Before my friend Charlie became a professional counselor, she was a Lt. Colonel in the Air Force and also was a radiology technician who received training at Sloan. Charlie wrote to me today and said, "I knew Sloan was a problem back in the 70s and I am sorry to hear that things have not improved much if at all. I think what you did with the patient advocate will do far more for the process of treatment at Sloan than having Mattie's blood drawn every hour. It sounds like you made the right decision on both counts. I know the situation is very unpleasant to say the least but hopefully it will be worth it in the end - to that I offer this quote and hope it is true for Mattie."
Quote of the day: "Every adversity, every failure, every heartache carries with it the seed of an equal or greater benefit." ~ Napoleon Hill
We are all exhausted and we woke up late this morning. Once we were up, I made everyone a nice breakfast and Michael (one of the staff members at the hotel) came up to deliver two packages to us. One package was from Optioncare, our home medical supplier. We needed more IV hydration bags for Mattie, and Optioncare sent them to us today. Optioncare has been fantastic and I love working with their pharmacists. They can't do enough to help Mattie. The second package was a complete surprise to Mattie. Mattie received a package from Linda. Of course Linda put in all of Mattie's favorites such as Legos, model magic, puzzles, a model sports car, and a magic wand (one of Linda and Mattie's signature toys). Thank you Linda, today we felt you were with us in spirit. Linda is an amazing individual that truly understands Mattie. Mattie's face lit up while holding Linda's package and after seeing the gifts. I caught the excitement on camera!
We had trouble getting it together today, and we did not leave the hotel until after noon. We bought tickets to ride on the NY Water Taxi today. The taxi gives you an hour water tour of the city, where you can see the Statue of Liberty, and all the wonderful bridges. We learned today that BMW is not just a name brand of a car. It is also an acronym for the three bridges connecting Manhattan to Brooklyn: Brooklyn bridge, Manhattan bridge, and the Williamsburg bridge. Mattie really wanted to go on a boat ride on his trip to NY, so despite every other boat company being closed on a Tuesday, I was able to locate one that was open and operational during the winter on a Tuesday. The company assured me they could accommodate a wheelchair, what they did not mention was the ramp to get onto the boat was under construction. So one of us had to carry Mattie down a flight of stairs and the other had to take the wheelchair. Fortunately one of the men working with the boat line helped me out. There are many lovely people in NYC, they just don't happen to work at Sloan Kettering.
On our trip, we passed some glorious and historical sites, such as Ellis Island, the site where the Twin Towers once stood, the Statue of Liberty, and one of Peter's favorite all time sites, The Brooklyn Bridge. Below you will see some of the photos we captured on our tour today.
This is a picture of the water taxi. It literally looks like a yellow NYC taxi, doesn't it?!
All three of us aboard the NY Water Taxi!
Ellis Island (which I hope to visit someday, since three of my grandparents entered America through this Island)
You can see a greenish spire on the tallest building in this photo. To the right of this building is where the Twin Towers stood. It was amazing to hear about all the rebuilding of the site and other things in the works to be unveiled on the 10th anniversary of 9/11 in 2011.
Peter took this photo, and I love how he caught the American flag flowing in the wind and the Empire State Building in the background.
Lady Liberty! I love how her flame is moving in the wind and how she has her right foot moving forward. Very symbolic of progress and change, and hope for the future. I felt like I could relate to her cause more than ever now that Mattie is sick.
Peter snapped several wonderful pictures of the Brooklyn bridge today. This bridge has quite a history and several people lost their lives in building it. There is something magical about this bridge and I personally love the American flag on top of it. What a patriotic sight!
After the boat tour, we stopped at Seaport Village and Mattie wanted to buy some things and he stopped to even eat a Nathan's hot dog. Can't get more NY than that! Then we headed back for him to unwind before heading to the Lion King this evening. Karen came over after work and joined us for dinner and she brought Peter another great bottle of wine and Mattie and I shakes. The shakes were sinful. Karen has been a real sport and has listened to us vent for two days now. We debated back and forth whether to take the wheelchair to the theatre tonight, but Mattie is heavy and also he feels very insecure when we carry him. He rather be in the wheelchair. So we attempted to leave without the wheelchair and Mattie pitched a fit. So we caught a taxi wheelchair and all and headed to the theatre. The theatre is located right near Times Square. I guess I haven't seen Times Square in a long time, because I was thoroughly overwhelmed with lights and advertisements. It was sensory overload, but fascinating at the same time. Here is a picture of Mattie, Karen, and I in front of some of the signs!
Before we headed into the theatre, Peter took a picture of Karen, myself, and Mattie in front of the Lion King sign.The theatre staff couldn't have been nicer to us. The will call window was a breeze to deal with, and someone even escorted us to our chairs and helped us with Mattie's wheelchair. I can't thank Jenny and Jessica Moore enough for making this possible tonight. We also thank Mr. Padden at Disney. I guess Disney does make one's wishes come true. The show was magical and vibrant. I am not sure if I have ever seen a Broadway show like this. The scenery, costumes, lighting, and staging are down right incredible. I felt like I was transported to another culture and time. Mattie was completely glued and at times dancing in his seat. Mattie sat between Peter and Emily (his babysitter who moved back to New York). Emily was a graduate student at GW, and Mattie and her have a special rapport. I know Mattie enjoyed the experience sitting next to Emily and thank you Emily for the wonderful Lion King items you bought Mattie. They are adorable and will remind us of this special evening. Mattie was very curious about how people in the play could be flying and how things seemed to appear and disappear through the floor of the stage. All great questions, because the way this was staged was so creative. I can't believe that a live show could be better than an animated movie, but I think it is safe to say in my book, that I liked the show better than the movie. I will not forget the colors, songs, and the motion of these animals any time soon. The evening only got better. Jessica Moore arranged for us to get a backstage tour. We were personally escorted by the stage manager, Narda tonight. Narda explained her role to us, and in all reality her role is crucial. Seems to me she cues just about everything happening upon the stage. In addition, to Narda, we also had the pleasure of meeting and taking pictures with one of the stars of the Lion King. The actress (Kissy Simmons) who played the character Nala (who is Simba's girlfriend). Kissy was delightful, down to earth, and very gracious with her time. She answered our questions, and took pictures with us on stage of the Minskoff Theatre.
After the tour was over, Narda graciously took a picture of our whole group together on stage.
From left to right, Adam (Emily's boyfriend), Peter, Karen, Vicki, Emily, and Mattie
My mom shared an e-mail with me yesterday entitled, "How much do we miss?" I liked it so much I have posted it tonight. In essence, we can learn a lot from the children in our lives. Sometimes they see much more than we do, and we are too wrapped up in appointments, time schedules, and the rigors of life to notice the beauty around us.
How much do we miss?
A man sat at a metro station in Washington DC and started to play the violin; it was a cold January morning. He played six Bach pieces for about 45 minutes. During that time, since it was rush hour, it was calculated that thousands of people went through the station, most of them on their way to work.
Three minutes went by and a middle aged man noticed there was a musician playing. He slowed his pace and stopped for a few seconds and then hurried up to meet his schedule.
A minute later, the violinist received his first dollar tip: a woman threw the money in the till and without stopping continued to walk.
A minute later, the violinist received his first dollar tip: a woman threw the money in the till and without stopping continued to walk.
A few minutes later, someone leaned against the wall to listen to him, but the man looked at his watch and started to walk again. Clearly he was late for work.
The one who paid the most attention was a 3 year old boy. His mother tagged him along, hurried but the kid stopped to look at the violinist. Finally the mother pushed hard and the child continued to walk turning his head all the time. This action was repeated by several other children. All the parents, without exception, forced them to move on.
In the 45 minutes the musician played, only 6 people stopped and stayed for a while. About 20 gave him money but continued to walk their normal pace. He collected $32. When he finished playing and silence took over, no one noticed it. No one applauded, nor was there any recognition.
No one knew this but the violinist was Joshua Bell, one of the best musicians in the world. He played one of the most intricate pieces ever written with a violin worth 3.5 million dollars.
Two days before his playing in the subway, Joshua Bell sold out at a theater in Boston and the seats averaged $100.00 each.
Two days before his playing in the subway, Joshua Bell sold out at a theater in Boston and the seats averaged $100.00 each.
This is a real story. Joshua Bell playing incognito in the metro station was organized by the Washington Post as part of a social experiment about perception, taste and priorities of people. The outlines were: in a commonplace environment at an inappropriate hour: Do we perceive beauty? Do we stop to appreciate it? Do we recognize the talent in an unexpected context?
One of the possible conclusions from this experience could be:
If we do not have a moment to stop and listen to one of the best musicians in the world playing some of the best music ever written, how many other things are we missing?
If we do not have a moment to stop and listen to one of the best musicians in the world playing some of the best music ever written, how many other things are we missing?
I end tonight with some musical highlights from the Lion King. Thank you again Jenny, Jessica, and Mr. Padden for making this show possible for all of us tonight. Mattie loved it, it made him happy, and I left the theatre understanding why people love New York. Having access to such fine theatre up and down several city blocks is truly remarkable!
No comments:
Post a Comment