on contact or cooling at unannounced times and circumstances that leave the impression that one is walking in a minefield where every step, every turn, every attempt at avoidance merely sets off another explosion of a glassy radioactive mine.

The hole left behind is an immense crater of unexploded ordinance that reveals itself in sudden overwhelming waves of intense painful sadness. There is no way to cross this hole quickly without imminent self-destruction, as every turn reveals a trip wire of a memory that explodes into an instant full realization that there will be no more trips to McDonalds for snacks or trips out to relieve anxiety. There will be no more need for Evan’s laundry to be done, or finding out that the last load in the dryer was his. The discovery of a casually discarded jacket over the backseat of the car is enough to initiate total meltdown.

Let there be a necessary intervention of tangential information. Evan is in a better place – whether your belief system runs toward Heaven as does ours, or you are agnostic or atheist, there is no denying that he is no longer suffering the agonies of suffocating to death as a disease process robbed him of the ability to exchange oxygen and carbon dioxide in his lungs. Therefore this writing and the services of this weekend serve a singular purpose of providing those who mourn Evan’s loss a place to jump back into life as we begin the process of coming to terms with our loss.

The metaphorical reference now returns to the smoking radioactive crater that lies in front of all paths of future travel. A look behind shows that the last five years have been littered with wonderful memories through a wasteland of the battles fought, some won some lost, in a war that seems to have been forfeit to an enemy known only as cancer. And as we look at this hole in the ground pockmarked with mines and triggers a salt rain of tears falls in an almost continuous downpour. There is a fear that the sun will never shine again, and any laughter is forced, inappropriate and cut short. Life seems both very wet and very over because we cannot step into the hole. The hole is deep, treacherous and functionally impassable. We are stuck.

As we peer into the future we see that the salt water rain will fill the hole, and around us are growing trees and plants that over time will be fashioned into boats for travel across the salt water lake to the other side. The hole will never go away, but it will become passable and a beautiful place of remembrance.

But today the future does not take away the Year of Firsts. Today it was the first time to request a table for 3 instead of 4. Three days ago it was a first visit to a funeral director and tomorrow it will be a first visitation. There has been the return of now unnecessary medical equipment; and then there was the gathering of pictures and things that defined Evan’s life which is not easy for a young man who lived such a rich life in just 13 short years. In the next twelve months among the known Firsts will be birthdays and Christmas, Halloween and Easter; and these can be accounted for, anticipated and supported. What we fear are the unknown Firsts. These are so numerous at the moment due to proximity of people, places, stories and events. But what will we do in 3 months’ time when we get an invitation for Evan to attend some event that he attended so joyfully in the past, or turning up a lost sock, shoe or mitten when cleaning a closet. Those are the times when the black sheet of overwhelming grief will only be lifted by the joyful sharing of the best moments of his life with people such as you.

Final notes: A Memorial Webpage has been set up for Evan, where you can leave memories about Evan, pictures can be posted, and you can read how Evan impacted the lives of so many others. It also contains the details on services and connections to the ongoing Miracle 2012 legacy. It can be reached at This site will remain in place in perpetuity.

Lil’ Duck: Lil’ Duck was born out of a legacy from another victim of cancer and her friends extension of vicarious living through another duck, Squeaky Edgar who travelled the world capturing events, stories and memories that were shared through a public blog so as to maintain an ongoing interaction with the world. And so our Lil’ Duck is a visual representation of the remaining spiritual presence of Evan in our lives. As Lil’ Duck goes with us, he provides a viable cover for those moments that we forget that Evan is not with us as we ask for tables for four instead of three, or we do activities that we know that he loved to do. We do not plan a blog for Lil’ Duck but rather convey the presence of his memory through pictures on facebook in those places that he loved to be. In the past day Lil’ Duck has been spotted in Evan’s Garden, at the Adidas Outlet store where he got his hallmark shoes, and at the Cracker Barrel where he loved to order pecan pancakes.

And so this piece is done, the story will continue and the writings will be given life and venue in so other arena. In parting and in some ways hinting at the future; children no matter how unique should never be used as Guinea Pigs. For all the failures of medicine, morals, and people – guilt and regrets will never change the outcome of events in the past. And while we have traversed some rough days in the near past and have some rougher ones in the next week; we hold onto Peace, Hope, Joy and Love – knowing that the greatest of these has been, is and will continue to be Love.

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