Tonight's picture was taken in October of 2007 on our deck. We took Mattie on that particular day to his school's Fall Festival. He had a wonderful time, running around with Charlotte, Campbell, Livi, Kazu, and Bethie. It is a day I won't forget any time soon, and I honestly can't believe that since Mattie's cancer diagnosis, he has missed three other Fall Festivals (2008, 2009, and 2010!). The Festivals continue, and yet for us the festivals have ended (literally and figuratively!). At the Festival, Mattie jumped on every moon bounce possible and as you can see in this picture, he had his face painted and fake tatoos rubbed onto both hands. The mascot or team name at Mattie's school is The Saints. So on his face, someone painted, "Go Saints," in Saints' colors! Mattie was very proud of his display of school spirit and wanted to take a picture of this accomplishment. What I captured from that day, and remains within my heart still, is the FEELING from attending the Festival. Mattie, Peter, and I left the festival feeling as if we were part of a community. Mattie clearly was comfortable at his school, he had friends, and felt secure enough to run around and be himself. In the midst of his fun, Peter and I had the chance to connect with the parents of Mattie's friends. Parents who are still our friends today. I guess I feel the need to comment on this because from experience connecting with those who are like minded and share similar values and priorities doesn't happen easily. Luckily for Mattie and I, this happened within the first month of his kindergarten year. Fortunately it did, because in our case, time was definitely NOT on our side.
Quote of the day: Some win eternal life only after many years, others, a single hour. ~The Talmud
I believe tonight's quote very much applies to Mattie and all the other children who lose their lives in such an untimely fashion. Some of us have to live a long life to qualify for eternal life, but Mattie and these other precious children who suffer at the hand of crippling diseases and accidents have nothing to prove. Within their short lives, they accomplished what was intended for them. Though I do not understand why children have to suffer so and die, I do understand that Mattie's life achieved something. In fact the power of that "something," I am still trying to comprehend. However, one thing is clear, my purpose is to help illustrate, explain, and describe to others what was gleamed from Mattie's short life.
My flight from Los Angeles to Washington, DC yesterday was uneventful. It wasn't a full flight, which was a blessing. For me it is hard enough to be on an airplane, but when I feel confined and packed into a row surrounded by people, it makes how I feel much worse. I noticed passengers are friendlier, happier, and more accomodating on a flight where they have more room, freedom, and access to bathrooms. Naturally if the passengers are more relaxed so are the flight attendants. As we were going through turbulence, I appeared to be the only one holding my breath and grasping to the arms of my seat. In the process of holding my breath, I concluded that someone like myself should be part of every pilot's and flight attendent's training. That may sound funny, but the airline industry is a service industry, and I think trying to understand the fears and concerns of those aboard your aircraft is important. It can only provide insights into how to provide more effective service. First thing I would make mandatory on every flight is that window shades must remain open during take off and landing! When I got on the plane yesterday, I sat in a row with people on either side of my aisle who shut their window shades. So I literally couldn't see out of the plane as the plane was taking off or landing. For someone like myself who is very sensitive to motion, not being able to see out was painful. In fact, in order to manage this take off, I practically was performing cognitive behavioral therapy on myself.
As the flight continued, I began reading the book I brought with me. I finally finished it on the flight and it was a good distraction that took my mind off of turbulence and other noises. However, the lady next to me had me jumping up a lot so she could use the restroom, which was fine, but when I sat back down in my seat, I realized I LOST my bookmark. That may not sound like a calamity to most of you, but for me, that is a major problem. Because my bookmark is the gold ribbon we received from the Candlelighter's Christmas Tree ceremony that occurred in December of 2009. Some of my readers may remember that Peter and I went to this ceremony. At the ceremony, there is a huge Christmas tree, and on the tree is a gold ribbon with a child's name on it who has or had cancer. On my gold ribbon it says, Matthew J. Brown, Washington, DC, Age 7! Since I flew in the evening, the plane cabin was dark. I tried to look for something shiny on the floor that resembled the ribbon, but I couldn't see anything. I tried the chair in front of me, in back of me, and so forth, NOTHING! Then I looked further back down the aisle, and sure enough, six rows back I could see it. I jumped up and grabbed the ribbon and secured it to my book. I am not sure what the ribbon signifies, but it is another tangible symbol of Mattie, and there was no way I was leaving it behind on the plane.
Yesterday, before I boarded the plane, I had a delightful email conversation with a young woman, Laura. Laura is Scottish and lives in England while she is studying to become a commerical airline pilot. I have never met Laura in person, though Peter has because Laura is the neice of Peter's boss, but I am very impressed with her depth and sensitivity through her emails. She reads the blog daily, and when she read about my apprehension on flying, she wrote to me. Laura explained the extensive training pilots undergo, their experience in the air, simulating different flying conditions and scenarios, and why there is turbulence and how pilots use it to the benefit of the flight. We chatted until the time I was boarding, and what I concluded was I would do much better flying if Laura was the pilot. I admired her commitment to study, her passion for flying, and her abililty to cope and manage the stresses of flying a passenger plane! So in a way, it is thanks to the blog, that I have the opportunity to meet extraordinary individuals like Laura.
When I got home last night, I was in no mood to unpack. In fact, in all my years of travel, I never came home before and refused to unpack. This was a first. Being on LA time, I couldn't get up this morning, but once I did, I had to contend with unpacking. Mattie and I shared closets, and therefore, to unpack, means spending time in Mattie's room. The clutter in his room and closets are overwhelming to me. I live in a catch 22. I do not want to part or touch Mattie's things, but on the other hand, I live in chaos. I joked with Peter and my parents today, about being able to get my clothes out of the closet, but getting them back in, was a feat. Which is why I probably did not want to take on this venture at 11:30pm yesterday!
Peter and I went out for an early dinner. I preferred to get out and be able to chat with Peter without worrying about cooking and cleaning. When we got to Mattie's favorite restaurant, we bumped into our friends Mary and Mike, and their two girls. Their girls (Abby and Emily) went to the same preschool as Mattie's. Just like Mattie, Abby and Emily were outside the restaurant, sitting by the pond, and feeding the beautiful Koi fish. It was a glorious weather day today, and after a week of rain and grey weather in Los Angeles, seeing the sun was special. Mary's daugher, Emily, has always had a special connection with Peter. In fact, when they would come to visit us in the hospital to drop things off for dinner, Emily always made a b-line to Peter. Today was no different!
I would like to end tonight's posting with a message from one of our favorite HEM/ONC nurses at Georgetown University Hospital. Tricia enterd our lives as Mattie's nurse, and is now our friend. She was an amazing nurse to Mattie and advocated for us on many occasions. However, in the process she also cared for Peter and I. She is a lady we hold near and dear to our hearts. Tricia wrote, "I was so happy to read the blog and hear of your trip out west to see your parents and thoroughly enjoyed all of the fabulous sightings that you shared on the blog. Yes, knowing Mattie, he was right there alongside you both to marvel at them all. I also couldn't agree with Mrs. Fischer more. The blog is a gift you give to all of us that has had invaluable lessons of life and LOVE that teach all of us what is truly important in life. I know that one of the greatest gifts that I have received in my life, next to my family, is your friendship and having had the priviledge to be Mattie's nurse. Mattie surely was very well versed in making every day count and living life to the fullest, he learned to do that through both of you, though his time here was way too short, his memory and mark on us all will be forever. I wanted to convey how I feel about you both and to thank you for continuing to share your daily life with us and for your thoughtful messages that provoke a re-awakening of many feelings inside of me and keep me aware of the need to re-evaluate myself and the meaning of my own life. Sending loving thoughts your way."
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