Friday, October 31, 2014

Friday, October 31, 2014

Tonight's picture was taken in October of 2008. Mattie was dressed as a mummy and trick or treating in the hospital. In fact Mattie went trick or treating twice that day. Once at the hospital and then in the evening with his friend Zachary, around Zachary's neighborhood. Though Mattie was smiling here, this day at the hospital was challenging for him. Hospital trick or treating is a BIG event. Mattie never did well with large productions, lots of people, noise, and congestion. So Mattie did shut down along the way emotionally and this was very difficult to watch and experience within a six year old. The story behind this costume was adorable and worth retelling. We were invited into the clinic a day or so ahead of time to look at costumes. Mattie's art therapists knew that Mattie really needed alone time to go through the costumes and make a decision without other kids around. Especially since Mattie just had his limb salvaging surgery a few weeks prior and his right arm was all bandaged. Mattie was very protective of his arm and gingerly walked around. Therefore if he had to compete with other well bodied kids for a costume it would never have worked out. Mattie would have probably shut down and sat right in a corner instead. Mattie's art therapists instinctually knew that. When Mattie looked through the costumes within the clinic (costumes are provided to children with cancer for free by the Hope for Henry Foundation) he immediately gravitated to the mummy costume. He seemed to know that he could hide his bandaged arm inside it and he was absolutely right!


Quote of the day: Nor should they be, but everyone needs to feel they're part of something worthwhile. That, in the last analysis, their life has some meaning in a larger context. The questions is what am I part of? What have I done? ~ Julian Fellowes

In honor of Mattie, I thought I would post some photos of him from Halloween of 2009, his last Halloween with us. This was Mattie with his buddy Jey. Jey considered Mattie his "little brother." In fact, on the day Mattie died, Jey came upstairs from the CT and radiology area to transport Mattie's body to the hospital morgue. He said that NO ONE ELSE was going to do this. When Mattie died, Jey said he could no longer do the work he was doing at the hospital and he left his position in the CT and radiology department. He still works in the hospital but not in the same capacity. Mattie's life affected him profoundly and as I tell Jey, his life affected ours as well! Jey is one of the people who made an enormous difference to my quality of life and about how I felt about being in the hospital. I felt like I mattered as a person, that someone cared about me and my son, and he is a person who simply cares about people. You can't train or pay someone to feel that way, it is just a part of Jey. 

Another person who was instrumental to my quality of life was Jenny. Jenny was Mattie's art therapist. Jenny worked diligently with Mattie on this amazing Haunted House! This house had ghosts and this wired witch. All sorts of things going on inside the house as well. Mattie gravitated to Jenny, as did I. Though always professional, I felt enormous empathy from Jenny and that I wasn't alone in my emotions, my confusion, my despair, and she helped to provide outlets of creativity, expression, and joy for Mattie. In addition, I have many of Mattie's wonderful creations all over my house which I am forever grateful for!

This was Mattie's creation of the Haunted Pumpkin! He designed a pumpkin and gave it a cape!

This is Whitney! Whitney is part of the dynamic duo as my mom used to call them. Whitney and Lesley were child life volunteers early on in Mattie's stay at the hospital. Mattie loved both of them. They were both extremely loving and nurturing. 

Me and Mattie!

My Mom and Mattie!

Pictured with Mattie was Sally the Story Time Lady! Sally is no longer at Georgetown Hospital but she is incredibly talented! Sally had a way of telling a story and capturing your mind, heart, and attention. Mattie LOVED Sally and usually wanted to participate in all of her antics!

I end tonight with a photo of Mattie with Brandon! Brandon was instrumental in our world! Though there was a significant age difference between these friends, it did not seem to matter. They both got something from the other and it worked. Mattie trusted Brandon and he felt Brandon understood him! We will always be grateful for their special bond.