“All we have to fear; is fear itself” – Franklin Delano Roosevelt- Fireside chat – midst of the Great Depression
“Ye, though I walk to the valley of the shadow of death, I shall fear no evil” – Psalm 23:4
What is fear? We all have felt it. It is the deep sinking knot in the pit of your stomach. It is the cold clammy creeping sensation of unanticipated unsought solitude. For each person it’s different. Perhaps it is the sense of terrifying height atop a cliff wall, or the sense of unscalable depth at the bottom of a bottomless hole. Stephen King the master of many a fearful mental image has written that it is his ability to write down his deepest fears that has brought him freedom from fear; so here are some fears that have floated unspoken through the hallways of our home these past few weeks.
For Evan it has been the fear that he would die; fear that a second unanticipated procedure would either end his life prematurely, or that the cancer might overwhelm his entire body during the time he was asleep for the operation. It has been the fear of IVs, of pain and discomfort, the fear of not being able to grow up and fulfill the dreams of an eight year old. It has been the fear, that if he shows his fear he will cause his parents additional anguish. It is an unspoken thought that he may have committed some unknown transgression that he is being punished. All of his fear has no foundation, all this fear has no rational basis, all this fear that has been borne as a weight of self determined isolation. It is profoundly sad, and heart breaking, to observe a normally vibrant and effervescent child pass through this valley. But he has hope.
For Evan’s sister it is her potential loss. It is the depth of despair brought on by a lack of knowledge, the awareness of whispered conversations. It is held in a heart filled with compassion that cannot find the right avenue of expression. It is held in the desire to generate attention seeking events so as to draw the family to activities and spectacle that will move the focus from death and illness toward light and life.
For Evan’s grandfather fear is held in the knowledge of 83 years experience. That life is not fair. That people die. That children can and do suffer. That the power found in and through prayer, while profoundly strong, can leave us with the hollowness of our minds and bodies ravaged in this world.
For Evan’s parents it has been a gamut of thoughts and a gauntlet run from moment to moment since a diagnosis was confirmed, then a scan returned negative, followed by a recommendation for surgery that seemed to be unnecessary. The core of Evan’s parent’s fear leans toward post-surgical issues. What will be the extent of physical limitations? How much muscle will be taken? What will be the long term physical challenges?
The fears of the parents are remarkably different than those of the other members of the family. Fear affects each person individually, running rampant in isolation, stamped out within a unified community. While the cancer is real, this operation is not so much life and death, but rather a tool of confirmation – “we got it all and this is to ensure that fact” The doctors are great and the staff is better.
Fear, like sin, does not operate in the light, it prefers darkness and solitude to really function well. Today we met three beacons of light at Evan’s pre-op clinic visit at the Duke Children’s Center. First we met Ms. Bridgette, a nurse practitioner. She is the anesthesia team liaison. This past year she was part of a mission trip to Sierra Leone, and has a wonderful sense of humor. She had us quickly laughing as she asked questions and shared all the details surrounding anesthesia for surgery. Ms. Bridgette then introduced us to Ms. Darcy.
Ms. Darcy is a tour guide for children heading toward surgery. Ms. Darcy spent over an hour giving Evan a tour of the Surgical Suite; she took us from arrival to waiting room, from waiting room to pre-op, then from pre-op to surgical prep, from prep to operating room, and from operating room to recovery. After the tour she took us back to her office and took Evan step by step through his entire procedure spending extra time on exactly how an IV is started (Evan’s most focused fear).
After we finished our visit Ms. Darcy, we met Ms. Laurie, a social worker connected with the pediatric oncology team at Duke. She had heard a lot about Evan from Dr. Greiner and wanted to make herself available to us to answer any questions we might have. After 5 minutes with Evan, he had another friend who loved hearing about his happy memories from his trip to Kenya.
Evan’s day started out with an anxiety level of 7, and thanks to the light shed by his new friends, it ended at a level of 2. From his parent’s perspective, Evan went from quiet and pensive, back to a very relaxed and rambunctious 8 year old boy. All boy, all the time; just the way we like him.
We need to give a special thank you to all you who have kept Evan in your thoughts and prayers; to those of you who have called with a thoughtful word of understanding, or given experienced counsel. We have felt the real support of your prayers. While there are times when we have to walk this road alone, your support sheds light on our path, and your love encourages us to not despair but to live this life in abundance.
Evan would like you to read this psalm. He would like you to see how the words are so beautifully put together to capture peace, fear, strength and hope. Whether you ascribe to Evan’s understanding of origin of the psalm, it is the ability of the writer to convey the images in a way that transcends the bounds of organized religion. Truly children know God in their hearts better than any PhD can in their head.
The Lord Is My Shepherd
23:1 The Lord is my shepherd;
I shall not want.
2 He makes me lie down in green pastures.
He leads me beside still waters.
3 He restores my soul.
He leads me in paths of righteousness for his name's sake.
4 Even though I walk through the valley of the shadow of death,
I will fear no evil,
for you are with me;y
our rod and your staff,
they comfort me.
5 You prepare a table before me
in the presence of my enemies;
you anoint my head with oil;
my cup overflows.
6 Surely goodness and mercy shall follow me
all the days of my life,
and I shall dwell in the house of the Lord forever.