Wednesday, June 29, 2011

Wednesday, June 29, 2011 -- Today marks the granting of our FIRST MATTIE MIRACLE!

Tonight's picture was taken in July of 2007, during our visit to Peter's parent's house in Boston. Peter's mother gave Mattie this large King Tut puzzle. Mattie assembled the puzzle and then decided to lie down next to it to see who was taller! The whole notion of this was hysterical, and I am so happy I snapped a picture of him and his antics.

Quote of the day: Grief can awaken us to new values and new and deeper appreciations. Grief can cause us to reprioritize things in our lives, to recognize what's really important and put it first. Grief can heighten our gratitude as we cease taking the gifts life bestows on us for granted. Grief can give us the wisdom of being with death. Grief can make death the companion on our left who guides us and gives us advice. None of this growth makes the loss good and worthwhile, but it is the good that comes out of the bad.  ~ Roger Bertschausen

Today, Peter and I granted our first Mattie Miracle. We officially donated $25,000 to the Georgetown University Hospital's Childlife Program. We worked hard planning this year's Walk, and after months of being focused and determined, we were able to have this special gathering today in the Childlife playroom at the Hospital. This playroom was our saving grace on some very challenging days. When Mattie first arrived at the Hospital in July of 2008, there was NO playroom. The playroom opened in the Fall of 2008, Mattie was thrilled and so was I. We needed this diversion for mental health purposes! I recall the ribbon cutting ceremony to mark the unveiling of the playroom, and Linda (Mattie's childlife specialist) allowed Mattie to cut the ribbon that day. It seems as if this happened only yesterday. It is hard to believe that almost three years later, I am standing here today, in the room that Mattie and I spent hours in, delivering funds to Linda, surrounded by doctors, nurses, and hospital administrators.

Peter said a few words, as did I, to a crowd of about 30-40 people. We gathered in the childlife playroom, a focal point in Mattie's life. I told attendees that we were here to celebrate this first large Mattie Miracle, but to also celebrate Linda and the fine and vital childlife program she runs at the Hospital. I equated pediatric cancer and its treatment to a tornado. I explained that when a tornado hits, you know it leaves behind devastation. Homes, schools, cars, and belongings are torn to pieces and scattered everywhere. I said that pediatric cancer and its treatment also provides the same sort of devastation, it may not be as visually catastrophic, it may be more subtle, but yet very real for a child and his/her family. I gave examples of the devastation caused by treatment and cancer: a child not wanting to leave his/her room, a child feeling isolated, a child feeling ill or incapacitated, not feeling accepted by friends, being different, afraid of dying, losing one's hair, feeling ugly, not fitting in, and the list goes on. The beauty of childlife is they are the professionals who help children and families cope with this devastation. They work with families in the trenches on a daily basis to help normalize a very abnormal situation. Medicine and treatments are important, but the psychological, social, and emotional care of children with cancer are equally as important. We feel honored to help fund such a vital program that will help hundreds of children and their families throughout the year!

  

Peter and I are pictured with Linda! I love the OVERSIZED check that Georgetown made for us to mark this occasion. I felt like a lottery winner of sorts. As I told the attendees today, I have to imagine that Mattie is proud of this achievement because Linda and the Childlife program meant a great deal to him.

Our group of wonderful supporters!!! From left to right are: Tanja (our friend, Katharina's mom), Brandon (Mattie's Big Buddy), Anita (one of Mattie's HEM/ONC nurses), Ann (our friend and Mattie Miracle Board Member), Linda, Peter, Vicki, Tricia (one of Mattie's favorite HEM/ONC nurses), Debbi (our Sedation Nurse Angel), and Toni (our friend and Brandon's mom)

There is something very cute about this photo, which is why I am posting it! I was surrounded by three women who became integral to my life in the Hospital. Tricia and Linda helped me through some indescribable times. In fact, Tricia is the nurse who confronted me and told me Mattie was dying. No one else had the courage to tell me. While battling cancer, Tricia would bring me tea every morning and she would talk to me and reconnect me to the outside world. Tricia, like Linda, will ALWAYS hold a special place in my heart. As for Toni, Brandon's mom, she is a loving and caring friend and supporter. Though she and Brandon do not live around the corner, they made the trek to the Hospital today to participate and support us. Toni and I spent many days together in the Hospital, worried about our sons. Toni and I have a great deal in common and our view points and outlooks tend to be the same. Which is why we understood each other very well throughout treatment. I did not have many cancer moms I related to, but Toni and I always got each other.

I would like to end tonight's posting with a beautiful message my mom sent me last night. My mom, as I am sure you gathered, has a way with words, and she captured the essence of the Foundation Walk in such a meaningful manner. Even the title captures the imagination and I appreciate her writings, because she absorbs things and has a perspective that I sometimes oversee. 

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Lasting Impressions by Virginia R. Sardi

The 2011 Walkathon was a beautiful celebration of life and further evidence that Mattie’s story is a compelling tale of a life cut short by bone cancer when he was only seven.  It was the second year that Mattie was not with us. Even though the odds were always against him, it was only human to hope as I did at the first Walkathon that he would survive a few more years and become one of the Faces of Hope that so brightened my day this year. It was not to be! Reconciled to the reality that life goes on despite the inevitability of loss and the irreversibility of what has been taken from it, it seemed like a natural evolution to confront the future without him by looking through a new prism of sensitivity in search of Mattie’s presence in our surroundings, finding him in every breathe we take, every rainbow we see, every butterfly that serendipitously crosses our path and every “penny from heaven” that we find on the ground. It is a very human attempt at capturing Mattie’s spiritual essence in a purely symbolic way, to find a spark of the earthly presence that we knew and loved so dearly before he died. Our connection to him was a bond so overflowing with love that much like clogged arteries that can establish continuity of life by diverting the flow of blood to newly formed pathways, unseen pathways open to establish a new spiritual bond between us. The supportive community of people that surrounded him through his illness hoping that a miracle would save Mattie’s life has become a powerful force for his cause after he died. A force consisting of volunteers, the faculty and staff of SSSAS and contributors from the community have made the Walkathons a reality without which the dream of Mattie’s parents, Vicki and Peter to bring awareness for Mattie’s disease to the public might never have achieved the successful track record it has earned in three years. On an impressive scale they are an army of caring warriors whose devotion to improving the chances of survival of children with pediatric cancer has been critical to the establishment of MMCF which is the key vehicle Vicki and Peter have chosen to keep the memory of Mattie’s fight against cancer alive. With the continued support of these loyal warriors, his Odyssey through life will never be forgotten! I thank them for their generosity of time, effort and spirit and remain deeply touched by their efforts to make the MMCF Walkathon a successful annual tradition.