Charlie's Gift

Charlie's Gift

By Dianne Byrer

Charlie Nay
&
Pam Nay
(Charlie's Mom)

In Honor of
Jim Nay
(Charlie's Dad)
&
Susan Kellar
(my sister)

"There is nobody from whom you cannot learn. Before God, who speaks through all men, you are always in the bottom class of nursery school."
Dag Hammerskjold


Be careful because at first glance people can appear to be ordinary. We under estimate their impact. Charlie was a student at my school. I never anticipated he would be an inspiration for strength and courage. The details of our time together will dim, but his life will influence me forever. Now more than ever I know that "all things do work together for good." He has expanded my faith. I know I can transcend this world that he left behind. Life is better than good. It is an adventure. It has exciting twists and turns that I have no desire to predict. Time has a way of always working everything out perfectly.


" It's As It Should Be"
Deepak Chopra


The events that make up life are purposeful. They are building a foundation for our future. When we learn to relax, we can ride those rough waves of life more gracefully. At one time I believed that in my head, but Charlie and his mother Pam seared it into my heart. Of course I have relapses of panic now and then, but I return to accepting the bumps in the road more quickly. Now I understand, the most important thing, I learned my greatest lessons of life from someone who looked like any other middle school student.


He was overwhelmed by difficult circumstances, but his enthusiasm for life created unique adventures for him and those who let themselves get close enough to notice. He squeezed joy out of those ordinary days we take for granted.


" Whenever you see darkness, there is extraordinary opportunity for the light to burn brighter."
Bono in Spin


No matter how foreboding his circumstances were, he had the courage reflect upon his situation. He did not run from the reality that he was going to die. Death scared him, but he pushed himself to talk about his fears. He had the guts to let people know what they could do to help him get through. Don't get me wrong; he was a tough guy not a whiner.


I look up to him because often times I am too proud to ask for a hug. Although he was not a huggie kind of guy, he did not hesitate to let you know he needed or did not need one. He knew how to tell people what he needed. Charlie's ability to ask for what he needed with grace made it easy to be with him through many of his intense struggles.


" The Inner fire is the most important thing mankind possesses."
Edith Sodergran, A Scandinavian Poet

Charlie was a fighter. Until he was stuck with loosing, it was never option. When the facts forced him to realize that a well-fought battle can still be lost, one of his greatest concerns was for those that had cheered him on. He felt he had let then down. It was frightening to think of dying. It was also hard to find a way to help the people he loved, loose him.

"Normal day, let me be aware of what a treasure you are."
Unknown

Charlie was facing the unknown of death. He was concerned with what his Mom would do without him? At 13, he was in an unusual position. He was forced to think about the big questions of life usually left to people much older than him. He was not looking back on a full life. He was looking forward, to the loss of not being able to grow up. Those things we take for granted. He knew he would not get to drive with a license, got to his prom, or get married. At the same time he was an ordinary middle school student going to class, and reading Harry Potter books. He was also experiencing the pressure of getting to class on time, and getting his homework done. He was hanging on to what was "normal."


On the surface no one would know these things were weighing on him. He took time to look at these questions and went right back into living. He was outside of the norm with his unique hair cut, and the daring messages he wore on his Kid Rock T-shirts. He was always telling me: Boys will be boys, and smile that mischievous smile.

 

"Normal day let me be aware of the treasure you are.
Let me learn from you, love you, bless you before you depart.
Let me not pass you by in a quest
For some rare and perfect tomorrow."
Mary Jean Iron


The hardest time for me was when we both knew he would not come back to school everyday. I think it was hard for him because he started to really like learning. He liked the challenge and was able to meet it. School was where his friends were and life was. It was another sign of ordinary life slipping farther away.


" Destruction! What furry in your attack,
How cruel your victory over this poor body!
You razed everything, you plunged a mind into abyss of anguish and released this smile of ultimate joy."
Dag Hammerskjold

 

Charlie had one series of surgeries that eventually took one of his lungs. Each one was far enough apart he had time to recover and continue his "normal" life. He was quite a warrior in these times fighting an amazing battle with great optimism.


Later he had another series of surgeries on his back. He was an amazingly tough guy, but the experience began to wear down his unquenchable spirit for life. By now he was pretty sure these efforts were only buying time. He knew he was no longer fighting to return to "normal". It was mentally and physically draining to be uncomfortable day after day with no real end in sight. It became more difficult to keep his chin up. Hey! This is when he was hanging on by his fingernails with no extra energy to think of keeping his chin up. He was beginning to use all his strength just to hang on.


It was subtle at first, he started to rest more and fight less. It became obvious the day it was more important to have more painkillers than to get up. He wasn't done fighting but fighting meant more poking with needles, four-hour trips in a car to receive daily radiation, and more and more uncomfortable tests.


" Why should we refuse the happiness this hour gives us, because some other hour might take it away.”
John Oliver Holmes

When spring came Charlie got the coolest dirt bike and the clothes, equipment and helmet to match. He was able to show himself and the world an image of his daring spirit. Sometimes he made people nervous. It made him feel good. It made me feel good. Everyone just smiled and shook their heads. Boys will be boys? Right?? It was not something I was conscious of at the time, but I think he was tired of how sadly we looked at him. I am sure Charlie much preferred the look of shock and awe on our faces. The joy of seeing him out there riding helped all of us that loved him. He wasn't going to go out in an ordinary way.


" Life will judge me by the measure of the love
I myself am capable of,
And with patience according to the measure of my honesty
In attempting to meet it's demands."
Dag Hammerskjold


I was honored to get to know Charlie's mom, Pam. Although she had a serious illness, it was not obvious.


She was so busy looking out for Charlie that she would miss her own doctor's appointments. Pam's love was awesome, overriding all physical and mental pain. She was tough as nails. I have never known anyone so relentless and dedicated in the face of such adversity. Charlie worried about her, but he taught me that things have a way of working out.


" Change when it comes cracks everything open"
Dorothy Allison


I spoke to Pam, as the doctors were preparing everyone for Charlie's death. She had missed another doctor's appointment. Pam had a life threatening illness herself with the real possibility that she could die. In order to receive treatment she would have to leave Charlie, and leaving her son while he was dying was not an option. Although she was seriously ill, it was a surprise to all of us, when Pam died suddenly.


It was a grief filled day for everyone. Mainly it was very hard for Charlie, and his Dad. Charlie no longer had the concern that he would be leaving his Mom behind, but he was faced with saying goodbye. He said his Mom was getting a place ready for him. She died 10 days before Charlie.


" Do what you can--
And the task will rest lightly in your hand,
So lightly that you will be able to look forward to
The more difficult test which may be awaiting you."
Dag Hammerskjold


Charlie called me the Monday after his Mom died and asked me to spend the day with him. Four days before he died, I had the honor of spending the day with him. It is a wonderful thing to be with someone who is dying. I know many believe it would be scary or gloomy. He continued to give himself and document his medication that helped to manage his pain. He continued to be involved in his life. He asked me to turn around a bouquet of roses he still had from his mother's funeral. They were still quite beautiful, and he wanted to be able to see one rose that was especially nice. We did not share all kinds of words; we shared quite an ordinary time.

" Speak, then, freely of the joyous life we will know no more,
Of the activities in which we can never again take part,
Of the freedom which has gone forever from us.
Make us understand your difficulties
And the questions, which puzzle you,
Even if they are of the kind from which illness absolves us."
France Patorelli

One of his special friends called and they had a normal teenage conversation. I wanted to tell the caller not to bother him with that everyday stuff. I realized later in the day how important normal still was. The greatest gift Charlie's friends gave was when they treated him like anyone else, "normal".

"Your life is without foundation if,
In any matter you choose on your own behalf."
Dag Hammerskjold


I have one regret, which is my greatest weakness. At the end of my special day with Charlie I did not really say good by with a hug, I chose to think I would see him again in a couple days. I wanted to pretend it was not our last time together. I wish I would have looked into those deep dark eyes one last time and said good-bye. I would have given him one last hug.

"When you learn how to die, you learn how to live."
Morrie


I will never be the same because I knew an angel disguised as Kid Rock. I don't think Charlie would approve of comparing him to an angel without adding he a persona more like his hero, Kid Rock.

"This disease is knocking at my spirit. But it will not get my spirit. It'll get my body. It will not get my spirit." Charlie opened my eyes to the experiences of fighting a life threatening disease. Although it has been only a glimpse, I am thankful that it has all worked for my good.

"It is easy to be brave from a safe distance."
Aesop


Now I am facing this same challenge with my sister, Susie. She, like Charlie, faces this terrible disease with class and dignity. Although similar in many ways, my sister's journey will not be exactly the same. I can see her tired eyes, and the concern she has for us as she faces the reality of the lost battle.

"Do what you can--
And the task will rest lightly in your hand,
So lightly that you will be able to look forward to
The more difficult test which may be awaiting you."
Dag Hammerskjold


Even though I know better, I give her that pathetic look sometimes. She does not have to cheer me up, although it would be cool if she would get on a dirt bike in a cool outfit and fly around like a wild woman. Charlie's gift has helped me try harder to truly be with my sister although I know I fail. I hope we can share even more openly. Charlie helps me to remember to encourage her to tell me what I can do. Sometimes I am lost! I cannot figure out how to help on my own. Maybe I will soften up and surprise her with more hugs. I know there will be joy in these last days and the days after. As my sister says we remain "optimistically hopeful." We are always open to miracles.


" We can't do much about the length of our lives,
But we can do plenty about it' width and depth."
Evan Esar

The loss of Charlie has been profound, but because he lived his life with fullness, the sting is not as severe. He would rather have had more time, because he would not take it for granted like I so often do. He wished he could go on more adventures, because he would certainly enjoy more of them. Personally, I wish I had years and years to spend with him, because I still have so much more I would like to learn and experience with this dear friend.
As for my sister I will certainly miss the one person who truly knows me from my quirky past to my crazier present. We can only imagine what both of them would do with a long life, because of both of them are so good at living life with passion.

"The greater task is only a higher class in this school,
As you draw closer to your final exam,
Which nobody else will know about.
Because then you will be completely alone."
Dag Hammerskjold

I just hope I can do them justice with my life. I want to hug more, look into eyes more, listen more closely and not be afraid to hold hands when it gets really dark. Most importantly, I want to notice the detail of a rose as well as the lives I encounter. When the world goes out, I want to be the one who comes in.

"To be free is to be able to stand up and leave everything behind--without looking back to say Yes."
Dag Hammerskjold

After Charlie died, his Dad, Jim told me about his death. Charlie knew he was dying and wondered which one of his friends knew. Jim's appearance became so peaceful. He was in awe as he described Charlie's exit.


" God Lives in the Unknown."
Deepak Chopra


My eulogy for Charlie:

Awestruck, Jim described Charlie looking up into the heavens in anticipation. He said, "I'm dying", as he was in the process of beginning his new adventure into the great unknown. Charlie lived life with gusto. He was determined to give each day 150%. Time was of the essence. He literally breathed every last Breath with a determination, and concern for those he loved. Charlie lived many years of adventure and love in his Gigantic Short life. We look at ourselves in comparison and cringe. We wish our days and hours away, hoping for Friday or 5:00pm. How we take life for granted just expecting another day to be given to us. Charlie participated in a fierce battle that is now behind him. He fought the battle for not only his life but for just some more time, one more day. He was a true warrior who showed honor on the battle field not necessarilly using the prettiest words, but that is what soldiers are like. During an intense battle in the Iraq war there was some live coverage where a soldier said get out of the way!!! There was word thrown in there that they could not bleep out. In tough spots people use some intense language, but oftentimes those are the kind of people that get down, get dirty and get the nasty work done. Charlie had that kind of toughness with so much love underneath the surface. Charlie was Charlie was Charlie and those kind of people are rare these days. It may have offended people who are more refined, but he was in a foxhole. He had work to do, a fight to fight. When we really listened we could see where his heart was...sometimes it was just about getting through. Charlie's was out there and he let us see it. It is hard to imagine what it is like to fight, knowing you are slowly but surely facing a relentless enemy who slithers it's way into your body and hides where no one is waiting until it takes over. This was as much a battle field as any war. On this battlefield a great warrior was born. We have great admiration for his fight, but Charlie would have rather been a typical 14 year old being his own ornery self. He did not have a choice but he continued to face that battle with dignity and class. He lives in our hearts as person we were all honored and privledged to know. I will always have a special place in my heart for him and his fellow warriors Pam and Jim. I was priviledged to witness a loving family fighting valiantly in the foxholes. They battled by his side until every ounce of strength and courage was used up, and still faced another day and another. They were the greatest team I have ever known. I have heard it said there are no atheists in foxholes. With Charlie, Pam and Jim their great faith carried them. When We are facing life's roughest realities that is what we need. We all want people who are real and jump in. The outcome may not be what we expected or desired but no one can say Charlie, Pam and Jim and those who supported them did not put up one hell of a fight.

 

Charlie was the greatest warrior who holds a unique place in all of our hearts. His mark will be with us for years to come. I am certain anyone who knew him has a story they hold close about a Charlie adventure, comment, or hug. Those of us who knew him will carry his memories with us. He will be with us for years to come; I am not the only one. Anyone who got to know him is now profoundly changed.

The Warriors
by Dianne Byrer

There's an elusive enemy
Many fight and are set free
Some are left to press on valiantly
These are the warriors
These are the warriors
They've seen friends on either side
fighting on to finally die
They live where the strong don't all survive
They are the warriors (They are!)
They are the warriors (They are!)
They hold their heads up high
When they fall you hear a battle cry
Their battle rages on
They are the warriors (They are!)
They are the warriors (They are!)
They stay relentless in their fight
Bravehearts, Brave souls
These are my heros
Our mothers and daughters
Our fathers and sons
They are the warriors
Pioneers breaking new ground
Determined to beat it down
Going farther than those before
Crashing through unheard of doors
Their voices grow silent, but they live on
They are our heros
They are our heros
Their voices scream out in our hearts
We hear their voices in the dark
Telling us the fights not done
Til the fight is won for all
Til the fight is won for all