Tonight's picture was taken in November of 2003. We have various pictures of Mattie in our kitchen sink over the years. This was one of his favorite places. He loved sinks and tubs, which were COMPLETELY empty of water. He seemed to appreciate these cozy places and as you can see he had a big smile on his face in the process.
Quote of the day: Tearless grief bleeds inwardly. ~ Christian Nevell Bovee
I began my day by walking 2.5 miles with Ann. It was a deceptively cool day, but it was nice to be outside and in the sunshine. Later in the day I headed to Union Station to pick up my lifetime friend, Karen, who was coming into town from NYC. Karen is staying with us through the weekend while her school is on winter break.
Karen and I had a chance to chat and catch up this afternoon, and she also got to see our home somewhat cleaned up. She noticed my kitchen table immediately and of course the lack of piles. The last time she stayed with me, which was in May of 2010, she could recall that there were piles everywhere. But as Karen likes to say, it always looked organized. Perhaps organized chaos.
Later in the day, Karen and I headed to Ann's house for our first official face to face Foundation Walk planning meeting. With around 15 walk committee members present, we had a very successful and productive meeting. It is amazing to look around the room and see all the people who are connected to us because of Mattie. Many of the people in attendance I met either at Mattie's preschool or kindergarten, and supported us through Mattie's cancer, and continue to go above and beyond. For that we are truly grateful. We spent a portion of tonight's meeting updating the team about the Foundation's happenings and mission, and then discussed the theme for this year's Walk and how it ties into our mission. As so many of you know, our mission involves education, awareness, and advocacy for pediatric cancer. However, our main focus is to address the psychological and social needs associated with pediatric cancer care and survivorship.
This year's Walk theme is FACES OF HOPE. We have invited two teenagers who are osteosarcoma survivors to speak at the opening Walk ceremony this year. They are Lauren Chelenza and Noah Grove. I will be telling you more about these special people shortly. However, I am thrilled that they will be with us this year and I believe they are true visions of hope.
I also announced to the planning committee that all funds generated from this year's Walk will go to Georgetown University Hospital's Childlife program, to hire a part time childlife specialist who will assist children and families on scan and procedure days. Scanning days for a child with cancer can be unbearable for many reasons. The reasons are so numerous but here are the top candidates of stress on scan days: 1) Typically children are sedated for scans, and therefore can't eat the entire day until the procedure is done. So hunger is a factor. 2) In addition, there is a great deal of waiting around until the scanning equipment is available, so this means that until children are sedated they have a great deal of nervous energy that needs to be channeled in play. 3) For parents and caregivers, waiting around for testing, while trying to entertain your child becomes an impossible and exhausting task. Especially when the fear, stress, and anxiety build over what the scans will reveal. Remember that scans are done periodically to assess for the effectiveness of treatment and to look for disease progression. 4) After the scanning procedure is over, then the waiting game begins, until you receive the testing's results. I assure you even waiting five minutes for results feels like an eternity when it involves the health of your child. Many times the results are revealed on the same day as the test, and having to hear this news alone is daunting. I can recall scan days vividly and I remember the sickening feeling that would come over me when I saw Mattie's doctor walking into clinic to share the scan results with me. In Mattie's case, each scan result was more grim than the one before it. I was fortunate that I usually had Linda (Mattie's childlife specialist) or Ann with me. But not every family is this lucky, many go through this alone.
Therefore, our Foundation can't think of a more meaningful psychosocial resource to provide Georgetown University Hospital than the hiring of a part time childlife specialist. This specialist will have access to helping hundreds of children and families, and I know from first hand experience, our family couldn't have managed without Linda, Mattie's childlife specialist. However, there is only one Linda and she can not accompany all the children and their families on each and every scan. It is our Foundation's goal to try to meet this psychological and emotional need through funds generated at the Walk. The Walk planning committee felt very empowered with this mission, and I am happy to report that we are well on our way to having a successful Walk.
I would like to end tonight's posting with a message I received from a former student. Ariel has been inspired by Mattie's battle and story, and decided to go back to school to become a HEM/ONC nurse. As I told Ariel, this career decision is a nobel one and one that requires a person with great inner strength, character, and compassion. All qualities Ariel possesses. I was a very fortunate educator, because I had very special students. Students who wanted to learn and students who wanted to make a difference and help others. This is the one aspect of teaching I greatly miss. I gave a lot of myself to teaching, but I found when I had students like Ariel, it all seemed worth it. Ariel wrote, "I completed another semester of nursing school (22 credits), which means that I have 42 credits down and 18 to go for this portion of the program! Since September, we have been rotating through 5 different concentrations, which are each 5-week intensive courses. I completed my pediatric rotation at the end of the fall semester and for my clinical I was assigned to the HEM/ONC floor at CHONY. While it was definitely challenging to see so many children suffering from cancer, the experience solidified even more that pediatric oncology is the specialty for me. I want to do everything I can to help these children and their families going through the horrific battle. I felt like everything during this 5 week experience made me think of Mattie. I was reminded of all that Mattie suffered through, which brought about a lot of emotions for me. At the same time, I couldn't help but remember what a brave and incredible boy Mattie was, who inspired me to choose pediatric oncology as my specialty. As I've told you before, I can't even imagine the pain that you and Peter continue to feel on a daily basis. As others have told you in the past, nobody can tell you how to grieve or how you should feel. You continue to amaze me with all that you do and your ability to continue to pour out your honest thoughts and feelings on the blog. While it can be difficult to read about how much you and Peter hurt, I know this is your reality and I appreciate your openness and willingness to continue to share it with all of us. I have learned many important life lessons through you and the blog. I also wanted to thank you for the sweet note you wrote to me on the foundation letter that was sent out. The magnet for the 2011 Mattie Miracle Cancer Foundation Walk is hanging on my fridge. PS: When I was walking near school, I saw what appeared to be a HUGE bug on the sidewalk. I couldn't believe my eyes, and then realized it was a plastic bug. It immediately made me think of Mattie and I'm sure he would have gotten a kick out of my reaction!"
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