Tuesday, February 7, 2012

Tuesday, February 7, 2012 -- Mattie died 126 weeks ago today.

Tonight's picture was taken in February of 2004. Mattie was dressed up to go to a birthday party. He was almost two years old in this picture and an absolute bundle of energy. He was always on the go and alert. Which is why it seems almost  impossible to accept that he developed cancer four years later. As today marks the 126th week of Mattie's passing, we can't help but remember him and the enormous ways he touched our lives!




Quote of the day: Physical strength is measured by what we can carry; spiritual by what we can bear. ~ Unknown


Peter and I started our day bright and early at Georgetown University. We had a meeting with one of the MBA student groups that we are working with this semester. The group presented us with an idea that incorporated LEGOs into a hospital setting, specifically as a way of getting typically developing children to interact and relate to children with cancer. The ideas were clever and have creative possibility. But one crucial component was missing. This group has no experience working with children. Not having the insight of a teacher or of being a parent limits one's ability to design curriculum and activities to engage young minds. This to me is vital to anything one does.... you must understand your target audience. If you don't, then you need to either read about it, ask questions, and simply get smart on it. Having raised Mattie has given Peter and I great insights into the mindset and interests of young children, and certainly while Mattie battled cancer, we got a first hand view of what was doable and engaging to him while he was sick. However, unless you understand your target population, then you will not know that parents of healthy children may be apprehensive to have their children come to the hospital and see children so ill. In addition, it isn't always feasible for children in the hospital to play with healthy children because of being immunocompromised. Certainly playing with the same toys are definitely not a good idea. So again, knowledge of your population is key because without, the best ideas will fail.

Later in the day, I had the opportunity to have lunch with a friend whose son is a cancer survivor. However, our cancer experiences were like night and day. Not only because my son died and her son lived, but because of the sheer nature of the cancers. Mattie's cancer was extremely aggressive, his treatments were ALL inpatient, and the significant impact on Mattie's physical and mental health were profound. By the time our lunch was over, we could only conclude that we felt differently about childhood cancer. Rather ironic, but I am pointing this out to my readers because you can't assume that every parent who lives through childhood cancer will react, think, and feel like me. Today's lunch was not unusual to me. I had this issue in the hospital while Mattie was battling cancer. Not all parents and I saw the issues in the same light. Which is why when I found Toni, Brandon's (Mattie's big buddy) mom, she was a breath of fresh air. We understood each other, the situation, and were very good at verbalizing the issues, problems, and our feelings. It does come down to the simple fact that we all need to be understood and to feel like we are not alone through a scary and nightmarish process. For me, having Toni and Brandon helped normalize a very abnormal situation and when I felt the need to scream, cry, or isolate ourselves, they got it, no explanations were needed. Which is why we selected Toni to serve on our parent panel at our Mattie Miracle Symposium on March 20. Like myself, Toni is feisty, and it is that passion that is important to tap into because it conveys the true reality of living with childhood cancer.