Friday, January 20, 2012

Friday, January 20, 2012

Tonight's picture was taken in January of 2009 on the 102nd observatory floor of the Empire State Building. We lucked out that day, because there were NO lines to get into the elevators, and we were able to take our time and explore all the floors. Everyone working in the building was very friendly and considerate of Mattie and Mattie was committed to go as high up in the building as the elevator would take him. The height did not bother him, but being in a skyscraper fascinated him. This was his first and last trip ever visiting a skyscraper! We always called Mattie our "little engineer," because of his enjoyment and fascination with putting things together and understanding how they worked. Which was why we knew he would love his visit to the incredible Empire State Building.


Quote of the day: There is no education like adversity. ~ Benjamin Disraeli


My dad sent me tonight's quote, and I found it very applicable for my mood today. We are all faced with different types of adversity in life, and I suppose the issue is what do we learn from it? Today marks the 18th anniversary of my maternal grandmother's death. That might not sound earth shattering, after all, older adults do die and it is what we have come to accept as the natural order of life. However, regardless of age, and whether one expects a person's death or not, the death of a loved one is simply hard to accept and understand. My maternal grandmother lived in my parent's house, and therefore being raised in a multiple generational household, I assumed that my experience was normal and that everyone had such an enriching family life. Depending upon the context, there were times my grandmother was like a second mother to me, and then at other times she was like a much older sibling.

When I was in college, my grandmother suffered a massive stroke. The stroke left her paralyzed, with slurred speech, swallowing issues, and an altered personality. My parents continued to care for my grandmother at home for a year before placing her in a nursing home. However, the nursing home placement was a necessity since my mother got so ill from caregiving that she was in the intensive care unit for weeks. She was so run down from the physical and emotional toll of caregiving that she developed sepsis, however her case was so aggressive the medical staff did not know if she would survive or not. My mom was an outstanding, loving, and compassionate caregiver to my grandmother. So the apple, being me, did not fall far from the tree. Seeing my grandmother's body and mental state being transformed by a stroke was devastating, but seeing the ramifications of such a profound illness on a family system was equally as deadly. Which is most likely why entering graduate school, I began studying the impact of stress on family caregivers. Every research paper I wrote typically focused on this issue and naturally when it came time to select a dissertation topic, I felt the topic had basically picked me and not the other way around. My family's adversity inspired me to learn and to try to help others. However, I had no idea that now 18 years later, I would not only have the trauma of my grandmother dying, but also that of my son. Somehow both of these deaths seem to feed off of each other, despite being decades apart.

I spent the day working on various Foundation related items and one of the important components of the psychosocial symposium we are hosting on Capitol Hill in March is a parent panel. I believe it is very important for attendees to understand the ramifications of childhood cancer directly from the mouths of parents. It is vital to hear from the researchers and clinicians, but it is crucial to hear the stories, the struggles, and frankly the emotions of those who lived the battle. The first parent I asked to serve on this panel is Toni, Brandon's mom. As many of my readers know, Brandon was Mattie's big buddy and partner in cancer. When Toni received her invitation to speak, she called me immediately today to let me know that she would be there to support us and wouldn't miss this for the world. Later in the day when I was telling Toni I was having a bad day, her response was...... it was understandable and yet I am one of the strongest people she knows and she admires me. Toni is one of my friends I made through great adversity, and whether we wanted it or not, we got quite an education together.