because of katie

I have been quite honest (and perhaps repetitive) in my writing about grief and Ben’s absence. You might notice however, that I don’t write much about Ben’s cancer journey anymore. Those moments of trauma are so embedded in my soul that it is a daily choice/decision to try not to live in them. After Ben died, those images and scenes of terror could not be fought. They always seemed to win the space in my brain and heart. But I have gotten better at this, thanks to a lot of intentional grief work and time. For the most part I am better able to re-direct those memories now –  and for that I am thankful.

It is with that acknowledgement that I have the utmost respect for my friend Karen. Karen has bravely chosen (not without sacrifice) to retell her daughter Katie’s experience from diagnosis to death in her new book Because of Katie. She did this first and foremost so that medical professionals might better understand the journey an entire family takes when their son or daughter is diagnosed with childhood cancer. Her ultimate goal is that it would be required reading for all professional persons entering the world of pediatric cancer. But I also think it will be immensely helpful for friends and others who wonder what it is like for a family to walk this hellacious road. Karen is brutally honest, which I appreciate immensely, and articulates so many of the challenges a cancer and hospital life brings to those thrust into it. While there are many differences between walking through this with a teenage daughter verses a two-year-old son, much of it is universal to the experience and I am thankful she was willing to go back and commit it to paper. Thank you Karen!

Here is a passage from “Because of Katie” that resonated with me greatly:

One important thing to note about patients and families in the hospital setting is the fact that, no matter who we are in the “outside” world, we are stripped down to our essence in the hospital world.  Whatever our job, our title, our level of education, our socioeconomic milieu, our looks, our self-image, our background – none of that is of any value or importance in a health crisis.  We are only exactly who we are the moment the crisis occurs, nothing more or less.

Wealth, advanced degrees – even religious beliefs – nothing is of any consequence except who we really are, inside. What we think or what we believe will crack very quickly under the stress of our child’s illness; our essence, our deepest truth, arises out of the ashes of our former life.  The families you will meet will be stripped down to their essence.  They might try to flex and show you some of their more impressive qualities, but cancer is a great equalizer.

There are no shortcuts or advantages in the cancer ward.  We are who we are, and – as with old age – in the stressful environment that is a pediatric cancer ward, we become even more who we really are.  So it is good to be mindful that the people you encounter are, to a large extent, more naked than they have ever been, and more frightened.  They are facing life and death issues, some for the first time ever, and they are finding out that they cannot take anything extraneously with them on this journey.  My experience confirmed for me, that leading with love is the only way to make it through the hospital journey.