Tuesday, May 8, 2012

Tuesday, May 8, 2012 -- Mattie died 139 weeks ago today.

Tonight's picture was taken in April of 2009. We took Mattie for a stroll to the Washington Mall, near the reflecting pool. It was a beautiful weather day, and getting out of confinement was important for all of us. We tried to make these short outings pleasant, but the level of exhaustion we felt was overwhelming. Though living in the hospital was beyond challenging, trying to care for Mattie at home had its own problems. There was no support staff in our home to give us breaks, and we were solely responsible for managing medications, pain, nausea, as well as his emotional and social needs. Which any one of these issues alone was huge, factoring them all together was superhuman.


Quote of the day: The wound is the place where the light enters you. ~ Rumi

It is an interesting quote especially in light of how I spent my day today. For the majority of the day I was at Georgetown University Hospital. I visited the HEM/ONC unit and saw and spoke with many of Mattie's care team. I saw his nurses: Tricia, Miki, and Ashley, one of the chief residents: Gisella, the Child Life staff: Linda, Katie, and Jess, and Dr. Shad. Some could consider the hospital "the wound." This is where Mattie was treated, where the memories of horrible pain, cancer treatment, surgeries, and Mattie's death are housed. Yet despite all of this, it is within this building that "light" does enter me. For it is because of these fine professionals who work with children who have cancer, that I feel motivated and compelled to support their work. Work, which during some weeks, seems to take it out of me. It is impossible to venture to the inpatient floor, without being flooded with some sort of emotion, and then when I talk with members of Mattie's care team, at times I just cry. But these are emotions that are okay there, because in the outside world, most people don't want to see my cry, and for the most part can't really comprehend the trauma we lived through.

I had lunch today with the psychiatrist who now works full-time helping children and their families battling cancer at Georgetown. We are getting to know each other, as I try to figure out ways the Foundation can potentially assist with these supportive services. Right now, the Foundation funds this psychiatrist's support group which he offers once a month to the pediatric nurses. We are pleased to be able to support the nursing staff in this way, since they are the ones on the front lines managing the incredible emotions families have living in the units and seeing their children so sick.

This evening, I return back to the hospital for a parent advisory meeting. However, that doesn't conclude my visit to the Hospital this week. I return there tomorrow night, for my follow up MRI. The MRI area of the Hospital, I unfortunately know it quite well and it makes me edgy. Mattie had more MRIs that I can count on two hands and each one seemed to have a traumatic component associated with it. Even those that were sedated were traumatic. Mattie would wake up from sedation agitated, disoriented, and either crying hysterically or angry. I preferred crying over angry. Angry was hard to manage, and for a six year old undergoing treatment, he had a great deal of strength and energy to be combative.

While talking with Paul today, the psychiatrist, his first question to me, was what was Mattie like before cancer? This is actually an excellent question, because it is through understanding Mattie, his healthy history, and our relationship, that it sheds light and gives context to what our family dynamics were like once he developed cancer. For the first several months of his treatment, I was at odds with the social workers, who encouraged me to take care of myself and get distance on occasion from the PICU. I refused to leave Mattie and the hospital floor. Which may have seemed odd, but certainly NOT odd if you understood are history together. Mattie had a challenging toddlerhood, and thanks to early speech and occupational therapy interventions Mattie overcame many of his delays and sensitivities. But it is through these differences, that our relationship became very strong. From day one, I had to advocate for Mattie and I had to hold my ground about his development with others. So rest assured, while battling cancer, if you were going to interact with Mattie, you had to go through me. Yes I was sleep deprived, at times edgy, but never became psychotic. Which is quite possible given our living conditions. As I said to Paul today, sometimes the best thing a support staff person can do is find a way for families to manage the situation, in ways that the family deems acceptable. However, over time, as I explained to Paul, you do develop trusting relationships with certain staff. Therefore, if these women expressed their opinion about something, I usually would listen. But this type of rapport building takes time, but at the end of the day, to answer Paul's second question, the greatest gift the psychological support staff can give a childhood cancer family, is the opportunity to feel connected, to feel heard, and to be a part of the treatment team. After all, it is this level of connectiveness that keeps me coming back to the Hospital!