Tonight's picture was taken in May of 2006. The look of excitement on Mattie's face was the fact that we transitioned him from his crib/toddler bed to a twin size bed. The head and foot boards of the bed in this picture were constructed by Peter's maternal grandfather. Peter's grandfather built two bed frames, one for Peter's mom and one for Peter's aunt. We have both frames, and Mattie was actually very excited to be sleeping in a bed that had the bed frames his dad and grandmother both used growing up! I was very hesitant to transition Mattie into a "big boy bed." It took so long for him to master how to sleep, that I was afraid to mess with what was working. But just like everything else, Mattie let me know when he was ready, and I was usually pretty good at following his lead.
Quote of the day: One life. Live it. ~ seen on a bumper sticker of a car
As I was driving around town today, I passed a car with the bumper sticker, "One life. Live it." At first I did not pay much attention to it, but then these four words seemed to be spinning around in my head. Somehow I couldn't help but think of Mattie and how he was forced to live his one life in 7 short years. Perhaps life shouldn't be measured in years, but instead in how it is lived. If that is the case, Mattie lived a full, bold, loving, and happy life. Well that is of course until cancer took over. However, even battling cancer, Mattie showed a remarkable ability to energize others, to suck you into his world, and to genuinely care about other people despite his own issues.
I spent most of the day at home trying to put thoughts together for a script I am writing for May 20 (TWO DAYS BEFORE THE WALK). As a member of the Georgetown University Hospital Pediatric Parent Advisory Board, I have been asked to testify at the Hospital's annual medical grand rounds. My understanding is that 500 or more physicians and medical professionals attend this event. There will be two other people speaking in addition to me, and we are each given 12 minutes to convey our feelings about family centered pediatric care. Or in other words, from my perspective (and the mission of the Mattie Miracle Cancer Foundation) the importance of understanding the psychosocial needs and support of children and their families with cancer. At first I was going to sit down and start writing about Mattie and our hospital experience. However, I decided to step back and reread portions of the blog. In fact, I plan on combing through a year's worth of blog writing to see what important insights I shared throughout Mattie's treatment process that I can integrate and highlight in my script. Needless to say, though I have lived Mattie's ordeal, it is trapped somewhere inside my brain. Reading the blog postings from 2008 was VERY overwhelming. In many ways it was like reliving a trauma and being placed right back into the scene of the crime.
Though I write each and every night, I did find writing Mattie's eulogy very intimidating. I struggled with it for weeks and then one morning as Ann flew to Boston to attend her father's funeral, I sat at her kitchen table and simple wrote for hours. This script is also a labor of love. Most likely because I put a great deal of pressure on myself to write the PERFECT script. The script that will capture Mattie's life and honor his memory. In many ways, this is why planning the Foundation Walk becomes an all consuming process for me as well. I do it for Mattie, and for those of you who did not know how Mattie and I related to each other, then you will just have to take my word for it when I say that Mattie and I together were intense! We fed off of each other, we had the same temperament and disposition. The walk, scripts, advocating on Capitol Hill, and so many other things are symbolic ways in which I keep Mattie's memory alive. So to me that memory is sacred and as such, it becomes hard to know how to capture it in writing!
I spent a good portion of the day crying and thinking about what we survived and lost. In addition to the script, I am lucky enough to have the assistance of Mattie's technology teacher, Mary, help me with a short video I will end my testimony with. The video will show pictures of Mattie from birth until death. The pictures will move to the music I selected. I chose a song called, "I'll remember you." Shortly after Mattie died, Mattie's preschool director's daughter sent me this song. A friend of her's wrote it, and as soon as I heard it, it brought me to tears. As I was designing this video for the doctors, I originally was going to show the pictures moving to ABBA's song, Dancing Queen. This was Mattie's favorite song at the Hospital, because literally he was learning how to walk again with this music in the background. There were days we even migrated around the fifth floor of the hospital singing it. Needless to say, we caused a commotion and got a lot of attention! However, Dancing Queen is an uplifting song, and it did not quite capture the sentiment I was looking for. I want physicians to understand that they don't only scientifically treat patients, but they are treating a person. Mattie was a bold person, and a little boy full of life. His cancer had ramifications on him and on Peter and I, and I am hoping the song tied to the pictures pulls on their heart strings and frankly makes them uncomfortable. Uncomfortable to me is good from an educational standpoint, because with discomfort, brings change and the willingness to perhaps do something differently.
Later this afternoon, I visited with Mary, Ann's mom. She was happy to see me. I told her she saw me three days this week, and that she is going to get tired of me. At which point one of her caregivers walked into the room and we all started talking together. The next thing I knew Mary blurted out "NEVER." At first I had no idea what she was saying to me, since this wasn't in line with what we were currently talking about. But what I realized was she was responding to my initial statement. She was telling me she is never going to get tired of seeing me. Mary appreciates my friendship and what I admire about her is she is able to verbally communicate that and shows concern about my wellbeing. Do I think Mary and I would be close friends if we both did not lose our son's to cancer? Perhaps, but I do think this commonality serves as a strong foundation of our relationship.
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