Skin in the game

I don't know how many people are reading this blog, but I suspect that only a few of you will appreciate the significance of these photos. For those who are incredulous, there is nothing wrong with your eyes. That is Deb riding on a roller coaster.

For those of you without context for the meaning of this event, suffice it to say that only 10 minutes before this shot was taken, I said to Jim that I would not ride on any roller coaster, ever, and that I would be perfectly happy to go to my grave without ever having done so. I'm a big chicken when it comes to dropping, falling, swinging, racing, flying or anything else that is designed to create the sensation of your body leaving your soul. I've been, off and on, a frightened flier -- some of you might remember the story of how I threw my arms around a stranger and cursed in his ear while landing a small plane in Bozeman Montana during a thunder storm.

Those of you who know Jim well will appreciate the irony of his having chosen to spend his life with someone like me. Jim has a serious need for speed and he likes to induce terror, thankfully, mostly in himself, although lately the squirrels (and a now deceased king snake) who think they live on our property have fallen prey to his wrath. Jim has always thought of my distaste for amusement parks as a kind of minor character flaw, and one that, with the right kind of encouragement, could be corrected.

Until Saturday I was sure he was out of his mind. And then, while standing with my family, who were waiting in line to ride the kiddie roller coaster at Great America, with my girls jumping up and down in anticipation, and begging me to go with them, all of that changed. What right do I have, I reasoned, to refuse to do something that scares me, when I ask my 2 1/2 year old every week to come with me to the hospital and cooperate while strangers (now mostly friends) poke and prod her, give her poisons, make her wear masks and breathe sleepy air, and draw blood from her chest while she is watching? The least I can do is get my ass into the seat next to her on the damn kiddy roller coaster!

As you can see from the photo, I was definitely scared. But it was fun, even worth it, perhaps, given how I've felt since. It is one of the only beautiful things about having a child diagnosed with cancer that you get a chance to revisit how you are living your own life and put some more skin in the game.

On the day Dayssi was diagnosed with A.L.L. and we were admitted to the pediatric oncology ward, I bumped into an acquaintance whose child also has cancer, who happened to be in a room down the hall. When I told her about Dayssi she looked at me with tears in her eyes and told me that there are wonderful things that can come out of this journey. Even at that moment I understood that what she was saying had to be true. When your child is diagnosed with cancer, you feel trapped, forced into a house of horrors with no doors or windows. At the same time, you find yourself on occasion, in spite of yourself, feeling free. Priorities become clear. Self imposed responsibilities fall away effortlessly. You spend more time in the moment, loving and being loved by family and friends, and less time thinking about where you have to be next. You take your kids to the fireworks even though it might be too loud, and you might have them out too late. You have breakfast with your husband even though work is waiting. You take your own health and well being seriously because, for the first time, they seem important. And you ride the roller coaster.