Tonight's picture was taken around Halloween of 2008. Mattie's last Halloween with us. We weren't sure Mattie would be able to trick or treat because two weeks before he had his first limb salvaging surgery. In fact, Mattie right arm was still bandaged during Halloween. This made Mattie very self conscious and he knew this really made him different from others. The HEM/ONC clinic invited Mattie to the hospital to pick out a costume of his choosing. The beauty of this was Mattie's art therapists allowed Mattie to select a costume the day before everyone else. They knew Mattie did not like crowds and was also very guarded by his wrapped arm. Mattie was the one who picked out this costume. It just spoke to him and what he loved about it, was you couldn't really tell his arm was not usable. This photo was taken on the hospital elevator, as Mattie was walking around the hospital trick or treating in many of the administrator offices!
Quote of the day: Every human walks around with a certain kind of sadness. They may not wear it on their sleeves, but it's there if you look deep. ~ Taraji P. Henson
Today was one of those red letter days. I am back to not feeling well with kidney stones. The problem with small stones is there is really nothing you can do but wait for them to pass. Yet it is the waiting that can drive you absolutely batty. I should be used to this by now, since I have been dealing with them since September of last year. I can feel fine for one month or so, and then forget it.
However, I also learned today that one of my friends (her daughter was in Mattie's preschool classes) who has been struggling with cancer is losing her battle. This is just devastating news for her husband and daughter. When you find out that a loved one's cancer has become terminal, it really takes your breath away. Yet as a caregiver you can't fall apart because you serve a vital role. Throughout a cancer journey HOPE changes. In the beginning hope is about curative intent.... that you want the medicine and surgeries to do their job and eradicate the disease. However, over time if one doesn't respond to treatment the notion of end of life care is presented. Certainly the original hope disappears, but hope at that point gets transformed to finding a way to relieve pain and to provide comfort care. As a caregiver and a patient, one must always have hope at every step of the cancer journey, otherwise it becomes truly impossible to manage on a day to day basis.
Mattie is the second from the left, in the bottom row. What is so
special about these works of art is that the spirit and essence of our children
is memorialized. Our children will always be beautiful and special to us, and
though they had cancer, that doesn't completely define them. These photographs
help to remind us of this and to remember the happier and more innocent moments
of their childhood.
No comments:
Post a Comment