Sunday, March 8, 2015

Sunday, March 8, 2015

Tonight's picture was taken in August of 2009. As you can see Mattie was having a difficult time breathing by this point and needed constant oxygen. Despite the fact that cancer was taking over his body, he still played and wanted to engage with us until the very end, until it was no longer possible. But cancer definitely changed Mattie from being a happy and social little boy to one that was very sad, anxious, and preferred isolation. It took a great deal of strength for both Peter and I not to lose it at times because watching this tragedy unfold right before our eyes each day was unbearable. 


Quote of the day: It scares me how hard it is to remember life before you. I can't even make the comparisons anymore, because my memories of that time have all the depth of a photograph. It seems foolish to play games of better and worse. It's simply a matter of is and is no longer. ~ David Levithan


Peter and I have a busy week coming up. Monday and Tuesday we will be attending the Institute of Medicine's conference in Washington, DC and then on Thursday we fly to Florida and we will be there for one night to present our research poster regarding our National Psychosocial Standards of Care project at the National Comprehensive Cancer Network conference. Somehow it seems like a whirlwind of a week, on top of a whirlwind of a year. I am not referring to just 2015... I still seem to be catching my breath from 2014!!! This afternoon, our head psychosocial researcher is coming to stay with us for two days, which is why I posting today's blog early! Tomorrow, I will share with you the speech I will be delivering at tomorrow's conference. 

Today I received two glorious photos from my friends Denise and Dave. They are visiting Hilton Head and were thinking of us and Mattie. Clearly these are VERY Mattie type photos! To me this screams out..... the Mattie Miracle Sun!!! Mattie loved drawing the sun and he loved bold orange colors. Which is why the Foundation's symbol became the sun and our colors are predominantly orange and red.

Denise and Dave started their day with the sun and ended their day with a wonderful "Mattie Moon!" I am very touched in a way that so many people now look at the moon and refer to it as a Mattie Moon! What better way to remember and honor such a special boy? Mattie Moon has become a part of our community's common language. We all know what it symbolizes and we look up to the sky in hopes of seeing the bright moon that will help ground us and remind us that on some level Mattie is always present with us.