Starfish fingers feel the world. Myriad sensors on each tip. Digit-eyes devour information. This wonder child of six short years lost his vision quite recently to a nasty tumor. Rumor has it Neuro Blastoma is a sleaze-ball. I hate cancer.
Little N, a new camper, is adapting quickly. Making sense of his world. Mom and sis seem still to be reeling from the huge changes required in their family to watch out for and support N in navigating without the use of his big, now sightless blue eyes.
N delighted in playing the strum end of the guitar while I played chords on the neck end. Swift were the fingers that took in the shape, heft, and sound of the bass strings, comparing them to the smooth continuity of the nylon trebles. We played a couple of songs together and he graciously let a little girl in our Saturday morning session group have a turn at strumming. Vibrations from the body of the guitar filled his lap and torso while S plunked and tugged on the strings. N patiently awaited his next turn to explore different directions of strumming and various volumes.
Sunday, Pun the magician empowered N with a sound effects machine during the show, while counselor K and I alternately whispered play-by-play descriptions of the visual stunts in his ear. How quickly he mastered the array of buttons on the four by four inch device. He could “boo” or hit the “applause” key, make “farts,” “arrow twangs,” “YEE-HAAAWS,” “burps,” and “sawing sounds” with purpose and appropriately timed responses to what Pun was doing. What a privilege it was to witness the plasticity of neuronal connections around N’s lost visual cortex.
Once we counselors discovered the young lad’s ability to whistle, his skill was often rewarded. During the Sunday morning session, N whistled and promptly, as if on cue, two dozen wild turkeys ran/flew toward the Art Yurt where four volunteer counselors and eight campers were gathered. What a rush for N to suppose what we said was true: that his whistle brought those wild turkeys - all rush and gobble toward us. Perfect serendipity. N was beaming.
For WE CAN Do Anything Stage Night Saturday, R got up out of his wheel chair and walked across the stage to the thunderous applause of the one hundred strong audience of families, staff, and volunteers. C told jokes. L danced and sang. E, now fourteen and out of danger from his brain surgery, performed an amazing Bass Beat sound effect with his mouth and a mic to our delight. A performed an appealing singalong and dance routine to a Beyonce fave, and J, who three short years ago was so shy she would not speak or engage, shared a song she made up! So at home is she now in her body and in her new-found family of twenty-seven now familiar families that she speaks her mind, climbs trees with her strong side, bringing her weaker side along, shares her own therapy dog F, and bonds with the other hired-for-the-weekend therapy dogs!
Good byes are always heart-wrenchingly hard at the end of camp. We bond so deeply during a brief weekend. After brunch on Sunday, family appreciations, and summations from the camper groups of their favorite experiences during the Friday through Sunday Pediatric Brain Tumor Network Camp session, there is a slide show presentation. We all get to relive delights and triumphs. N’s mother gave him descriptions of each photo and video, while his sister huddled across the dining hall with her new-found friends. Siblings are given special attention too in the break-out groups. Camp changes lives for the good. Cancer affects the whole family.
Hate cancer.
Love camp.
No comments:
Post a Comment