Recently VM and I were invited to speak to a class of physical therapy students at a local college, taught by VB’s super-steller therapist. These kind of invites give VM and I a chance to refine our “cancer elevator speech” — which still involves an elevator that would have to travel somewhere near Mars to provide us adequate time to share. As we were circling the stratosphere, one of the students raised a question as we talked about the reality of an uncertain future for your child.
“…How to do reconcile….I mean, doesn’t this whole thing want to make you take him to Disney World every day forever?”
My first response was somewhat realistic and mundane. Even if we wanted to we can’t possibly afford that — actually, we can’t afford even one trip to Disney world at the moment, let alone multiple trips or a permanent residency. Then there is the delicate balance of creating a wonderful life for your child whose time you know might be limited, while at the same time retaining some semblance of your own life and interest, be that jobs, hobbies, friends, etc. Then there is the question of one’s sanity after more than one round of “It’s a Small World After All”….
However, it was after the class had ended that the real answer dawned on me. Any parent has to weigh and prioritize the type of life they want to provide for their child. Certainly we are influenced by our past experience and the knowledge that the future is perhaps more unknown for us than the average family. However, our response to that is not to rush towards outlandish visions of a super-life that would blow Oprah Winfrey out of the water. Rather, it is the ability for VB to have simple experiences that most take for granted that serves as our “parenting sweet spot”.
After the annual pilgrimage to VB’s personal mecca (Disney on Ice) and some “special TV time” watching Olympic figure skating, he decided with all the certainty a 5 year-old can muster that a career gliding alongside Goofy and Ariel was his destiny. Without looking back and with a fair amount of glee, he has spent the past six weeks launching onto the ice with wild abandon, falling, laughing, and rising to do it all again. The walker has been tossed aside as he shuffles along the ice, reminding his scared or nervous peers that “there’s no crying in skating!”
These moments, dear students — that’s Disney, a trip to the moon, a winning lottery ticket, and a meeting with your musical idol all rolled into one. It is the crushing beauty of a normal childhood that is the remarkable world we have been able to give our son. We do so because we know we almost lost the chance. We do so because we don’t know how long our chance will last.
In the end it is the simple things that matter — relationships, fun, play, love. What a miracle to know they are right at our fingertips, and how satisfying as parents to know that, in spite of everything, they are present in the life of our son.
Author’s Note: I hope my readers, community and friends will once again support me in ensuring that there are more magical moments for my son and others who are afflicted with cancer — through supporting me in the 2010 Boston Marathon Jimmy Fund Walk. To donate — or even join our team — please click here, and watch the blog for an updated “2010 Walk” tab at the top of the screen for more info!