Twelve young ones on benches at the long table on the porch, are given paper and markers and told to put their name in the center, and to write or draw in each corner of their page their favorite ice cream, animal, super hero, and game. I’m at the end of the table assisting seven year old Annabel. She’s the most newly diagnosed of this group. Her delicate fingers are shaking and she can't get the cap off the red Crayola marker.
Rhonda, the facilitator, asks each child in turn to hold up his or her sheet of paper and to share with the group what’s on it. We four counselors also are invited by Rhonda to share our names and faves.
As a group, we quickly learn and note that Lina and Brittany and I all like cheetahs, Felix and Janey have the love of pistachio ice cream in common, and that all twelve of these kids came on busses from the same hospital to this session of We Can Family Camp.
What is slow to dawn on the kids is that what makes them feel so set apart from other kids down the mountain - whether at school, church, park or supermarket - is what they ALL have in common here: some form of pediatric brain tumor. What sets this population apart even from other cancer survivors is that the central nervous system doesn’t have as comprehensive a back-up system as some other body parts. When you’ve had some portion of your brain carved out to save your life, it’s a given that you’re going to lose some function - whether eye sight, memory, sensation, cognition, speech, hearing, or motor skills. The crap shoot of brain cancer leaves a bigger footprint than a Yetti.
I hate cancer. It is an equal opportunity destroyer. These kids are in an even more select group, in that they all come from families where Spanish is the primary language at home. Moms, dads, siblings and patients often have to jump hurdles just to get information in their native tongue.
I'm privileged that I get to play with these kids and their families and to practice my Spanish during these family camp weekends held at Camp Ronald McDonald for Good Times in the mountains above Palm Springs. Still, I wish there were no need of camps for kids with life threatening diagnoses.
When Dr. Friendly comes across the leafy path to the Kid’s Kitchen Porch, our group is ready with questions generated by these bright, curious, and compromised children. With him are the camp director whose nickname is Tux, Ashley, a surgeon, and another pediatric oncologist named Leah.
These kids think outside the box. Beyond “What’s your favorite color,” which they do ask, they want to know how Dr. Friendly could tell that they had a brain tumor. Deftly, the good doc turns the question around. He knows nearly all of these young ones personally.
“Kyle, how did you first know you were sick?”
“Head ache... and I couldn’t see straight. I fall down a lot.”
“Right. And do you remember that we took some pictures of what was going on inside?”
“Yah. They see choomer in my brain.”
“Yes,” Dr. Friendly continues, “we saw the tumor pressing on parts of your brain that you needed for seeing straight and for walking without falling down.”
“My head feel much better right away after you take out the choomer.”
Several others share their experience, but by this time, I’m just inside the kitchen - out of the wind - with Annabel. Only the screen door is between us and the rest of the group. She just can’t warm up - even with her heavy coat on and my wool shawl wrapped around her and over the top of her head. Her hair is so thin; her face so puffy from the steroids. She is shaking with cold and wanting to “go home.”
“I hear that you want to go home, Annabel." I am kneeling beside her and have my arm around her shoulders. "In about thirty minutes we’ll all be going back to the dining hall and your mom and dad will be there. For now, we're going to stay out of the wind. Can you hear Dr. Friendly and the others.?”
She shrugs.
Blowing bubbles distracts and delights her for a while. She giggles softly and masters the angle of how to blow to make a blizzard of bubbles. I see group, and hear some of the discussion. I'm guessing Annabel isn't hearing much beyond the hum of the refrigerator next to her. Mostly, I’m energetically aware that the kids are cozying up with one another... and I don’t think it’s the cold morning that has brought them closer, but rather the recognition that they are among people who understand and care deeply about what they’re experiencing.
Saturday night ends with a dance party. The joy on the faces of parents watching their kids break-out in wild gyrations - just being KIDS, makes this the best paying volunteer job I've ever had. Smiles are the coinage. We are all millionaires.
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