Tonight's picture was taken in March of 2009. I selected this picture because I wanted to show you, or remind my loyal readers, the type of leader and charmer Mattie was. This was a scene from a typical physical therapy session for Mattie. It was not unusual for Mattie to participate in therapy with a loyal following. In the front row you can see Brandon, Mattie's big buddy (who even sang and dance to ABBA for Mattie, now that is a friend!), and Meg (one of Mattie's favorite childlife interns, who was Mattie's racing buddy and knew how to pull him out of some major funks). Right next to Mattie was Mary, a wonderful childlife volunteer. Mary was a force too, and literally you needed to be bold to handle Mattie. On the other side of Mattie was myself! As you can see the praying crane origami mobile came with us as well. It was what made Mattie's IV pole stand out from others, and the cranes were a conversation piece as we traveled through the hallways. The fifth floor got used to our ABBA sessions, and at times we had people sing and dance along with us! So clearly there was a great deal of pain in fighting cancer, but also through the battle, we met remarkable people who helped Mattie and I in extraordinary ways.
Quote of the day: A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. But in Yiddish they say there is no word for a parent who loses a child. That's how awful the loss is. ~ Jay Neugeboren
It is hard to believe that today signifies the 56th week of Mattie's passing. How could all this time slip through our hands and yet it seem so fresh to us? This quote says it all! There is NO word to describe a parent who has lost a child. It simply is not natural, and worse it is so devastating and painful, that there is no word in the English language to capture the feeling! I couldn't have said it better myself. In addition to reflecting on the loss of Mattie today, I also have to pause and reflect on Ann's dad who died one year ago today. As I was in shock last year after Mattie died, and running on pure adrenaline (from 24 hour, 7 day a week care of Mattie for 15 months), I needed another crisis to move to in order to function and focus upon. Ann's dad died about a month after Mattie, and helping her with her dad's care right after Mattie died was my coping mechanism. I am not saying this was an effective way to handle my grief, but it is what I did and how I managed living day to day. My participation also seemed natural based on the closeness that Ann and I developed in her role as our Team Mattie coordinator. The unfortunate irony is that through helping each other through Mattie's death, and her dad's death, this brought us closer together. So on this Tuesday, I pause and think about my Mattie, and Ann's dad, Sully.
I woke up this morning after a horrible night of sleep. I was up and down all night and couldn't get comfortable. So I knew I had to make a doctor's appointment today. However, the only time the doctor's office could see me was 45 minutes before my meeting at Georgetown Hospital. I wasn't thrilled by this, but I know my health is important, and when I feel this way, antibiotics are the only thing that helps. The logistics of getting from where my doctor is at one hospital to Georgetown Hospital in this tight time frame is literally mission impossible. When I got to my doctor's office, I saw her new nurse practitioner. When she entered the room, she commented on my purple sweater and how she felt purple was my color. She continued on about colors, and her warmth caught my attention. I later learned as we continued talking that she was an adult oncology nurse at Georgetown University Hospital. It figures, she had that special quality about her. She then asked me why a person who lives in DC, goes to a VA hospital. I explained it was a long story, I told her Mattie was born at this VA hospital and went to school in VA. But then I broke it to her that Mattie died of osteosarcoma. She was saddened to hear this news, and then began to talk with me about this loss. She said that losing a child is NOT a loss one ever gets over, and she couldn't get over what I have been through so far in my life. As I was going to get off the examining table, she grabbed my hand, helped me down, and said that I deserved to be cared for in a special way. Needless to say, I was deeply touched by her concern and empathy, but frankly it is the empathy that only could be given by someone in the medical profession who understood the battle I faced.
After this appointment, in which I secured antibiotics, I jumped into the car and drove to Georgetown University Hospital. I am usually not adventuresome at trying short cuts, since I am directionally challenged, but today, I moved beyond my comfort zone, and navigated my way. I must confess I have watched Peter enough over the years, since he is outstanding at getting from point A to point B in the most direct manner. Today, even Peter would have been impressed by me. I did get to Georgetown late, but I had sent Mattie's social worker a message alerting her of my delay. When I got there, Dr. Shad (the director of the pediatric HEM/ONC clinic, and the doctor who helped Mattie die with some sort of peace), was just arriving to the Hospital. So it was good timing. I met with Dr. Shad, one of the pediatric psychiatrists, Mattie's social worker, the lead pediatric social worker, and the head of the pediatric art therapy program at the Lombardi clinic. We went through my handouts, I showed them the actual psychological instrument (or questionnaire), and we discussed how this instrument is currently being used at other facilities. It was a very productive 90 minute discussion, and I felt good to know that Dr. Shad felt that I explained the instrument in a succinct and effective manner, so much so that it made it very easy to see the importance of having such a screening instrument. The mental health team will discuss their thoughts about my presentation later in the week, but I felt as if I did accomplish what I set out to do today. In addition, Dr. Shad and I discussed other ideas I have to help support families psychosocially who are touched by cancer. I appreciate her openness to brainstorm them with me, and for also being so supportive of the Foundation.
Later today, I went to go visit Ann's mom, Mary, who was admitted to the hospital. Having spent a great deal of time with Mary during her last hospitalization in January, I am very familiar with her needs and the pace of things at the hospital. In a matter of hours, Mary was visited by so many different teams of doctors. However, she was tired and wanted to sleep. I tried waking her up a couple of times, but had no success, until one young doctor came into her room. She happened to like this doctor when she met him in January, and until this day she can recall his name and his demeanor. When I told her that this doctor walked in the room, out of a deep sleep, her eyes popped open and she let out a beautiful smile. This spoke volumes to me about the power of the human connection. Mary complied with what was being asked of her because she developed a rapport with this doctor. However, he remembered her as well and asked specifically to work on her case this week. So it is mutual admiration. I also met another team of doctors today, who I fell in love with. This team was from palliative care division. As Dr. Shad has educated me, palliative care doesn't mean end of life care. It can, but what it really means is holistic care. Care in which every aspect of the person and his/her life is taken into account. What a concept. This particular doctor sat down with Mary and I today, and he really wanted to get to know her, and by the time he was finished I asked him how on earth he manages to deal with the perspective of other medical professionals, who typically focus upon their one specialty or part of the body. We both laughed, and we came to the conclusion that holistic care is vital, because in understanding the whole person, you can also have a better perspective of the presenting problem. He and I were on the same page. As I was sitting with Mary today, she told me that I should have been a nurse. She feels that I have the skills necessary to perform this job. Since I deeply admire Mattie's nurses, I take this as a high compliment. But between Ann and I we had Mary covered today. Transitioning to a hospital is a major ordeal for anyone but especially for an older adult. Mary needed the support of managing all the doctors who came in to examine her, and the host of other things she was bombarded with. I always feel for those patients who are brought to a hospital and are asked to manage this daunting task alone.
Needless to say, I visited three hospitals today, and it has been a very full day. I continue to feel ill tonight, and I am hoping that sleep happens. Tomorrow morning, I will be heading to Mattie's upper school campus to their weekly chapel. Meredith, Tamra's daughter, is a senior and is going to say a few words to the school community about Mattie. So there is no way I would miss that opportunity. Tomorrow evening is our Foundation board meeting, so the meetings continue on for me this week. I appreciate so many of you who wrote to me to wish me luck today!
This evening, in the midst of writing the blog, my friend, Tanja, has been text messaging me back and forth. She is trying to come up with more natural ways to help my physical ailments. I appreciate her time researching different remedies, and most of all, in her last message, she stated the importance of taking care of myself because I am needed for so many different reasons by so many different people. I am not doing justice to her messages, but it means a lot to hear how she feels. It takes courage and also a willingness to be vulnerable when you tell someone how you truly feel.
I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen. Kristen remembers us each Tuesday, and clearly you can see that we have a special connection with her. Kristen wrote, "It was nearly one year ago that we collected in Georgetown to celebrate Mattie's beautiful life. So much has happened in the last year that has changed the world...and Mattie is one of those things. The ripple effect of his life and his courageous fight has continued to touch lives far removed from the hospital, his school, and this city. States and entire countries away, Mattie is making his cause known...even today, on this Tuesday. Thinking of you on this Tuesday and everyday. Enjoy your trip out west! "
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