Thursday, June 30, 2011

Thursday, June 30, 2011

Tonight's picture was taken in July of 2007. As you can see, Mattie was busy in our living room building with duplos (a form of Legos). Mattie loved building all sorts of structures, and if you look carefully you will see that he had a couple of toy cars, Lego people, and rubberized animals that he added to the structure to make it interesting!


Quote of the day: We have to believe that even the briefest of human connections can heal. Otherwise, life is unbearable. ~ Agate Nesaule

Peter and I found that we were both emotionally exhausted from yesterday's hospital visit and from the donation gathering. In fact, while having dinner last night, Peter dialogued about how challenging it is to go back to the hospital. Actually what he stated was brilliant because I would have to say I relate to his feelings wholeheartedly. I just never put it into words. Basically he was saying that when he knows he has to go to the hospital, he doesn't focus on the process or dwell on it. However, while he is actually in the hospital's physical space and interacting with the people we know, then it hits him that something doesn't feel right internally. In fact, he could see visual signs of anxiety in himself while entering the pediatric unit yesterday. To some extent Peter and I will always be traumatized, it is just how debilitating will each episode be. Peter sometimes can verbalize these feelings better than I can, and I find that with me, I have to detach from the reality of the situation, in order to be able to handle it. Otherwise, I wouldn't be able to enter the pediatric units and even gather in the childilfe playroom yesterday. Nonetheless, my feelings are always on a delayed response, and my post-reactions always lean toward sadness, depression, and anger.

We found out today that the $25,000 we gave to Georgetown University Hospital yesterday has been placed in a restricted fund. We knew about the restricted fund, but I assumed the title of the fund would be "childlife program fund." I learned to my surprise that the Childlife Fund at Georgetown is now called: The Mattie Miracle Child Life Program Support Fund! Mattie would be absolutely thrilled to see his name attached to a program he dearly loved and that made his time in the hospital memorable. I am deeply moved by this fund's title and in a way this is the start of Mattie's legacy. I attached a link below to the press release sent out by the Hospital.

News Room - Donation Funds New Child Life Position to Help ...Washington DC, June 29, 2011) —  Mattie Miracle Cancer Foundation today donated $25000 to Georgetown University Hospital to help fund an additional child ...
http://www.georgetownuniversityhospital.org/body.cfm?id=15&UserAction=PressDetails&action=detail&ref=235


This morning I had the opportunity to meet with a social worker who works at The George Washington University. She is working on obtaining a grant from the National Children's Medical Center, Washington, DC to fund a transitions program. This program would help young adults who survived childhood cancer transition to an adult treatment facility. This may sound easy, but in reality, it is very challenging to move away from your pediatric oncologist, a person who you have grown to know, love, and TRUST over the years. In addition, it is equally hard for parents of grown children who survived cancer to relinquish the control and oversight of their child's medical care. This is very understandable for SO many reasons. The reason I met with the social worker is that she is looking for organizations in the community to partner with to help with the study's design and promotion. We had a good dialogue and I love the holistic nature of this survivorship program that is being developed. A program that would give adult childhood cancer survivors access to nutritional counseling, exercise fitness support, medical care, psychological support, and career counseling. Though Mattie Miracle is currently focusing on helping children and their families in the midst of cancer treatment, our overall goal is to assist individuals psychosocially who have been impacted by childhood cancer. So if the grant is won, you will be hearing more about this project.

It is ironic. I attended yesterday's donation gathering, and yet I missed some very important dynamics. Most likely because it is overwhelming and all encompassing for me to try to keep it together while at the hospital. In particular I missed the reactions of two children patients and their family members who were in attendance. Fortunately, my friend Tanja captured the feelings in the room and took the time to write to me last night. I am so happy she did this because what she observed and absorbed are exactly what we hope the Mattie Miracle Cancer Foundation will be able to accomplish. Raising funds was a huge accomplishment for us, but changing hearts and minds is profound.

Tanja wrote, "Thank you so much for inviting me to today's event! I am so glad and honored to be there. I could sense Mattie's spirit in the room as well. While he could not be there in person, he touched and inspired all of the people in the room. There were many people present who have known each other before but by the end of today's event many connected on a different level. Their original purpose of being there to be supportive turned into a desire to carry on the torch that Mattie, you and Peter have lit. Its path and extent is not known yet. I did sense a tremendous change in feelings and attitudes and commitments during this event. Initially, many people were there because they cared and wanted to show their support. After Tim, Peter, and you addressed the people and explained your labor, compassion, and commitment to your cause the entire atmosphere and static in the room changed. I could sense the shift in people's feelings and emotions: from being there to being touched by Mattie's spirit who works and lives through you and Peter! People left the event, emotional and being touched to the point of carrying Mattie's spirit and legacy forward to make a tremendous difference in the way childhood cancer patients and there families will be treated and supported! The fact that I am even able to verbalize my feelings is only a tribute to your Son's impact.

Here are my observations about the two girls. One was very little and wearing a mask over her mouth and nose. At first she would not even come into the childlife playroom as we were setting up but a volunteer came and got what she wanted. As the event progressed, she stayed outside the room but continued to be fascinated by the event. She soon was able to come in the room with much more confidence and a look of hope and inspiration on her face. Every time she came in to either snag a cupcake, piece of cake or a game, her eyes were trying to find you. Her entire body language had changed! She was more relaxed and also seemed more hopeful.

The second girl came in the room at the beginning of the event. She was hooked up to many IVs. She sat on a chair and listened to Peter's and your words. So did her mother. At first both were very tense; you truly described their situation. But the more you talked about the support you and Mattie received, the more relaxed and hopeful their expressions and body language became.  As I left, I saw this girl asleep on the bench/seats outside the playroom and even the mother seemed to have relaxed enough to rest her head and close her eyes. Both of these families now truly know how much support and kindness they have available to them in Linda! The fact that you support this cause seemed to have given them hope and some inner peace at least knowing they are not alone in this."