Tonight's picture was taken during Halloween week in 2008 in the childlife playroom of the Hospital. You can see Mattie's mummy costume that he selected for himself, and next to Mattie was his big buddy, Brandon. Brandon was receiving treatment that week within the Hospital, however, despite being in-patient, Brandon participated in the festivities and was quite creative with his costume. He was a great pumpkin! It is ironic in a way that a six year old and an 18 year old could be such good buddies, considering their vast age difference. But they were good for each other, and as Mattie told Toni (Brandon's mom) toward the end, "Brandon is my best friend!" While fighting cancer Mattie needed a friend who understood, who lived the process, who knew what it was like to feel sick from chemo, to not want to be around people, and to just accept him for however he looked and felt. Brandon was that friend. In all reality, I learned amazing life lessons that 15 months in the Hospital.
Quote of the day: I heard quite often men don't cry, though no one ever told me why. So when I fell and skinned a knee no one came to comfort me. And as I grew to reasoned years I learned to stifle any tears. No pain or setback could there be could wrest one single tear from me. Then one long night I stood nearby and helplessly watched my son die. And quickly found to my surprise that all that tearless talk was lies. And still I cry and have no shame I cannot play that big boy game, and openly without remorse I let my sorrow take its course. ~ Ken Falk
I selected this quote tonight based on some commentary I heard on the radio this morning. The radio host was telling her audience that a well known country singer is dressing up for Halloween. He is dressing up as Batman and his son will be Robin. She was clearly impressed that this singer was spending this time with his son and was truly enamored by this notion. She literally proclaimed him as a "great dad" on the radio! I listened to this hype and simply laughed. I am not downplaying this gesture, sure, a parent doing something fun with a child, and participating in such an activity are important for the relationship and the connection. But that alone doesn't qualify one as a "great" anything, much less a great parent! Which brings me to tonight's quote.
Men are socialized in our society to be the solid ones, the tough ones, the one's who show NO emotions (especially crying), and the even keeled ones. I am not sure who this stereotype is helping in all reality. I do think that men and women are naturally hard wired differently, but it is also difficult to distinguish the origin of these differences when societal forces condition boys and men to be a certain way. I do think that cancer however evens the playing field. Whether you are a man or a woman, when your child has been touched by cancer or a life threatening illness, crying, anger, rage, guilt, and sadness happens! The reactions to having cancer are gender neutral and instead they are simply HUMAN.
I received an e-mail from Kristen today. As many of you know, Kristen was Mattie's oncologist and through this ordeal has become our friend. Kristen forwarded me the link below and wanted to alert me to the fact that the Food and Drug Administration (FDA) has advisory committees, and these committee meetings are open to the public. Of particular interest is the pediatric oncology subcommittee on the oncologic drugs advisory committee. The next meeting is on November 30 and runs from 8am until 5:30pm. The public is welcome to attend and to make oral presentations (if you notify the committee prior to the meeting). Kristen is aware of the Mattie Miracle Foundation's desire to become advocates for more effective treatment options for children fighting cancer. Keep in mind most of the current pediatric cancer drugs are over 25 years old, and only one new drug has been FDA approved in the last decade for children. Frankly I am not sure it is common knowledge that these meetings are open to the public.
http://www.ofr.gov/OFRUpload/OFRData/2010-27322_PI.pdf
This morning, I headed to the train station to pick up my friend and colleague, Nancy, who is in town for a conference. Nancy found me right away and we talked for 45 minutes straight as I brought her to the conference hotel. Nancy began the conversation by telling me how much my writings and blog means to her, and then she wanted me to know that she is in "awe" of me and what I have accomplished. Nancy had me reflect on my days in the Hospital and just how overwhelming those days were. But this cancer fight wasn't for just day or so, this was for 24 by 7, for over a year. I naturally know this on the physical level, since I feel the ramifications still of living life like this, but to emotionally reflect upon this devastation is overwhelming. Nancy is getting together with Peter and I for dinner tomorrow night, and this will be her first time meeting Peter. She never met Mattie, yet through the blog she feels as if she always knew him.
I met up with Ann and her mom, Mary for lunch. This was Mary's first time out of the assisted living facility since she was transferred there last week. It was a beautiful weather day, and I know that Mary appreciated being outside and to feel the warmth of the sun. These are things we take for granted, until you live in an institutional setting, and live with only climate controlled air! Toward the end of the lunch, Mary and I had a chance to chat together, and Mary said life is hard enough, but it is too hard when you lose a son! I couldn't have said it better myself!
After lunch, I was walking back to my car, and ran into a homeless woman asking people for money. The majority of people who passed her did not acknowledge her nor did they give her money. For the most part, Peter and I contribute to different charities, and I rarely give money to homeless individuals that pass me. However, this woman caught my attention. She held up a sign that she was trying to support four children, and had a very haggard look on her face. So when she approached me, I stopped to talk with her. I did land up giving her money. She said that she hoped God blessed me, and I wished her the same. However, as I left her, a manager from one of the stores in the complex came out and was screaming at her. He told her she couldn't be loitering around and if she did not leave, he was going to call the police and have her arrested. I tried to understand his point of view, but what I did NOT understand or condone was the rude and disrespectful manner he was talking to this woman. She was naturally embarrassed, as anyone would be if yelled at in this manner, and I left that scene feeling disgusted. Disgusted because of the heartless way human beings can sometimes treat one another. This whole episode bothered me on the way home, and I told Peter all about it. His one response was.... I did the right thing. Not sure, since a part of me felt like I should have stayed around to advocate for this woman.
Between this scene with the woman and feeling particularly down this week, I decided to try to walk. I walked 3.4 miles, however, I did not feel much better after the completion of that routine. So when all else fails, I rest. It is Thursday, however, in all reality I have felt this way all week. I suppose it is only getting worse as the week continues, and knowing that Sunday is Halloween only compounds the problems. Wherever I go I see Halloween decorations, cards, candy, and costumes. Halloween is about children, and in our case it only further illustrates the amazing loss in our lives.
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