Riding for Roses

I had a powerful experience today. Spencer and I got to read parts of the LAF Manifesto for a new video. It will premier at the Livestrong Gala on May 19, 2006.

After Saturday’s taping, I assumed I would take Spencer in, run him through wardrobe, bypass makeup, drop him off in the studio, and then have Spencer ask me to leave. This is cool. This is the plan. When we arrived, someone on the crew asked me if I would mind reading. While Spencer watched Tom and Jerry cartoons, I filled out a release, went through wardrobe, got a little makeup (my face being not as naturally delightful under the lighting as Spencer’s, required a small amount of makeup), and got a script which lists a bunch of phrases from the LAF manifesto.

The plan is simple. Spencer will sit in my lap. They’ll tell us where to look (usually right at the camera). The director will say who should talk read one phrase from the manifesto and whoever is to talk repeats using the same emphasis and timing as the director. The lines are out of order, and free of context. They are picking the lines they think will work for us in the final product. The lines are not the same as the script because since the printing of the script, they’ve changed their minds about who will say what. The phrases are out of order. Sometimes we repeat the same phrase a couple of times. Sometimes they shoot a different angle or zoom of a phrase we said earlier. The plan is fluid. This does not matter since we get fed the lines one at a time. I get the first couple of lines and then Spencer starts. After a few lines, I am basically in a trance. It is almost overwhelming. Each phrase triggers memories of Spencer’s diagnosis, treatment, and spirit.

Knowledge is power.

I remember sitting with Rachel in the office on the Green Unit at Children’s Hospital of Austin, going over our notebook of information about cancer treatment and the first ever treatment roadmap.

We believe in life.

Enchanted Rock. The first time Spencer climbed it. Carrying Spencer around the loop trail, making a new acquaintance, and sharing stories about cancer. Enchanted Rock. Caving with Spencer, and Spencer hiking all the way without being carried.

Acknowledge the rage.

Sitting up late at night. Mad. Scared. Thinking how unfair it is. Turning that energy into motivation to raise money, to write advocacy letters, to give something back.

Unity is Strength.

Friends. Everywhere. All the time. Taking care of Jacob. Making meals. Driving Rachel to the hospital. Sharing hugs. Just being there.

With kids, friends and neighbors.

Our glorious misadventure getting stuck in a creek bed and sharing Spencer’s story.

Knowledge is power.

Calling and emailing a friend who is a pediatric oncologist and asking her questions about Spencer’s diagnosis and treatment. Researching ALL on the web. Investigating long-term side effects of chemotherapy.

Take no prisoners.

Spencer, bald and wearing a surgical mask to protect himself from exposure, walking around Central Market asking people for donations to support cancer survivors.

Unity is strength.

Thanksgiving dinner four short weeks after Spencer was diagnosed. Having family close. Spencer’s cousins making him feel normal despite all.

Attitude is everything.

Spencer moon faced from steroids, 10 pounds of weight gained in three weeks, not always able to walk from his bedroom to the kitchen table, and he has a request. He wants to restart his martial arts lessons.

Live Strong.

Spencer wearing 52 wristbands on his arms and legs, giving them away to anyone and everyone. Spencer giving Livestrong wristbands to Grace and Isabelle Armstrong after Linda Armstrong Kelly signed his copy of her book.

We finish together. The director says, “How about together? Rob and Spencer. Live Strong when I say three. 1. 2. 3.”

Live Strong.