Friday, June 29, 2012

Friday, June 29, 2012

Tonight's picture was taken in June of 2006. Mattie and Peter attended a "Day out with Thomas" with his buddy Zachary and Zachary's dad. Mattie and Zachary were in LOVE with Thomas the Tank engine, and for them it was a great thrill to see a life sized version of Thomas. Not only to see it, but to experience Thomas as the actual engine of their train. This was a memory Mattie recalled often!



Quote of the day: In prosperity, our friends know us; in adversity, we know our friends.  ~ John Churton Collins

Today's palliative care panel was a powerful experience. It helped that we met the other couple presenting with us in November, as well as knowing the moderator. As soon as the other couple entered the auditorium today, we all instantly reconnected. In fact, do you want to know what this couple said to us before we began the presentation? They said, TIME DOES NOT HEAL ALL WOUNDS!!! This couple is talking my language, and gets it. We all try to continue living and moving forward, but like this couple admits, some days you take two or three steps backward. This is the reality of losing a child, that so many people can't or do not want to understand! There is NO quick fix to grief, it takes time to heal and a whole lot of support. However, as so many of us have found.... supportive friendships drift away over time, because it isn't easy to sit in grief and help someone through it. We are a society of doers, and when we as friends can't do anything to help a griever, frustration sets in. Frustration is one thing, but living with the reality of the loss and the loss of friendships from cancer are far greater pains to live with. 

In the audience today were attending physicians, medical interns, nurses, social workers, and child life specialists. The presentation was also being recorded so it could be shared with other hospitals in Georgetown's network. Eleven familiar faces were in the audience for us, and I know that hearing Mattie's story for those who treated Mattie is not easy either. Though I may write on the blog every day, I would imagine that the things Peter and I talk about during the panel presentations maybe surprising. Because in the presentations we talk about how Mattie's cancer and death affected us as a couple and how we have had to work through this to stay connected with each other. In addition, many of my comments are very targeted so that those in the audience can understand how living in a hospital impacts a family, and what medical personnel can tweak or do differently from our experiences. For example, I am not sure even people who read the blog know that as Mattie got sicker and spent more time in the hospital, he disliked hearing noise and people talking. Which is one of the reasons, I hate talking on the telephone today. Regardless of who you are!

I have been conditioned by cancer to hate the phone! In fact, upon admission to any hospital room, the first thing I did was disconnect the hospital phone! So if Mattie hated hearing noise, which included Peter and I talking to each other, how did we as a couple communicate??! The answer in our case was by using our Blackberry. Peter and I would text message each other back and forth in the hospital room and at HOME, so Mattie never heard us talking. This may explain why the Blackberry is vital to my world and it is always attached to me. I have been conditioned to type in order to express myself! If you want to see me get upset, you just need to take my Blackberry away from me. This device hosts a personal and meaningful connection to me. It is a symbol of freedom, of self-expression, and security. My coping mechanism which was created under terrible stress, fear, and trauma.

I tell the audience all of this and much more because they have to know that when they enter a patient's room, usually on THEIR schedule and NOT ours, it may not always be the best time. They have no idea what they are walking into or what just transpired minutes ago between family members, as they enter a room. In our case, if Mattie did not like hearing Peter and I talk, I can assure you that he REALLY did not want to hear the talking of a stranger. Therefore getting to understand your patients on a deeper level, other than through their medical charts is crucial to effective treatment.

Peter and I answered a host of questions today, but like I wrote last night on the blog, one of my goals was to enlighten the attendees to the fact that the death of a child may sever the connection hospital personnel have with their patient's families, but for us, the pain continues! Yet who is to help us once we leave the hospital? For us, we spent 14 months living in the hospital, in which those around us became our caring network and family. What happened on September 8, 2009, when Mattie died? The answer is we entered the hospital as a family of three, and left the hospital with only two. I can recall that feeling like it were yesterday. Because the feeling of being only two remains within us always, as if a significant appendage was left at the morgue of Georgetown's Hospital. Yet we are fortunate that several of Mattie's care providers stay in contact with us, and though this is no longer part of their job, it speaks to the connections we all established with each other. It is these human connections that matter most to those who are grieving.

One of my final thoughts was directed to the medical interns. As they become physicians, they need to consider what distinguishes a good doctor from an outstanding one! For this is not something they will learn and ponder through  medical school! Programs which train and almost reward physicians for maintaining emotional distant with their patients! I told them if they are training at Georgetown, that they already are considered among the best and brightest, but if they truly want to make a difference in the lives of those they care for, they MUST learn to develop their human side. That sounds simple enough! But it isn't. I have interacted with a ton of physicians so far in my life, and I unfortunately can count on ONE hand those who I consider outstanding practitioners. It takes more than competency and skill to be an outstanding physician in my mind. It takes the skills which arise from the SOCIAL SCIENCES, yes the softer sciences to make them successful. Doctors need to learn to listen, try to understand, and empathetize with their patients and families whom they interact with. Certainly as a child is dying, no parent wants to hear medical jargon and facts, we want to know that you are walking this journey with us, even if the journey doesn't involve a known path. A dying child forces doctors to be vulnerable, as well as accept that they are not in control of life and the potential for a cure. Watching a child die, brings us all back to basics.... and these basics involve being authentic and human.