Tonight's picture was taken in June of 2009, and from my perspective it was classic Mattie. Mattie was in a physical therapy session with Anna. Anna was at the other end of the rope. Mattie and Anna were having a tug of war contest, while sitting on scooters. Naturally Anna could have just made Mattie do exercises to strengthen his arms and straighten out his legs. But rote exercises and movements were boring to Mattie. So this was just yet another example of how Mattie's sessions were transformed into active games, which were both fun and gave Mattie a work out. When I look back at these pictures I ask myself, how did I know to bring a camera to everything? The answer is I DON'T know! Maybe on some level I wanted to document the amazing fight Mattie was enduring and attacking head on, or maybe on some level I realized that these photos would be very important to me after the fight was over. But when your child is diagnosed with cancer, I can assure you that it is hard to think clearly at times, especially when sleep deprived. Despite that, I am so grateful that something within me pushed me to capture pictures, because tonight's picture illustrates the Mattie I knew and loved..... a boy with energy to take on a challenge.
Quote of the day: Death ends a life, but death does not end a relationship. If we allow ourselves to be still, and if we take responsibility for our grief, the grief becomes as polished and luminous and mysterious as death itself. When it does, we learn to love anew, not only the one who has died. We learn to love anew those who yet live. ~ Julius Lester
It is hard to imagine that Mattie died 55 weeks ago today. It honestly just doesn't seem possible. As time marches on however, my life seems more and more fragmented. Fragmented into two pieces, life with Mattie and life now without him. There are days when I struggle to remember my life as a mom. Was I ever a mom? When I saw Ann today, she asked me again whether I would like to stay connected by a listserv to the parents in Mattie's grade. She asked me this question last year, and I outright said, NO! This year, I had no response to the question. I am not sure how I feel about this form of connection. Naturally this listserv exists so parents can plan events and communicate with each other regarding grade level activities. I certainly am deeply fond of the parents I have met at Mattie's school, but this listserv seems to be a reminder to me of what is missing in my life, rather than as an outlet to connect with people who are part of my community. Perhaps in time this will change for me, but at the moment hearing parents talking about their children is still difficult for me.
Though I reflect on the loss of Mattie each and every day, as it is September 28, I also reflect on the loss of my maternal grandmother. Today was her birthday, and she would have been 103 years old! It is hard to believe that she died sixteen years ago. It too feels like yesterday. Though I was able to put my grandmother's death, over time, in context because she died in her 80's, I still find that I reflect on her life and the profound impact she had on my life. Keep in mind that my grandmother always lived with my parents and I and I was her only grandchild. So we were very close to each other and I can thank her for so many things like the art of cooking and learning to provide loving care to animals (especially those animals that were homeless!). So on this Tuesday, I reflect on Mattie and my Grandmother, Anne. May they be looking out for each other now.
I began my day by text messaging Peter. I had made a commitment to begin walking today, but when I looked outside, I wasn't inspired at all with the darkness. Peter encouraged me to try walking, and if it began raining, then I could just come inside. It made logical sense, but I needed that vote of confidence. Last night Peter armed me with two things. He gave me a pedometer to calculate the distance I was walking and he also gave me Mattie's ipod to use. I have to admit I had the foggiest clue how to use Mattie's ipod. Fortunately Mattie was more savvy than I am! When I started walking this morning, I felt as if I had Mattie in hand with me. I literally started walking, and within five minutes I felt aches and pains, but I just walked through the pain, until it disappeared. I landed up walking 2.93 miles, and I felt by the end I had accomplished something, and in the process the sun also came out! I realize I won't be able to walk like this everyday, but I also realize that establishing some sort of routine like this is good for my head.
This afternoon, I saw the beauty of technology unfold. I was able to continue dialoguing with the researcher I told you about in last night's blog. I learned more about the instrument she designed to assess psychosocial risk in pediatric cancer families. She is in Pennsylvania, and yet within minutes I had answers to my questions and documents being emailed to me. At the same time, I was keeping Dr. Shad (the director at the HEM/ONC pediatric division of Georgetown University Hospital) posted on my progress, and she was writing to me from Brazil. Somehow all of these connections made me feel as if I was accomplishing something.
This evening, I landed up doing laundry, and while undertaking that process I ran into a neighbor in our complex. This is a neighbor who knew me prior to Mattie developing cancer. She asked me whether I returned to work at the University and when I told her I hadn't, she wanted to know if I missed it. I am sure my change in interests and direction in my life are confusing to others. But in all reality, I am not sure how you could live and breathe what Peter and I did and somehow come out unaffected. It would be impossible! My neighbor asked me if helping those with cancer would depress me more, or serve as a constant reminder of Mattie's death. This was a good question, but my response was whether I help others or not, Mattie's death and his loss will always be a part of me. That simple fact is sad.
Peter forwarded me an e-mail he received tonight from a former colleague of his at Arthur Andersen, Bill. Bill is now the CEO at Network for Good, a non-profit which provides online fundraising services for nonprofits, including online donation processing, email outreach, and online surveys. The Mattie Miracle Cancer Foundation uses Network for Good to help us have an on line presence, to stay connected to our supporters, and we have found their tools easy to use and an asset for any sized non-profit. For more information about Network for Good, please visit: http://www1.networkforgood.org/
Bill participated in the Make-A-Wish Triathlon on September 25. The Triathlon is an exciting 1.5K ocean swim, 41K bike and 10K run for up to 1,000 athletes. Hosted in Bethany Beach, Delaware, the event is in its 27th year. Bill swan, rode, and ran in Mattie's memory, and was successful in raising a substantial amount of money to help the Make-A-Wish Foundation grant wishes to 33 children in the Mid-Atlantic region! Congratulations Bill and thank you for keeping Mattie's memory alive. Bill wrote, "I just wanted to say thank you for your support in Mattie Brown’s memory this weekend. It was a beautiful day, the race was great, and most importantly over $250K was raised by 400 triathletes – that’s 33 kids’ wishes which will now come true. You helped me do more than my share raising $1,100. I had a picture of Mattie Brown on my back and his courage on my mind throughout the race. I was happy with my time of 2:39 which earned me 79th place (didn’t win… but there’s always next year). Thank you so much for supporting me and for remembering Mattie."
All proceeds and pledges from the event benefit the Make-A-Wish Foundation® of the Mid-Atlantic, whose mission is to grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy. For more information about the triathlon, please visit:
http://www.midatlantic-community.org/Page.aspx?pid=500
I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Today is Tuesday and I am thinking of you... and of course thinking of your Mattie. Much love, on this Tuesday and everyday."
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