Saturday, January 6, 2018

Saturday, January 6, 2018

Tonight's picture was taken in August of 2009. A month before Mattie died. Mattie was in the clinic and absolutely miserable. He was dealing with terrible pain, as his cancer had spread throughout his body. The black box next to Mattie was a pain pump, which was connected to him 24 hours a day. Yet even that did not cut it, and Mattie would need extra boluses of pain meds through his IV. I snapped this photo because Mattie's art therapist, Jenny, brought in a special toy she was holding for Mattie.... a remote control dinosaur. She knew how much he loved dinosaurs and the mechanics of toys. Despite his intense pain, which would have sent the average adult jumping out the window, he found the strength and courage to play. 


Quote of the day: Anything that’s human is mentionable, and anything that is mentionable can be more manageable. When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary. The people we trust with that important talk can help us know that we are not alone. ~  Fred Rogers


I had an electronic conversation with a friend today and we were reflecting on the beauty of children with cancer. Specifically we got to talking about children and their behaviors as they are dying. Yes I know, not a conversation for the weak of heart, but that is what I like about my friend. We can talk about the horrors of childhood cancer and the inner beauty of the child's spirit that cancer can never take away. Despite its best attempts.  

One thing that is consistently true about children is they have an inner force to live and truly fight dying. You can see this courage and strength in the way they continue to play, smile, and want to engage with those closest to them. I am not sure adults die in this fashion, in my experience helping two die, it was a very different process from watching Mattie die. Perhaps it is my perception, but I don't think so. Even when a child is dying, there seems to be a spurts of energy or glimpses into the steadfast personality and spirit.

Upon reflection I saw it with Mattie in the last month of his life. I think the photos below help to illustrate what I am talking about. 

In this photo, Mattie was sitting outside on our deck, really unable to move or breathe, and yet he and Peter were playing with his remote controlled boat. Mattie loved water play and boats and his dream was to one day own a boat (A REAL BOAT) and to be a ship captain. This was an activity Mattie loved to do before cancer came into his life, and because he was dying, this did not change the activities that most interested him. We may have had to alter how he engaged with the activities, but his interests were consistent. 

As you can see, water play was a big part of Mattie's life. This photo was taken on August 5th, the day we learned that Mattie's cancer was terminal. Yet here he was, playing in the clinic with a hand crafted boat that he made and having boat races in a tub of water. 

Mattie and his Legos. Mattie was a huge Lego fan. Before cancer and during it! While in treatment, Mattie completed every known Lego kit on the market. As Mattie was getting sicker, he had a harder time relating to people. Yet if they walked in his room and started asking him questions about one of his Lego creations, he would pipe up and respond. Legos became a therapeutic tool for us, and frankly when we were working on a creation as a threesome, for a couple of hours we would try to forget why we were confined to a hospital. 

Mattie building a NYC taxi! This taxi is on display in our living room. Thanks to Mattie's child life specialist, a special event was planned for Mattie in the Lego store at our local mall. Mattie got to enter the store after hours and work with two Lego building experts. They gave him the choice to build any kit he wanted to in the store. Since Mattie had done every kit imaginable already, they then asked him what he wanted to build. He said a New York City taxi. Most likely from his recent experiences in NYC to attend Memorial Sloan Kettering for experimental treatment. There was no kit in the store for such a taxi, so the experts designed the taxi from their own knowledge and understanding of Legos. Mattie absolutely loved working with the team of experts and fit right in with them. 

Mattie always wanted a ride on vehicle when he was well. But given the expense of such an item, I always said no. However, when your child is dying, it is amazing how your perspective can change. My parents bought Mattie this car, which Mattie called "Speedy Red." Peter assembled it and then I rode on it with Mattie to teach him how to drive. Ironically Mattie had a sixth sense for how to drive, how to use a gas pedal and break, and how to steer. If you look closely you can see that Mattie was attached to oxygen. Which he needed full time, along with his pain pump. 

Mattie had excellent fine motor skills. He did right from the beginning. While he was in treatment, he became friends with Deborah, the bead lady. This was one of many beaded creations Mattie made me. Naturally his pieces are priceless to me and are part of his legacy. 


All the photos I shared tonight were taken in the last month of Mattie's life. I think it is amazing actually given the amount of pain he was in, not to mention the fear and depression he was battling. Yet the Mattie we knew prior to cancer, interested in all sorts of activities, was the Mattie we had with us for the most part during treatment. He may have shut people out of his life and disengaged with friends, but we tried to keep him busy with distractions and activities that always defined Mattie.