Friday, March 13, 2015

Friday, March 13, 2015

Tonight's picture was taken in March of 2009. Mattie was home between treatments, which was a rarity. We were upstairs and playing in his bedroom, which had very little space to move in because his room was packed to the gills with gifts and toys. All wonderful things he accumulated from the hospital and his care community. Each admission brought more and more items into our home. Which were needed and appreciated by Mattie to keep him engaged and stimulated but they were beyond overwhelming for me to process and keep organized. Since Mattie had NO outside stimulation, including NO school and few if any playdates and visits, these material items became vital to his existence. Right next to Mattie's foot in this photo was an aeromattress. It was on the floor because this was where I slept when Mattie was home.... right by his side, in his room. Mattie needed constant supervision and assistance, even in the middle of the night. Particularly because he was hooked up to IV's and all sorts of pumps. 


Quote of the day: I never made one of my discoveries through the process of rational thinking. ~ Albert Einstein

At the crack of dawn this morning, Peter and I got up, ready, and checked out of our hotel and headed to the conference hotel. We were on point to display our research poster from 7am until 1pm. Each time we take on such an adventure, it is a learning experience, in which we come away with lessons learned and next steps. I can summarize the experience by saying that we were the only childhood cancer oriented poster at the whole conference, but then again, there were NO childhood cancer sessions or tracks at the conference. Meaning we were the ONLY childhood cancer focused type presentation at the whole conference!

The property this conference took place at in Hollywood, Florida was noteworthy. It was called the Diplomat. What a resort property by Westin!!! The irony is just about a block away my cousins used to have a condo! Peter and I took Mattie to this condo twice, so in many ways being here was even bittersweet. As we passed the condo today, we couldn't help but think about those days and it was hard to accept that Mattie was gone. It is a hard pill to swallow that our son is gone and while we have to accept this reality, a major cancer organization doesn't even seem to address childhood cancer issues. As if they are non-existent! Accept of course we know better.


This was one of the doors in the Westin. Check out the beach ball that goes around with you! It is part of the decor and permanent display. 

The beauty of the Lobby..... Open, bright, and with a glorious fountain!

After the poster session today, we met with my long time friend and colleague Nancy and her husband, Marv for lunch. They live part of the year in Florida and the other part in New York. Nancy and I met years ago through our mutual work at a professional association and became instant friends. When Mattie was diagnosed with cancer, Nancy became a loyal and faithful blog reader, and remains one to this day. As I tell Nancy often, she is my biggest fan and cheerleader. In addition to a lovely lunch today, Nancy surprised me with several gifts. One of which was beautifully touching, because it is acknowledging Mattie's 13th birthday which is fast approaching. A 13th birthday can have great significance, from a spiritual and societal perspective. It is hard to know that Mattie never made it to this mile marker, and that we have to carry on his legacy without him. I appreciate Nancy understanding and acknowledging this in so many symbolic ways. 

I end tonight with a photo that Peter captured outside our plane window. In fact I am typing this from the plane. This is novel to me. But Peter connected us to the internet on the plane, which I greatly appreciate, because by the time I get home I have a feeling I won't be in the mood to write a blog.