Monday, October 31, 2011

Monday, October 31, 2011

Tonight's picture was taken in October of 2008, the last Halloween Mattie celebrated. I captured him on the Hospital elevator as he was going trick or treating from floor to floor. He was energized for that adventure but once it was over he was exhausted and very depressed. Mattie collected a good deal of candy that Halloween, but the ironic part was Mattie did not like candy. He spent a good portion of his time post-Halloween, sorting the candy he collected into piles by type, and literally he sold his candy to me and his caregivers for pennies. I do recall that year, when Mattie went trick or treating with Zachary, that a few houses gave out pretzels and chips. Mattie was thrilled, Zachary wasn't as much. The beauty of friendship was that Mattie and Zachary swapped chips for chocolate, and in the end they were both happy!

Quote of the day: Happiness is not a reward --- it is a consequence. ~ Robert Green Ingersoll


This afternoon, I received an email from Linda, Mattie's Childlife Specialist. Linda reflected in the email to me that she saw a child dressed up in a mummy costume in the hospital today, and couldn't help but think of Mattie. Linda's email meant a lot to me, because I find as time marches on it is very easy to feel very disconnected from others and from this child based holiday.

I still remember the process of how Mattie chose to be a mummy for Halloween in 2008. By October 31 of 2008, Mattie had completed his first limb salvaging surgery. His right arm was bandaged up in fact, and therefore Mattie was very cognizant of his differences and wanted a costume to hide his arm. The Lombardi Clinic, thanks to Hope for Henry (another pediatric cancer organization), is given hundreds of costumes each year for children who are sick. That year, Linda, Jenny and Jessie (his art therapists), allowed Mattie to be the first one to go into the clinic room to pick out a costume. The selection process for Mattie was harder because of his physical disability, and though this was never stated, I appreciated the fact that these women understood this. It would have been much harder for Mattie to find the right costume with the other children running around him and asking him questions. As soon as Mattie spotted the mummy costume, he knew this was what he wanted to be. He even tried on the costume right there in clinic, and it really worked for him. In a way, it made him feel like everyone else, because you couldn't see his bald head or bandaged arm.

Mattie celebrated Halloween in 2008, both in the hospital and with his preschool buddy Zachary. This evening, I went back to the blog on Halloween of 2008 and came across this picture of Zachary and Mattie together. Zachary was Indiana Jones and Mattie was according to Zachary "a Mummy Dude." The reflection that I wrote in 2008's blog, remains quite vivid in my mind today. But then again, I think the kind of friendship Mattie and Zachary had with each other was very special. I wrote, "While trick or treating, Zachary and some of his neighbors who went around with us, were running ahead in excitement from door to door to collect candy. However, Mattie was having a hard time keeping up (he had surgery about two weeks before Halloween). Mattie expressed his dissatisfaction and was getting upset. The beauty of what I observed next, I will try to describe. Zachary was absorbing what his mom was saying to him regarding Mattie, and also he was hearing or seeing Mattie's level of frustration. Zachary then told his neighbors that Mattie was his friend, and Mattie couldn't move as fast as them right now, and if they did not like it, they could trick or treat without him. It was almost hard to believe this dialogue was coming from a 6 year old. Because to me this was a very mature and thoughtful comment, and speaks to the strength of their relationship, a relationship that evolved over two years in preschool. When I see Mattie interacting with his friends. It is always hard, because I know he can't do the things they are doing now, and I know this can upset him at times. But then I also notice that through these rough times, I see the beauty of those around us. Zachary's simple comment today was case in point. Friendship goes beyond one's physical abilities and limitations, and instead is defined by something much greater, such as respect, loyalty, trust, and the sheer enjoyment of being with another person. I observed this tonight."

This evening Ann sent me a picture of her son wearing the Creeper mask I created. This is the second costume I have designed for one of Ann's children. The first one was a Greek goddess tunic. Fortunately when Ann asks me to do these things, she doesn't mention that a costume contest is involved. That would probably stress me out! Two years ago, Ann's daughter won a contest wearing the tunic I created and tonight apparently Ann's son won the "most creative" costume award at their neighborhood parade. So I would say I am 2 for 2! This is the most upbeat news I have to share for the day.

I never left our home today and I found by the time Peter got back from work I was snapping at him left and right. Certainly not intentional, but some times it is easier to take one's aggressions out on those closest to us. Though it was Halloween today, for me, it was as if I was living on a completely different planet, disengaged, isolated, and not fitting in. It seems with each year as we move further away from Mattie's death, the holidays only get harder, more complicated, and uneasy.