The One That Got Away

Is it Chance that has me sit beside the young woman and her father at the table farthest from the stage, way at the back of the dining hall? The camp director is giving us a run-down on the day’s activities. I wince as the the air goes jagged with the microphone’s piercing feedback. Twenty-seven families and two dozen volunteer counselors register the toe-curling sound also. The young woman next to me does not. She sits placidly, her head supported by the chair, her slender hands with colorfully striped fingernails resting very still on the table. I touch and admire her meticulously manicured nails, and tell her I’m glad she is here. She does not respond. Dad speaks for her, saying N is very sleepy.

At a camp weekend sponsored by WE CAN Pediatric Brain Tumor Network, one doesn’t ponder or ask about the necessity for the wheelchair. One plunges in with light-hearted introductions. I cannot help but notice the single focus gaze emanating from this dark-haired daughter whose eyes are riveted on her father. There is no other communication between them save her continuous fixed witnessing of her father’s face, and his intermittent return of that penetrating contact. He makes small talk with the rest of us at the table. Mentally, I ascribe meaning to the look on the daughter’s face: Adoration. I will find out later, how much more meaning her eyes were conveying.

Introductions made, among the eight of us at table, the whole-camp game-fest begins. In the bustle of each table coming up with a team name, a song, and an animal sound, I register, but only dimly, that the mother has come to whisper into the ear of her husband. Shortly afterwards, the father, waves a vague goodbye, and prepares to wheel his daughter away from the table and out of the dining hall. Just before they exit, I again make contact with the quiet one, saying simply, as I imagine that she is going to their cabin to take a nap, “Qué duerme con los angelitos.” May you sleep with the Angels. I have an eerie premonition that I may have overstepped a linguistic boundary, as if Sleeping with the Angels may be a more permanent state for this fourteen-year-old girl child. Off they go, away from the noise and chaos of the dining hall.

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The crowd breaks-out into the age groups to which we’ve been assigned and the day’s activity periods commence. Parents gather in the dining hall, to meet with intuitive, knowledgable, and compassionate Dr. K, while social workers and volunteer counselors gather up each group of youngsters - some of whom are patients, others siblings, to find our rooms or outdoor areas where we’ll be for the next two hours.

The infirmary is an indoor space and mercifully air-conditioned. We five counselors and our nine 1.5 to 5-year-old charges appreciate the coolness. It is HOT in Livermore, this September Saturday. Our space has been set up with a play-dough table, book corner, building block/Lego area, puppets on the couch, and me on a blanket on the floor fingering chords on my guitar while the young-ones strum it. We make up all sorts of new verses for Wheels on the Bus, and Twinkle Twinkle Little Star.

One of our kids is virtually blind, so she takes in her world by bringing it within two inches of her face, or into her mouth. We must wash each toy she has tasted. Another, with double hearing aids, seems enamored of the sound of the running water, so runs to the sink in the main room at every opportunity to turn the water on, her giggles like a tinkling stream. It seems to soothe her, or perhaps just delights her having the power to make adults get up and turn it off. Drought consciousness makes us surprisingly spry.

Because the infirmary houses the nearest bathroom for a few of the other gathering places, its glass door opens and closes many times during our use of the room. The interruptions make it hard to sustain attention in any of the play areas. For some of our youngest ones, every time the door is opened by a counselor with one or more campers who need to use the loo, it is a reminder to her or him that s/he is with a bunch of strangers, and that mom isn’t here, but went out that door!

One of our youngest, E, a boy not yet two-years-old, is having a particularly rough time with each interruption. He runs to the door as it closes and he cries and cries. Each of us volunteers tries her/his best to soothe, commiserate, reason with, or distract young E. We are fortunate that his four-year-old brother is also in this youngest group. I ask C if he’s willing to give his little brother a hug. Little brother’s ear is on older brother’s chest. I imagine he is being soothed by the familial smell and the sound of C’s heart beat. I crouch beside the hugging brothers and begin patting a rhythm, chanting softly something I learned recently from one of my colleagues: “I can hear my heart beat, I can hear my heart beat, Listen to the rhythm of the freedom song. Listen to the rhythm of the freedom song. When I feel that beat in me, it can set my spirit free. When I feel that beat in me, it can set my spirit free.”

During the course of our two hour morning session, and two hour afternoon session, we sing that chant together more than ten times - each and every time the door opens and chaos ensues. C gets used to suspending his making snakes with play-dough or building towers with Legos, or strumming my guitar, to hug his little brother, or simply lets the little guy hug him. By the end of the day, many of the kids are singing the heart chant to themselves, patting their chests.

* * * * * * * * *

After dinner, the counselors transform the dining hall. First it becomes a theater, with chairs facing the stage, for the “We Can Do Anything” stage night. We never call it a “talent show.” Kids are empowered to tell a joke, sing a song, dance, play an instrument, hula-hoop, do magic - anything! Parents and counselors are moist of eye from the joy of watching the children shine and be loved-up by heartfelt applause.

Chairs are then put to the side and the dancing begins! Camp director Mike plays DJ and camp appropriate songs from Electric Slide to Macarena to Pharaoh Williams’ Happy Song are beamed over the loudspeakers and everyone who wants to dances, wielding glow sticks. During the dance, I have a wonderful conversation with a nineteen- year-old whose speech is very slow as a result of his brain tumor. I will my ears to slow down, so as to catch every word. He tells me of his triumph beating dad sometimes at games of chess. I observe he is also a gifted engineer, as he figures out the tricky part about fashioning the glow sticks into bracelets.

My beloved runs his Pun and Games activity on the big screen TV, to one side of the stage, to the delight of the non-dancers and resting, recovering dancers. By 9:30, the ones still standing are encouraged to head to bed to rest up for the final activity periods and all-camp-closing on Sunday.

As the counselors, social workers, director Mike, and the good doctor K are in the final debrief Saturday night, we are told that N's family has taken her home for hospice care. There is nothing more that can be done for her medically. There is un-ease in the air. This is the nightmare each family fears.

* * * * * * * * *

We live close enough to this camp in Livermore, that we easily drive home to sleep, which Pun does Friday night, while I am with our granddaughter. We both enter our home Saturday night - emotionally and physically spent. He returns to camp Sunday, while I tend to other commitments.

I awaken Sunday morning thinking about N. I am haunted by her look that lingers longer than any other mental snapshot of my fourteen hours at camp. I hate cancer.

Sunday afternoon, after church services, a friend and I share a bite to eat and a stroll. I confess to her my hatred for cancer and how emotionally wobbly I feel in the wake of the news that the one camper who got away from the table could not get away from cancer. The family delayed leaving long enough for N’s seven-year-old brother to go to his age group in the garden to say hello and goodbye. This is reported to be a huge breakthrough for him. So often, siblings of children stricken with this equal opportunity destroyer called cancer, pull so far into themselves, it’s hard to extricate them and learn what’s really going on in their hearts and minds. In the case of this sibling, he is spared a long period of witnessing in-home hospice care. I’m glad of his reach-out to his peers, and hope that he may return to a sibling camp.

Sunday afternoon the camp director calls us to say that N died Sunday morning. She is, indeed, sleeping with the Angels.

I’m left with the uneasy feeling that I wish there was more that I could have done to ease or acknowledge the family’s pain. I wish I could have seen the deep truths of anguish and wrenching goodbyes N’s gaze was conveying to her father. I wish I could have seen into the future and let the family know I would be holding them in my heart pocket. I am holding them, but it went unspoken.

The opportunity was one that got away.