Tonight's picture was taken in the Spring of 2006. Mattie was in Margaret's preschool class and I remember she sent me this photo of him in her classroom. Apparently he and his buddy Zachary were wrapping each other in paper. I of course was not surprised, Mattie loved paper, tape, and all sorts of things like that. The running joke in that classroom that year was that Mattie went through the classroom's colored tape supply I believe within the first month (or three months) of the school year! He literally taped the entire wooden loft in the class. They then has to talk to Mattie about the art of using tape. The art of Mattie, there was just no telling what Mattie was going to get into and create.
Quote of the day: Two people that have the same wants are two people that should be friends. ~ Shannon L. Alder
Tonight's quote reflects how I feel about childhood cancer... it has a way of uniting people. People who have never met one another, people who have absolutely nothing else in common in some cases, and people who do not share a Country of origin. The other day, Peter uploaded a video of the parent perspective speech that I delivered at the Institute of Medicine workshop in March in Washington, DC to his Facebook page. One of our friends on Facebook, who also lost his son to cancer, happened to like the video and he told me he was going to share it with his international community. I was very touched by his gesture.
Today, to my surprise we received an email from a professor of linguistics from Italy. She lost her nephew, who was only a year old to leukemia. Of course the fact that she lost her nephew to this horrible disease was terrible enough, but the way in which he died and what this family experienced was another psychosocial nightmare of GRAND proportion. This child was preverbal (being 12 months old) and therefore he was not yet talking. He did not have words to describe his pain, what he was feeling and he could not give words to his symptoms and the side effects of the medications. In addition, because he was such a young child, his doctors felt he did not understand what was going on and therefore did not need to have a voice or need to be comforted, have things explained to him, and worse they refused to allow the family to help this child express how he was feeling through non-verbals. In all reality from my perspective every aspect of this case sounded inhumane and unethical. Worse this family now is left knowing that this 12 month old was forced to die in his PICU room ALONE, without family by his side, as this was the hospital's policy. Do I have to tell you how saddened, frustrated, angered, and upset this family is over this child's death?
This child died five years ago, and the pain remains very fresh. I understand this very well. This professor has devoted her life to her nephew's memory and she wrote to me today because my recorded speech at the Institute of Medicine resonated with her. She liked my psychosocial message and she wanted me to look at her conference poster she was presenting today in Italy. Her research focuses on giving children in pain a voice, particularly children who are non-verbal like her nephew. Clearly this is accomplished through touch and non-verbals in order to assist children in understanding their medical environment. Isolation and abandonment are never acceptable or ethical and thankfully she has made it her mission to educate others about giving voice to pain.
After you lose a child to cancer, many of us could have easily just turned inward, or have given up, remained angry, and walked away. There are days we may feel like doing this, but then we remember our child and this re-ignites our passion and it drives us forward to make a difference and to help others.
What is for certain however, is that the our sharing of minds today had a way of uniting us, despite the fact that we really did not know each other. We survived childhood cancer and that trauma enabled us to speak the same language despite that fact that Italian is her primary language and mine is English. It did not matter. We got each other immediately and the fact that I understood what she was expressing, she felt that I gave her a huge gift. TO BE HEARD AND UNDERSTOOD! I could feel it all the way across the Atlantic!
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