Monday, September 7, 2015

Monday, September 7, 2015

Tonight's picture was taken on September 1, 2009. Seven days before Mattie died. Mattie was absolutely miserable and in terrible pain. As you can see he had a pain pump (black box) attached to him. While we were in clinic that day, Mattie's art therapist, Jenny, tried her best to engage Mattie and keep him occupied. She gave him this remote controlled dinosaur, which he had just about enough energy to operate.


Quote of the day: The death of a baby is like a stone cast into the stillness of a quiet pool; the concentric ripples of despair sweep out in all directions, affecting many, many people. ~ John DeFrain

Since 2012, our friend Tim honors the memory of Mattie by wearing a different orange tie each day during the week of Mattie's anniversary. Tomorrow Mattie will be gone from our lives for six years. Now four years after the tradition started, Tim's orange tie week is still going strong. Tim sent me this photo of him in his orange tie for today! Naturally orange is the official color of Mattie Miracle, but we selected this color because it was one of Mattie's favorite colors. 

Peter and I appreciate Tim's kindness and thoughtfulness. Keep in mind that Tim never met Mattie. He has only heard about Mattie from us, the blog, and all of Mattie's caregivers at Georgetown University Hospital. We met Tim years ago, as he was our philanthropy contact at Georgetown Hospital. Tim took it upon himself to get to know Mattie's story and learn about our experiences. There are many of our blog followers who have fallen in love with Mattie through the years, without ever meeting him. Tim is just such a friend. 


As we are on the eve of Mattie's 6th anniversary, I thought it would be meaningful to post an excerpt from the blog on September 7, 2009 --- the day before Mattie died

-----------------------------------------------------------------------
Mattie had a very difficult start to the day. His blood pressure has been dropping and is dangerously low, and he had a coughing fit, which left him gagging and unable to catch his breath. He was deathly scared, and when Dr. Shad and Kathleen (Mattie's outstanding HEM/ONC nurse) saw him, they mobilized into action. In reality what happened next moved so fast, it was almost a blur. Mattie was in minutes being pumped up with pain medications and Versed (for anxiety). Now that I can reflect on the morning, I am so thankful we are in the hospital. Because Mattie couldn't possibly be cared for humanely at home based on the symptoms he is presenting. It is ironic that Mattie seemed to know this, and had a better feeling for his condition and his decline than Peter and I. Once Mattie received all this medication, he asked if I could snuggle with him, which I happily did. However, Mattie is being kept in a comfortable state, so therefore he really isn't talking and spends a lot of time sleeping. The Mattie we knew is NO longer!

Peter and I spent a great deal of time today monitoring Mattie and also talking with him. In fact, when everyone was visiting, we had solemn moments, but also moments of laughter. Laughter because Mattie was a very humorous fellow! Kathleen told me that the nurses love Mattie, but they also love us. That Mattie has left a legacy, and his love will always live on within us. Mattie did not go to school this past year, but in a way he went through the hardest school of all. The school of cancer, which shows you the most vulnerable and raw sides of life. In fact, it has left me so raw, that I emotionally am not the same person anymore.

Mattie's nurses all came in tonight at their shift change to kiss and say good-bye to Mattie! It was very touching. Kathleen told me that even though Mattie isn't awake, he can hear us, and that he worries about us and is holding on because he knows we do not know how to say good-bye to him. So tonight, Peter and I mustered the energy to talk with Mattie together. We told him we loved him, were proud of him, that he did a great job fighting the cancer, but now he is in control and can decide when he has had enough and wants to rest. That we will be okay, and that we will always, always love him. We told him that we couldn't have asked for a better son, and that he was going to a place where he would be at peace, able to run and play, and meet up with family members and friends who love him but whom he has never met. My sign off tonight, as it always is to Mattie was, "Una Moon loves Mooshi Moo." Mattie coined the nickname, Una Moon for me, and he is my Mooshi Moo.
--------------------------------------------------------------------------------------------

For the past several months, our neighborhood has been inundated with graffiti. Some of it I can see from our home and others of which we can drive by it and see it. 

This weekend, I couldn't take it ONE MORE MINUTE. I am not one of those people who finds graffiti beautiful or artistic. If you want to create beauty, go get a canvas or a piece of paper. 

So Peter took photos of the areas in question and we submitted a formal request to DC to come clean these public spaces. The first zone is shown above. You may not be able to see it, but the graffiti is all over the walls behind the road signs and fence. You may not think one can notice this, but the wall is adjacent to a park. Which is supposed to be a beautiful and restful space. The second horrible sight is right near the State Department. Graffiti has taken over this wall, and the building above it is the State Department. I am not sure why the State Department has allowed this to continue without addressing it, but I have had it. It disgusts me and it has to go!

We went on a four mile walk around DC today. That was really a labor given the intense heat and sun! We meandered through the FDR memorial. Which is one of the nicest and well laid on memorials in the city. 

The FDR Memorial Commission selected landscape architect Lawrence Halprin to design the memorial in 1974.  The result, with its shade trees, waterfalls, and quiet alcoves, feels more like a secluded garden than a traditional memorial. Walls of red South Dakota granite define the memorial’s outdoor rooms and the passageways connecting them. Waterfalls, quiet pools of water, and Roosevelt’s own words, beautifully incised into the granite walls by master carver John Benson, create a mood of quiet reflection.

The national memorial dedicated to Franklin Delano Roosevelt, the 32nd president of the United States, lies about half way between the Lincoln Memorial and the Thomas Jefferson Memorial in Washington, DC.  Its four open-air rooms represent each of the four terms of office to which he was elected.  A meandering pathway leads past waterfalls, bronze sculptures, and FDR’s own powerful words carved on the granite walls.  The memorial honors the memory of one of America’s great leaders and the optimism and courage that he shared with his fellow citizens through the ordeals of the Great Depression and World War II.  A statue of Roosevelt sitting in a wheelchair greets visitors and reminds them of the man who refused to let disability stop him.  

Halprin carefully designed the FDR Memorial to be accessible for people with all kinds of disabilities, but the original plans did not include this sculpture.  Spokespersons for the disabled protested, arguing that showing the truth of FDR’s paralysis, something that he himself rarely allowed, would increase awareness and set an inspiring example for others who struggled with disability. Congress agreed. 

The Breadline represents the despair of the Great Depression.  

This waterfall crashes over scattered boulders, suggesting the destruction and violence of World War II, which dominated Roosevelt’s third term in office. 

Neil Estern created the statues of Roosevelt and his beloved dog, Fala, calmly presiding over the chaos surrounding them.  Franklin D. Roosevelt’s hopes for the future are engraved on the wall next to his statue................... 

"We have faith that future generations will know that here, in the middle of the twentieth century, there came a time when men of good will found a way to unite, and produce, and fight to destroy the forces of ignorance, and intolerance, and slavery, and war."

Neil Estern’s statue of Eleanor Roosevelt honors her contributions as first lady and as one of the early delegates representing the United States at the newly formed United Nations. 

Even the steps at the FDR memorial tell a story. In fact they give the visitor a brief but historical overview of FDR's life and his four terms in office.