Tonight's picture was taken in our living room during the week of Halloween in 2008. Mattie chose to be a mummy that year, and it was an excellent choice, because his right arm was bandaged up from his limb salvaging surgery. However, with this costume you couldn't tell that Mattie had an operation nor could you tell that he had NO hair. Mattie loved this costume for just these reasons! The costume made him feel normal, because he was able to dress up like the other kids. Mattie was the first one to pick out his costume at the Lombardi Clinic. Each year, a wonderful local organization, donates hundreds of Halloween costumes to the clinic. Mattie originally went into the clinic thinking he wouldn't find a costume that would work for him! To his surprise, he found this mummy costume. It was the ONLY one like it, and it fit him perfectly. It brought a smile to his face. In this particular picture, my mom took a picture of Mattie and I (I was a black cat!) dressed up to go to the Hospital Halloween party. Halloween is a big deal at the Hospital, with parties both in the clinic and the inpatient unit. The children are also escorted (with parents, a childlife representative, as well as a nurse) around the Hospital to collect candy from all the offices! Mattie walked around for over an hour that day, and seemed fine during the walk, however, once the walk was over, he was very depressed and needed time away from the crowds.
Quote of the day: The world will little note, nor long remember, what we say here, but it can never forget what they did here. It is for us the living, rather, to be dedicated here to the unfinished work which they who fought here have thus far so nobly advanced. It is rather for us to be here dedicated to the great task remaining before us - that from these honored dead we take increased devotion to that cause for which they gave the last full measure of devotion - that we here highly resolve that these dead shall not have died in vain. ~ Abraham Lincoln, The Gettysburg Address
Lincoln's address is VERY moving. However, what if I did not tell you that Lincoln spoke these words, or that these words were part of the Gettysburg Address, then what? What would they mean to you?! Well frankly when I read these words, what struck me was that this speech could very well apply to Mattie and all the children who have lost their lives to cancer. Those of us who remain behind after such a tragedy are left with an "increased devotion" to the cause. The cause being to eradicate pediatric cancer, and to make sure that our "dead shall not have died in vain." Seems to me that Lincoln's words were poignant not only in 1863, when he delivered this speech at the dedication of the Soldiers' National Cemetery in Gettysburg, Pennsylvania, four and a half months after the Union armies defeated those of the Confederacy at the decisive Battle of Gettysburg, but even TODAY!
Being a cancer survivor, which is a title I think Peter and I have earned, evokes one of two reactions in a person. The first reaction could be that of needing distance from the disease, distance from hearing about the disease, and seeing others contending with cancer. The other reaction, would be the exact opposite. Wanting to advocate, help, and participate to make a difference. I am not implying that one reaction is better than the other, I am just saying I have noticed within the survivorship community these two stark contrasts exist. Both of which are very understandable to me!
My initial plan this morning was to get up early and walk. However, when I woke up, it was dark and pouring. So I jumped back into bed, and stayed there for a while. On these kind of days, I do struggle for a reason to get out of bed. I am involved in a couple of projects now that require research before I can procced. One of the projects you already know about, it is the project for one of the kindergarten classes at Mattie's school. I spent a portion of the afternoon at the library looking up the lives of Matisse and Picasso. I found some wonderful books geared toward children, and then also checked out some biographies on these artists so I can get more indepth information on their lives, artistic styles, and creations. I haven't spent much time in a library recently, so today's visit was special. It reminded me of all the days I have spent in the library over the years as I was trying to obtain my degrees. A library is like a second home to me, and even when Mattie joined the St. Stephen's and St. Agnes School, I became a library volunteer. I worked in the library every other week, for 4 to 6 hours at a time. Today, I chatted with most of the librarians, I had them help me search and find materials, and by the end, the stack I checked out was half my size.
When I got home, the test was how to carry all the books, dry cleaning, and other items upstairs to our home in ONE trip! Fortunately, the answer was to use Mattie's stroller. Mattie's stroller remains in my trunk at all times. In fact, many of Mattie's things are in my trunk. I naturally know Mattie isn't coming back to use them, but having his things with me are symbolic of his place in my life. Today I needed an extra set of hands to carry everything, and in some way, Mattie (through his stroller) was there to help me.
I was unable to do my walking routine today, and that definitely affected my mood. As the evening wore on, I got a phone call from Ann's cousin in Boston, JP. Many of you may recall that JP came to visit Ann in August, and during that time, I had the chance to spend time with him. The first thing that JP said to me on the phone was... "I miss Mattie!" JP met Mattie only once, in July of 2009, two months before he died. Yet JP understands the pain of losing someone very special, and I admire his courage to be able to verbalize his feelings and not worry how I will react to his comments. I couldn't have said it better....... WE miss Mattie!
I would like to end tonight's posting with a message I received last night from Mattie's oncologist and our friend, Kristen, Kristen wrote, "I hope you are doing well. I think of you often...which you may or may not know. Last year, about this time, I planted bulbs which came up several weeks later. They didn't come up this summer but I thought they would sit around until next summer. Well, would you believe that out in our flowerbed the same bulbs are coming up again this year?? There is a single tiny purple flower which has also come up. It's really the strangest thing. And of course, it reminds me of Mattie...because he would find it so magical. Thinking of you both this Tuesday and every day."
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