Tuesday, January 10, 2012

Tuesday, January 10, 2012 -- Mattie died 122 weeks ago today.

Tonight's picture was taken in April of 2009. Mattie was in the Lombardi Clinic, and if you knew Mattie, then you know that when he was in clinic he was going to find Jenny and Jessie, his art therapists. Jenny and Jessie are very talented professionals who unfortunately no longer work at Georgetown. For us, they made the clinic special and they knew how to engage Mattie both artistically, mentally, and socially. A rare gift! This cutie sitting next to Mattie is Maya. Mattie and Maya are the same age and Maya was the ONLY friend Mattie's age that he made at the hospital. I can recall the day they met in fact. Mattie, Maya, and a few other kids were sitting around the art table creating independently. Maya started talking about how she hated to get pricked with a needle. She expressed herself very well and shared her feelings. To my surprise, Mattie out of no where piped up and told her that he could relate to her and her feelings. That was it, that conversation cemented their friendship. Maya is very bright, humorous, creative, and a live wire. She was an excellent match for Mattie. In front of them, you can see a painting of a rainbow they painted together. This painting still exists and it is a ceiling tile within the Lombardi Clinic. I am sure many people pass under this rainbow each day, but to me this rainbow is special. It signifies the time when Mattie was alive and it captures the boldness and beauty of a special friendship.  

Quote of the day: A bit of fragrance always clings to the hand that gives you roses. ~ Chinese Proverb

My friend Charlie sent me this quote today, and I simply love it. I love it because the visualization it conjures up is beautiful. In essence when we give someone a gift, not just roses, a part of that gift remains on our hands. Our hands are responsible for sharing and spreading happiness and these emotions do stay with us. They get absorbed in our skin, not unlike lotion. I know I feel this way when I give someone I care about a gift, but this Chinese proverb captures that feeling in a very meaningful and visually pleasing manner.

Today was my first day back to zumba since I returned home from our trip. It is always hard to get motivated to start exercising again, but as always the class doesn't disappoint me. By the time the hour was up, I felt better physically and mentally.

As today is a Tuesday which marks the 122 week of Mattie's death, heading back to Georgetown Hospital was not an easy endeavor. But I attended the parent advisory board meeting tonight. Mind you I was just on campus yesterday too! To some extent I have to compartmentalize my emotions when I enter the hospital, otherwise I couldn't muster the energy to make it to the pediatric unit. The meetings are held in the childlife playroom, a playroom that was VERY significant to Mattie. To many of the parents sitting in the meeting, they never sat in this playroom. When their children were being treated at the hospital the playroom hadn't been built yet. But for me each corner of the playroom holds memories.

One of the items we discussed tonight was the annual medical grand rounds in which parents present to doctors and nurses about family centered care and their experiences at the hospital. Some of my faithful readers may recall that I testified at the medical grand rounds in May of 2011. I have been asked to speak again this year on April 20. However, I couldn't hold my tongue and asked what we were planning on doing to get physicians to actually attend this event. The chief of the PICU sits on our advisory board and I said it was "appalling" that parents should prepare and come to this event and then doctors do not show up. Certainly I am smart enough to know that one can't demand an attending physician to show up anywhere, but certainly medical school students can be mandated to do anything. To me medical students need to hear from parents directly and in many ways we are their paying customers and our feedback should be important to them. It was discussed that nurses were in attendance in 2011 and that nurses would be invited again this year. With that, again, I stopped the conversation and said I am not surprised the nurses attend, however, they are not the ones who need to be exposed to psychosocial content and the nature of parents' concerns, it is doctors. Parents all around me at the meeting were nodding their heads in agreement, and it is hard to challenge what I am saying, especially if you lived within a hospital setting. I lived in a hospital for 14 months and I can count on one hand the medical doctors who truly understood, embraced, and practiced family centered care. So it is my hope that the medical profession will not only talk the talk, but walk the walk. The walk has to start in MED SCHOOL! Whether physicians want to accept it or not, patients are taking a much more active role in their health care and the care of their family, and therefore instead of this being viewed as a hindrance or obstacle, it should be viewed as an added benefit.

After the meeting, I had the wonderful opportunity to talk to one of the hospital administrators who has become a friend. He let me know on stressful and challenging days, he stops and reads Mattie's blog. That the blog gives him perspective. I was deeply touched by his feelings and thoughts. On the drive home I looked up into the sky and there was a glowing and very full Mattie Moon guiding me home.

As promised, I would like to end tonight's posting with two of the commentaries I have received from the Fall undergraduate business class. As I continue to read these reflection papers, I realize introducing these students to childhood cancer was a profound experience for them.

From a female undergraduate, "There were many factors at play to consider when evaluating how the project has affected me as a student of creativity, as a group member, and as a human being. This project has been unlike any I have done in the business school or at Georgetown in general. It is a question of being human at our very core, suffering and accompanying each other as best we can. Vicki and Peter are incredible people and I think that there is no other foundation that we could have worked for that would have provided such an experience of mutual gratitude. I felt like they really opened their hearts towards us and as much as we helped their organization, they helped us back. Vicki was constantly available through email, and both of them actually took the time to come to our event at the hospital."

From a male undergraduate, "The project itself is very humbling. I'm known for being very vocal during everyday affairs with things that bother or annoy me. However, walking over to the hospital and seeing what the children go through is a very humbling experience. When you realize how sick some of them are and what they are going through, suddenly the problems in your life don't seem so bad. I won't pretend that it isn't human nature to find something to complain about during the day, but at least for those moments, you realize just how much easier your life is than any of the children's lives at the hospital."