Two million, one-hundred-three thousand, eight hundred, forty minutes. That is how long it has been that I have known about gliomatosis cerebri, the beast that ended my son’s earthly existence but can NEVER end his spirit. On this day four years ago I was taking TJ to the ER with my sister at my side. About five hours into our…
Most people who have experienced the loss of someone close to them could probably tell you the signs that a departed loved one is near- the ones “they” tell you about. “They” are the folks who are in tune with this other dimension where our parents, children, siblings, and friends now exist. I know some will roll their eyes but…
August 9th. Today. Thirty-one months have marched by since TJ left this plane. Marched? Crawled? Eeked? Which word is the best? “Eek” sounds right since that gives me a sense of just barely getting by, like me most days. “Crawled” sounds good since the days without him are long. “Marched” seems right too though, because marching feels harsh to me…
Where do I start today? I don’t really know. I’m very emotional today. It is the anniversary of the death of a good friend’s son who also had gliomatosis. I grieve for my friend. It is this friend and this son whose story I found nearly four years ago in my online quest for any information on gliomatosis. Her son…
Friday the 13th. People have different reactions to this day varying from disregard to going along for the fun of a silly superstition to actually believing it’s a bad luck day. My oldest brother, Stephen, was born on Friday the 13th and it was the start of the earthly life of a beautiful human being. And so it is never…
Wow, it’s been a while. Much has happened. Much is changing. To start with, Rachel graduated high school. We are so proud of her and can’t wait to see what the future brings as she studies choreography at Bennington College. Susiy went to Arizona on a service project with George School to help at a school on a Navajo reservation…
Tonight I was sweetly and touchingly reminded that not only was TJ’s spirit here on earth as a unique and inimitable being, but also that he is simply no longer in form, no longer in a physical body. Well, duh. But there is a bigger point to this- that even though he is not “in form” he still IS. He…
Facebook did it to me again. Those memories that pop up everyday. I don’t hate them. Truly I don’t. They bring me daily reminders of my sweet TJ and happy times we had together- our dates, his singing, him playing with his siblings, his Lego and origami creations, they are all great things. Normally (by which I mean 50-60% of…
Today has been a lousy day. Everything at work feels like “one more thing” added to the pile. I’ve hit a point where I actually cried in front of our new administrator. Sometimes I am so tired of healthcare. You have to spend so much of your time either 1) doing someone else’s work, or 2) documenting every inch you…
As I sat in terminal D four days ago at the Philadelphia airport I couldn’t help but think of the last time I was here. Our entire family was heading to Maui for TJ’s Make a Wish trip. It was a happy time. Happy knowing TJ would get to see the banyan tree. That tree was the reason he chose…