Tonight's photo was taken in December of 2003. As some of my faithful readers may remember, we took Mattie to Lowe's to try to take his picture by the Christmas trees and poinsettias. I was trying to capture a photo to put on our family Christmas card that year and because Mattie wouldn't sit still for a picture, I figured the next best thing was to put him in a moving shopping cart, try to distract him, and then snap a picture. As you can see from this picture, Mattie was absorbed by all the lights and Christmas things all around him. Though this WAS NOT the picture I placed on the front of our card, there was something quite sweet and innocent about this photo. It seemed to capture Mattie's intrigue and fascination with the world around him.
Quote of the day: To touch a sore is to renew one's grief. ~ Terence (Ancient Roman Playwright)
It is funny how my day can start out relatively fine and by the end of the day, my world seems to be crashing down all around me. It is midnight now, and I am just sitting down to write today's blog. I began the day by walking over three miles with Ann. The walking routine is very important to me. I recall last year at our first Foundation Walk, I walked around the track with Maya. Maya is Mattie's age and the only friend he made at Georgetown who was his age. I noticed after I did one lap around the track with Maya, I felt like I was going to collapse. Everything hurt and I was out of breath. That was a realization to me that physically I had lost a lot during Mattie's battle with cancer. After all, living in a hospital for over a year caused me to have a rather sedentary lifestyle and that along with managing day after day with intense stress and VERY little sleep produced a very toxic physical combination. So this year, I have made a conscious effort to regain strength and stamina.
Peter and I had the opportunity to have lunch today with our friend and fellow board member, Tamra. We chatted with Tamra about the legislative direction the Foundation is taking and she shared many valuable insights with us on next steps and other connections. Tamra was commenting to us on how we are making a difference, and her comments struck me emotionally. Which then triggered my memory to the last time I saw Tamra at the Hospital. She came to bring me hot tea the day before Mattie died. Tamra entered the room, could see how horrific the scene was, gave me the tea, hugged me, and turned right around. I remember that day vividly because NO words were needed and NO words could have possibly been of comfort. She sensed that and her sensitivity toward me on September 7, 2009, will not be forgotten.
As most of my readers know, Tuesdays are challenging days for me. Today marks the 78th week Mattie has been gone from our lives. Therefore, returning to Georgetown Hospital for a parent advisory board meeting today was NOT at all easy. However, all board meetings are on a Tuesday.
Tonight's meeting lasted four and a half hours. It was a joint meeting between two parent advisory boards, the pediatric board and the Neonatal Intensive Care board. I had the chance tonight to tell both boards about the Mattie Miracle Cancer Foundation walk on May 22, and I was so pleased to see how receptive the parent members were and how they want to help promote our event. I explained that the walk proceeds this year would be given to the childlife department at Georgetown University Hospital to hire a part time specialist to assist children and their families during scan and procedure days. Days in which a family learns if their child's cancer treatment is working or whether the cancer has progressed. The parents see the great need for such psychosocial support, and I was happy to hear their feedback! Peter and I feel very passionate about directing funds to childlife, knowing that Linda (Mattie's childlife specialist) will effectively utilize these funds to help hundreds of children psychosocially each and every day.
As the evening wore on however, I became disillusioned over the discussion of family centered care. This seems to be the popular language or lingo used by many hospitals now. Basically this is what family centered care means (according to the Institute for Patient and Family Centered Care).........
Patient- and family-centered care is an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families. It redefines the relationships in health care.
Patient- and family-centered practitioners recognize the vital role that families play in ensuring the health and well-being of infants, children, adolescents, and family members of all ages. They acknowledge that emotional, social, and developmental support are integral components of health care. They promote the health and well-being of individuals and families and restore dignity and control to them.
Patient- and family-centered care is an approach to health care that shapes policies, programs, facility design, and staff day-to-day interactions. It leads to better health outcomes and wiser allocation of resources, and greater patient and family satisfaction.
In theory I think hospitals like to throw around this terminology but having lived within the hospital setting for over a year, I am very very certain that most medical doctors do not embrace this concept. They may say they do in theory, but their actions speak volumes. Of course, Mattie had several doctors who I would not lump into this mix, they understood and valued our participation in Mattie's care and also knew the impact his cancer was having on us. I wish I could say that was true about medical doctors across the board but it simply isn't. I have been invited on May 20 (two days before the Foundation Walk) to speak to hundreds of doctors at their medical ground rounds to testify about the psychosocial nature of cancer care, to share Mattie's story, and to provide these doctors with take a ways about what they could do differently as they interact with pediatric patients and their families. On one hand this is an exciting opportunity and on the other hand I feel that the training of physicians is in need of a huge overhaul. Which makes me wonder what my testimonial will actually accomplish. Who knows, maybe tomorrow I will feel differently about this.
I had the opportunity to talk with two other women tonight who lost their children as well. In a way, we are like the bereavement trio, since we are always advocating for better end of life care for children at the hospital. I listened to their stories tonight about how their children died. Needless to say, as I was leaving the hospital at 10:30pm, I was on emotional overload. In fact, as I was walking down the desolate hallway at the Hospital, I had a flashback on living in the hospital and traveling these hallways at all hours of the day with Mattie. By the time I got to my car in the parking lot, I felt very unhappy and that feeling just continued as I got home.
As I entered my home tonight through our deck, I could hear Mattie's wind chimes (a birthday present Mattie gave me!) blowing in the wind. In a way, despite feeling alone in my thoughts and feelings, he was trying to send a message to me that I wasn't really alone. That he was here right along side me, that he understood my sadness, and wanted me to know he loved me. So Mattie's chimes tonight not only helped me remember him, but they served as a reminder of our love for each other. Mattie never liked to see me upset and just as I advocated for him, he in his own cute way would advocate for me. So in typical Mattie fashion he made his presence known tonight.
I would like to end tonight's posting with two messages. The first message is from our friend and Mattie's oncologist. A woman who truly gets family centered care. Kristen wrote, "Just thinking of you guys tonight. I hope you are well or at least as well as can be. Let's plan some time for a walk in the next month. Thinking of you this Tuesday and everyday."
The second message is from my friend and colleague, Nancy. Nancy wrote, "Mom's piece was perfect in the sense she conveyed each of your experiences so clearly and with much feeling. The struggle with loss is a daunting challenge to living a disrupted life. The loss of a child is never easily explained and definitely not understood by us. I think this is the point where emotion and the impact of the loss is the only explanation we have left. Each time I read a piece like Mom's, I want to wrap my grandchildren in my arms and give them an extra squeeze. Peter and you clearly loved being Mattie's Mom and Dad! It comes through in all you did for him healthy and during his battle with death. You do him great honor now with the Foundation and the blog. Your story continues to touch all who have become familiar with it. I know that today is where you try to make sense of your loss. My thoughts are with you today as you handle another Tuesday without Mattie."
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