ABSTRACT: Merry Christmas and a Happy New Year, Evan is doing well from all appearances, we know little more than we did 12 months ago, we are thrilled to be spending another Christmas together as a family, and the world continues to turn.
BODY:Merry Christmas, Joyous Noel, Happy New Year. These words are flung about like tinsel on the tree at this time of year. We look back on this past year in amazement, awe and gratitude. Things have not gotten easier, in many respects they are in fact more difficult. As a family we do not have answers to questions of health, finance, or even midterm future events. As a part of Evan’s medical team, this year has brought more questions than concrete answers. And as a nation we struggle with the concept of living as one part of a bigger world. Is it any wonder then that we look to this season as a way of recurrent Hope in our lives?
Not a day goes by that some acquaintance, associate, friend or foe asks the fateful question, and “How do you do it?” How do we do what? Continue to live in a light of Joy, Love and Peace. Seek to move forward each day in the shadow that Evan may die. Perhaps the question would be stated in a less euphemistic but direct: How do you continue to live when your son IS dying? It is the verb that is the key. It is always the action that drives our thoughts. It is the motion that pushes the fear to the forefront of the mind and demands the attentive nature of the catatonic. How is it that we are able to move forward when all worldly indicators tell us to stop living and pose for some neo-modernistic American Gothic perhaps entitled: Cancer’s Ravage.
We cannot hope to share all the lessons we have learned in these past two years, we cannot relate the visions and lessons of our struggle in a manner that would have the same meaning for you as it does for us. We are different from you, and the lessons for us are not the lessons for you. We are all each unique, a single specimen. We can however point you in a direction that you might seek out if you find yourself in a place of pain, discomfort or illness. Let us tell you of a place where Hope can be found, a place where Peace resides, a place where Joy is unrelenting even in times of great sadness and sorrow. It is a place inside your heart, a place often hidden by the mind, but a place that exists for each and every one of us.
Karl Marx once described religion as the opiate of the masses, a drug that makes the challenges of life tolerable for those not seeking the enlightenment of self fulfillment in a worker’s paradise. In this post-Christian era those who profess belief in Jesus as savior are often decried as uneducated or worse. Emphasis on following dogmatic and doctrinal rules has given way to doing what feels good so long as it doesn’t hurt someone else. Tolerance of all others, their beliefs and cultures, has challenged the role of social and cultural mores as espoused by the ‘church’ as an anachronistic thing of the past that hinders others ability to pursue their heart’s desires.
What we would share with you is the place of Faith in our lives. There is no better time of year to share the concept of Faith than Christmastime. We do not offer religion as an opiate but rather tender the thought that it is our Faith in God that has given us the strength to push forward through dark times and fear. We find that we have been touched deep in our souls by a Creator that sought our self-awareness and appreciation first of the creation, the universe that houses us, and upon those revelations that there are times, places and spaces beyond our ability to grasp put there for all eternity to be grasped by those who try to fathom a creator beyond our ability to ‘know’. His ambassador to us is Jesus. The ambassador’s portfolio contains documents attaining to his life and teachings, testimonials’ to miraculous events, and a promise of ever-present assistance.
How do you define intangibles? What is Faith, or Hope or Peace, or for that matter Love? Our illustrations often fall short in their inadequacies or faults, these concepts defy our abilities to box them up into bite size morsels; but we can all identify them when we see them. You are able to look inside yourself for your desires for something better: HOPE; You look inside yourself to desire for no conflict: PEACE; you are able to understand the warmth of a hug: LOVE. But what of your faith? We choose to rely upon this simple explanation: Now faith is the assurance of things hoped for, the conviction of things not seen. It is the belief that an uncollaterized loan will be repaid, it is to trust in a promise. It is the defining element in a true friendship; that another unrelated person will have my best interests at the heart of their actions toward me.
Evan started the year in chemotherapy with no hair and our faith and hope were under assault. Peace was a day without nausea and joy was as fleeting as a snow flurry around Raleigh. One week later all that was erased, at least for 4 days as we travelled to California and Legoland care of Kids Wish Network who arranged for this remarkable vacation. In February, chemotherapy was stopped and Mom became the Head Athletic Trainer for the Carolina Railhawks professional soccer team in the Triangle area of NC. March was the first surgery of two this year. April was a culmination of 3 years work as Evan won the NCCSA Science Fair held in Wilmington NC and said no to additional chemotherapy. May came with new friends in LEGO at the new store opening in town and a near win in a brick build race with The LEGO Master Model Builder in the USA. June saw a Daddy/son trip to Chicago for BrickWorld and a visit with Kjeld Kirk Kristiansen owner and CEO of LEGO. July was a series of road trips to Nana and Poppa’s home and to Charleston to watch the Railhawks. August ushered in a return to school for Evan and the advent of Middle School. September saw a new mass developing on Evan’s back. October saw the new mass removed and began a new series of academic questions around what ‘it’ is or is not. November and December have focused on settling into school and staying on top of all interests musical, mathematical and engineering.
As we give thanks to a Creator for creating, and loving us enough to have saved us before we even knew we screwed up it is appropriate for us to let you know why we march onward. From where we stand, creation was not inevitable or random but an act of Love and Hope and Peace and Joy. From our understanding creation is like the application of graphite to paper making a 2 dimensional object: to create a situation in 4 dimensions (Height, Depth, Width and Time) requires the actions of an entity/entities operating in at least 6 dimensions (2 more than the average person can comprehend) We are like clay on a potter’s wheel, without the right work, we will have flaws exposed as shattering bubbles in the kiln of life, without the right work we will just be a lump of clay. But with the love, patience and craftsmanship of an artist we stand to be works of testament to the artist. Our choice is not to be chosen for the wheel; but to be malleable and workable in the artists hands; to admit to our flaws and to have those flaws worked out of us, so that upon firing, glazing and firing again we shall become worthy of retrieval from the workshop and become useful tools in the home of the Creator.
The gift we celebrate this season is not the gift of a baby sent to die for our sins, nor is it to celebrate the joy of giving and receiving the latest gifts. It is to celebrate that we are all available to be placed upon the potter’s wheel to be worked and to work with an artist whose knowledge and skill surpass our understanding. That our Joy in life is that we accept our role, fulfill it to the best of our abilities and in the place we are. Our Peace is found in the acceptance of the unacceptable, that despite all popular common culture we are not free to randomly choose our path for life. Our Love is found and kindled by the attention of the artist in our lives and in the common purpose of those around us we call friends. And our Faith is that all this is true to the best of our ability to grasp we have received assurance from the artist that His promises are firm, and that our Hope is centered on our desire to be the best workable material we can be.