Thursday, June 28, 2012Tonight's picture was taken in June of 2006. One of our weekend rituals, was to take a walk as a family. It wasn't always to Roosevelt Island, but it did happen to be one of our favorite spots. Peter snapped a picture of Mattie and I together before crossing the bridge and entering onto the Island.
Quote of the day: Nowadays people know the price of everything and the value of nothing. ~ Oscar Wilde
Despite the heat, I must have walked 40 city blocks today. When I returned home I bumped into several people who I know either live or work in our complex. So I chatted and connected with them for a bit, and then returned to my chores.
I periodically stopped to think about tomorrow's palliative care panel, and I have been trying to get thoughts and feeling together for this experience. However, Deborah, a professional health care advocate who selected the panelists and will be moderating the panel, does not give panelists questions ahead of time. So in essence it is hard to prepare. She does this on purpose, because she wants the dialogue to be free flowing and for panelists to interact with each other. Typically I wouldn't agree to speaking in public if I do not know the content of what is being asked of me ahead of time, but having experienced this format with Deborah in November (for another palliative care conference), I saw that with the right panelists and moderators this can REALLY work beautifully.
Peter and I are presenting tomorrow with another couple we met in November. Our presentation styles are similar, and this helps us bounce ideas and feelings off of one another. What in essence Deborah is able to achieve is really almost like a talk show format. As I was sifting through thoughts today, I think my main goal for doctors, nurses, and hospital support staff to hear is that the issues we face and cope with, did not end the day our child died. That may be the last they saw us as patients and their obligations to us ended, but for us a different kind of pain began. A pain in which the solution is and can't be found in most hospital settings today. That is because the pain of grief is elusive, and just like our society, most hospitals aren't trained to deal with the feelings and thoughts associated with such traumatic loss. After all NO pill, NO IV, or surgery will cure this problem! Doctors and nurses are trained to heal, but what happens when healing isn't possible?! End of life care isn't for the meek, and because one is a doctor or a nurse, doesn't mean this person is well qualified to help you die. I saw that first hand. It takes a skilled doctor and nurse to achieve this goal! Those who ultimately helped us and continue to help us, are those individuals who aren't afraid to admit that they have no answers. That they are just as confused, upset, and angered over this as us. When you learn your child is dying and then dies, I can assure you, the last thing you want to be quoted is scientific information and medical-ese. You want a real human connection, such a connection is foreign to most doctors! It goes against their training and I suspect for some their personalities. Death and dying is solely about finding meaning, understanding, and remembering, and these feelings can only be explored through solid human connections.
Just when I think perhaps I am the only one feeling this way, I reflect on those who I have met that lost a child many more years ago than me. I remember meeting a mom at Georgetown University Hospital's remembrance ceremony last Fall (this is a ceremony the hospital hosts every fall for those of us who lost a child at the hospital). This woman, like me had an only child, and told me she lost her son TEN years ago. She enlightened me that time doesn't help, the loss of a child is always the loss of a child, and what I suspect is only those of us in this select club (the club that none of us asked to be admitted to), will truly know and appreciate what this really feels like.
No comments:
Post a Comment