Wednesday, July 30, 2014

Wednesday, July 30, 2014

Tonight's picture was taken on November 5th of 2008. Mattie was pictured with Linda, his child life specialist and Lesley, a child life intern. As you can see Mattie painted a little lamp for me. A lamp which I still have and sits by my desk even today! All of Mattie's artistic creations that he made in the hospital for me were priceless and are in essence a part of his legacy to us. Given Mattie's physical stance in this photo, you can tell that he already had one limb salvaging surgery. His right arm was bandaged and not pulled through his pajamas, but he was still walking. It was after his second limb salvaging surgery when he lost his mobility that all hell broke loose and we truly lost the spirit of our six year old son. Instead depression, anxiety, and PTSD took over. It is very hard for me to recall Mattie standing, walking, and running. Instead, I recall from November 2008 onward, when Mattie was wheelchair bound and need assistance with practically everything. 

Quote of the day: People come into your life for a reason, a season or a lifetime. When you know which one it is, you will know what to do for that person. When someone is in your life for a REASON, it is usually to meet a need you have expressed. They have come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally or spiritually! ~ Glen Rambharack

Peter and I went to Georgetown University Hospital today for two different reasons. The first reason was to meet with Linda, Mattie's Child Life Specialist and to shoot a video about child life services. A few months ago, my friend in cancer, Ilona, forwarded a video to me. She wanted me to see what a Georgetown child life intern had created to highlight the child life services offered at the hospital. I must admit when I saw the video I thought it was cute, but as I let the content sit and become absorbed in my head, I became less enthralled with it. Why? Because child life is more than just fun and games! Child life is substantive. It isn't just about parties and costumes. In fact, so much about child life centers around education, normalizing the experience for the child, distracting children during procedures and scans, using medical play, and helping children and families advocate for themselves within a medical system. That is only to name a few of the things child life accomplishes in a given day. In many ways child life is an imperative psychosocial service and no family should go through a hospitalization without such a professional! Therefore I asked Linda if it would be possible to make another video highlighting all aspects of child life, and she happily agreed! Which is what Peter and I participated in today. 



We sat outside with a professional video crew today! Mattie's memorial brick was in the background. You couldn't see it, but we knew it was there. In fact, the bench we sat on to tape our video segment belonged to our friend Tim (it was a memorial bench for his mom, a dedicated nurse and administrator at Georgetown). Tim just retired from the Hospital this month, but he was one of our biggest fans. Tim was an associate administrator of philantrophy and was the generous person who donated the Mattie brick to the Hospital! So it seemed so fitting that we would be sitting on his mom's memorial bench, which was selected for us today, we did not pick it. The interview lasted 40 minutes. We were asked all sorts of questions about Mattie, his disease, the impact on us, Mattie's loss, why we contribute to Georgetown and to child life, and in many ways the questions were truly meaningful. The interviewer and cameraman felt we did a great job. We shall see. I know Linda couldn't look at us, which is understandable since this is all very emotional for the three of us. We battled this road together. 

Raising money for child life is very personal for Peter and I. We are committed to Linda, who happens to be connected to Georgetown. Linda walked a very difficult road with us on a daily basis and cared for us in ways that are hard to describe and give words to, but she was there in unimaginable ways. Ways that I will never forget, and ways that inspire me to work very hard every May to raise money to support the Mattie Miracle Child Life Program fund. A fund which we started in 2011 at Georgetown University Hospital. 

It is funny though, as Peter and I sat together on a bench being filmed, we occasionally got stymied or tongue tied. It is hard to talk about emotionally laden content. It only happened a couple of times, but I am very aware of this problem with myself now. I can no longer talk extemporaneously about very emotional content especially when it relates to Mattie and his death. Well I can, but don't expect me to get my point across in a succinct manner. Which is why I must have notes and be well rehearsed. Which you can do when delivering a speech, you can't do that when being interviewed! But Peter knows this about me, he has a way of helping, managing to give me more time when people throw questions at me that catch me off guard. He always answers first, even when he may not have an answer! He wants me to just sit there and think, pause and get composed! VERY appreciated and thoughtful, and he can read when I need these moments or when I can freely speak. 

After the interview, we headed to our second meeting, which was a philantrophy meeting. At that meeting, Linda presented me with Georgetown Cupcakes! Which are my favorites! She gave them to me for my birthday. Linda introduced me to Georgetown Cupcakes when Mattie was battling cancer. Georgetown Cupcake is very generous to the Hospital and I know we all benefited from their generosity over the years. Needless to say, these little loves brightened my day and they reminded me of Mattie today, as does seeing Linda. When the interviewer asked me why I come back and do what I do at Georgetown, the simple answer is I do it for Mattie. I do it in memory of my son. Being at Georgetown helps me reconnect with Mattie. Somehow I feel his presence most at the hospital. Go figure, I know!

After our meetings, I had Linda walk me down to the adult outpatient cancer unit. I wanted to see how chemotherapy was administered on an outpatient basis to adults. I recently saw how this was done at another institution, and I wanted a comparison. I will share my commentary tomorrow on this experience, but if I think childhood cancer has a way to go psychosocially, the adult cancer world is in the dark ages.