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 http://www.cremationsocietync.com/sitemaker/sites/Cremat2/obit.cgi?user=688738Coleman 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.

Obituary

Evan MacGilvary Jenkins Coleman, age 13 of Raleigh NC was called home to heaven at 5:45 am Saturday August 18, 2012. After a five year battle with malignant melanoma, Evan was held in his mother’s arms as he came to eternal rest.


Evan was born February 16, 1999 in Royal Oak, Michigan (a suburb of Detroit) to Paul and Elizabeth (Lizy) Coleman nee Zimmerman. He was born with a Giant Congenital Nevus that was the origin for his cancer. His elder sister, Morgan, was a schoolmate of his at Our Shepherd Lutheran School in Birmingham, MI until the family moved to Raleigh in 2006. At that time Evan was enrolled at Wake Christian Academy. In the fall of 2006 he accelerated into the third grade, and a little over twelve months later he had his first of 6 surgeries to address the mass that had developed on his left back. He persevered through school until the chemotherapy medications interfered with his traditional school day. As a result he began home schooling in 2010.

Starting as a Tiger Scout in Michigan, he continued Scouting at Holland’s Church and finally settling at Pack 24 in Clayton where he earned his Arrow of Light prior to crossing over to Boy Scouts. Some of his favorite times were camping both with the Scouts and with his family in the parks and woods of Michigan and North Carolina.

A Renaissance Man in a sound bite age; Evan loved music, art, math, animals, building, architecture and computers. In 2009 he won the NCCSA Fine Arts Science Fair project for his construction of a transparent body computer that powered 3 interconnected video monitors. Musically he played trombone, but really loved improvisational piano. He leaves behind a dog, 2 dwarf hamsters and over 30 fish.

A long standing LEGO builder, he vacationed in Legoland California as part of a Kids Wish Network trip in between a first round of chemotherapies in 2008. His love of life, courage, perseverance and grace under pressure inspired everyone from professional soccer players to the more than 100 volunteers who worked on creating the first half of Evan’s Garden – a place of peace and reflection. It is also the site of his first full scale building from his designs.

Some of his deepest frustrations arose from an intolerance of stupidity, lying, selfishness and whining. His outlets for these situations revolved around his artistic expression and first person gaming. Among his greatest disappointments was when people gave up on him because they gave up on their ability to help him. The eternal optimist he continued to research his condition within a week of his passing, and he constantly challenged his parents to see the brightness of his hope during the most difficult of struggles.

His name means ‘Little Fighter’ in Welsh, but he is remembered for the big fight he gave to his arch nemesis Melanoma. His journey of 6 different surgeries and 4 different rounds of chemotherapy were an ongoing testament to his will to live. In the end, as his ravaged body bore the brunt of the disease, he lay back in his mother’s arms as she cooled his forehead and let his father massage his feet as they sang songs of peace and love, prayed and read scripture. He passed into the peace he so richly deserved at 5:45 am. as his pain, anxiety, discomfort and torment were ended.

Evan is survived by his parents, Paul and Lizy, his sister Morgan, Grand Father Rev. Paton Zimmerman who lives with the family. He is also survived by his paternal grand parents, Margot and Bernard Coleman of Asheville, NC; And extended family from Michigan, Pennsylvania, Georgia and England.

Visitation will be August 24, 2012 from 5-8 pm at Holy Cross Lutheran Church, 2920 NC Hwy 42 West Clayton, NC 27520. The church can be reached at 919-553-4784.

A Celebration of Life Service will be held at Holy Cross Lutheran Church, 2920 NC Hwy 42 West Clayton, NC 27520 at 11 am. Holy Cross Pastor William Beyer will lead the service and Evan’s Grand Father Rev. Paton Zimmerman will deliver the sermon. Scouts in attendance will serve as ushers.

Arrangements are being handled by Cremation Society of the Carolinas, 2205 East Millbrook Road, Raleigh, NC 27604.

Evan’s Fund was established in conjunction with Miracle 2012. (http://Miracle2012.webs.com) These efforts have resulted in the establishment of Evan’s Garden and a concerted effort to eliminate Evan’s medical debt. Going forward the focus of these efforts will revolve around establishing a research protocol to attack the cancer Evan suffered from and to reach out and fund those organizations that both helped and inspired Evan including The Children’s Inn at NIH, Nevus Outreach, Inc., the LEGO Foundation, and others.

Thank you to all the people who have been a support to us.

Life is like a Road



Life is like a road,

The road is often not straight,

or clear,

and sometimes the road splits,

and we must choose what direction to go.



Sometimes we can walk this road with friends,

other times we must walk alone.



But when you get to the end of the road,

and all is said and done,

nothing really matters anymore,

except for the journey,

and the love you've shared and received during it,

and the fact that this love will stand the test of time,

and go on forever.



-Evan Coleman

July 30, 2012

A Brief History of Wilmington NC – Evan’s perspective

This morning Evan woke up in Wilmington, NC at around 8:30 am and with that act a day of equally intense and juxtaposed emotions was begun. In the last 8 hours we experienced heavy concern, deep soul defining sadness, sweet uplifting joy, profound gratitude and humility, and then full circle to heavy concern tinged with hope. But as with all things these last six weeks nothing is realized without a firm foundation.

In this situation, the foundation laid was actually the big events of the past weekend: The Concert, and the Grand Opening of Evan’s Garden. With no reservations or qualifications, nor cynicism or sarcasm; both events were roaring successes. They of course could never have been realized without the overwhelming generosity of time, talents and gifts of friends and family. To try and frame the support; there were over 100 volunteers who participated in preparing a blank grass canvas into a warm and colorful place of peace and tranquility that is Evan’s Garden; On Saturday, over 30 volunteers, 4 gifted music groups (Erin Nenni, When Forever Comes, Scott Barton with his Vocal Flava, and The Josh Pepper Band), a talented Stage Manager, an amazing MC, and a gifted Director put on a near flawless highly professional event.

Evan kept his distance as he is want to do at the moment, but listened, watched and observed all the people and activities, all while tracking down technical support issues on Saturday, and designing the next element in his namesake garden on Sunday. That said, the intense level of activity took its toll and Monday was very much a crash and burn day that had his parents on their knees more than once seeking one more hour, minute or second of time.

By midafternoon Tuesday the emotional and physical effects of the weekend had worn off to a great extent and Evan coming out of the woods after battling an infection for the past 5 days perked up enough to say that he wanted to ‘go out’. These words are buzz words for his need to leave the place he feels will be his Waterloo. A decision was made to go to the beach, a final family beach vacation, the destination: Wrightsville Beach just outside Wilmington, NC. 2 hours away, Hotwire for hotel, and we were loaded in two cars (Evan travels with wheelchair, portable oxygen concentrator, 2 tanks of oxygen, pillow and 4 blankets, computer backpack) and on our way.

Wilmington has a special place in our hearts as it was one of the first places visited in North Carolina 10 years ago. Evan spent July 4, 2002 watching the Wilmington/Wrightsville Beach Fireworks from the deck of a beach house on Topsail Island just up the coast. 3 years later he did his North Carolina City project on Wilmington, did you know that Walt Disney World could fit the entire City of Wilmington in its boundaries? In 5th grade he travelled to Wilmington Christian School with his own designed and built computer to win the State Science Fair. Since that time a visit a year to Wilmington with a requisite stop at the Trolley Stop hot dog restaurant became family tradition. Except we hadn’t been this year, but there was an itching in the pants and a searching for the chance.

Last night as we pulled into the hotel there was a heavy overcast and the streets were lively but dark. A late night food run came back wet but victorious and a midnight breakfast of chocolate chip waffles with syrup, bacon and eggs was hungrily devoured by a famished Evan. This would be a good time to note that it had been determined several weeks ago that the radiation therapy had sufficiently disabled (please read destroyed, crushed, liquidated or your own vernacular for severely damaged) the main tumors that there was no significant energy depletion from them; so that Evan’s weight loss was now only due to his own appetite. Enter Prednisone to reduce lung tissue swelling and its desirable side effect of appetite enhancer.

The sun rose at about 6:30 am this morning, but was nowhere in sight as the rain pelted down and wracked window and pavement alike, lightening sparkled and the wind whistled and howled around flagpole, lines and corners. There had been no family beach time last night and it looked doubtful at best this morning. When Evan woke up his eyes told a story of anxiety. This was not home, this was not familiar, this was not good. Effectively his trip came to an end when he took the medications necessary to calm him down.

After driving around Wilmington a la the late night drives to lull him to sleep when he was a baby, we gathered up our belongings and in the pouring rain left Wilmington behind Evan. During these remaining months with Evan there are diametrically opposed strands of thought that beg for attention: First is the strand that wants to secure memories by doing those things and going those places that will be indelibly etched upon the surfaces of all our minds never to be washed away; the second is the strand that never wants to know when the last time you’ll visit a memory place with Evan.

And so as the rain poured over the car, tears streamed down a face knowing that this was the last time Evan would be in a place so near and dear to his heart. Truly this treasured place of memories will never be the same in the future. A walk on the beach will bring back memories of carrying a little boy from surf to shower so as to reduce the pain of chafing sand inside a skin tight body suit. Or a calabash meal on the inland coastal waterway will conjure memories of family friends and a little boy with a boyish grin and quick wit. Even the wind whistling through the dune grass will draw out memories of children’s laughter echoing as they run through the hot sand to the waiting surf; prominent among them a boy dressed in royal blue from his head to his ankles. Yes, August 1, 2012 will mark the last day Evan was in Wilmington, but will also be a day that Wilmington will live in us.

An hour later as we traveled the flat ribbon of road that is I-40 in the coastal plain, the sun broke through the clouds and shone warmth and light on everything including Evan sleeping in the back of a cruising car. The warmth of the sun was as uplifting as the rain had been depressing and was a reminder that comfort follows heartache even if some time and distance must be traveled before it is realized.

Tears gave way to somber comforting joy. Comforting joy gave way for the humbling of being informed of a generosity beyond the means of most mortals. Our family, friends and none too few strangers who have become friends were able to help us raise slightly less than half our goal for Saturday night. This is not to be sneezed or sneered at, on the contrary it is something to be overjoyed about for we know the challenges of a down economy, many people gave to Evan to the point of hurting. We knew this and appreciated every last penny for it represented the best that people could do. As the evening wound to a close we also knew that the generosity of the players, teams, management and league office of the NASL had come together to allow accumulated funds to be 2/3 of the goal for Saturday.

When Lizy first began working for the Carolina RailHawks as the Head Athletic Trainer, she also became an employee of Selby and Brian Wellman the then owners of the team. It was a relationship at a distance, but the Wellman’s had a place in their hearts for Evan, for what he represented and for how he conducted himself. Being the owner of a minor league sports team is not an easy thing to do, and friends are few and far between just from the sheer logistics and influence that can be unseemly and destructive to team goals. That said, the Wellman’s went out of their way to give back to the community in so many big and little ways.

It can also be said that they never forget to take care of their own. Almost two years after turning ownership over to another entity, the Wellman’s did not lose sight of the importance of maintaining relationships, supporting the underdog and reaching out with a helping hand. With by far the largest single donation toward Miracle 2012: The Concert Selby Wellman donated a sum equal to the shortage of the nights goal and a little more. Humility is to know that some gifts when given are too great to be repaid, that the only appropriate response is gracious and thankful acceptance.

And so we stand humbled before our old friends, family, new friends, business partners and former employers; with a bowed head and grateful heart we acknowledge that we are not worthy of such divinely inspired gifts but we will accept them and use them wisely.

Exhaustion is now settling in on the rest of the family, and tomorrow we will once again seek to be revitalized by working on Evan’s Garden. If you would like to experience some peace and revitalization we invite you to come on by and we’ll put you to good use. To borrow the saying of a friend; “We started from dirt, and we’re gonna go back to dirt. We might as well get familiar with it in the middle”

Many peace and blessings to y’all. If we don’t see you in the garden, perhaps you’ll stop by to hear The Regulars as they Jam for Miracle 2012 on Saturday, Sept. 22 at 7:00 pm at the Big Easy in Cary.