Tuesday, December 6, 2011

Tuesday, December 6, 2011 -- Mattie died 117 weeks ago today.

Tonight's picture was taken in August of 2008. As you can see Mattie was walking our resident jack russell terrier, JJ. Mattie loved JJ. JJ and Mattie practically grew up together and they had a strong connection. Even until this day, JJ will come to our deck in the hopes of finding his buddy Mattie to play with. When Mattie died, JJ understood on some level that something wasn't right, and though he is a dog, JJ suffered from depression for several weeks. I am so happy Mattie had these happy times with JJ, and that Mattie got to experience the joys and love that only a dog can give a person. 


Quote of the day: Be kind, for everyone you meet is fighting a great battle. ~ Attributed to Philo of Alexandria

Tonight's quote seems appropriate for the experience I had today. I have lived in DC for over 16 years of my life and have never had the opportunity to go onto the National Institutes of Health campus. Which is huge! But today I was invited on campus to meet Dr. Lori Wiener. I have heard a great deal about Lori who is the coordinator of the pediatric psychosocial research program in the Pediatric Oncology Branch of the National Cancer Institute (one of the institutes at NIH). Fortunately Lori prepared me for my journey onto campus. The facility is huge, confusing, overwhelming, and very secure (you literally have to get out of your car for a car inspection, and you and everything you have with you goes through a metal detector). Needless to say, I got lost twice, but finally got on the right track to head to the Children's Inn (located on NIH's campus).

The Children's Inn is an amazing place. It is like walking into a hotel/resort/retreat center. Lori has been instrumental in the creation of the Inn and meeting her in person was a true honor. She clearly is a devoted researcher and clinician, who makes it her business to find ways to normalize a very unnatural experience for children and their families. As I sat in the Inn talking to Lori I realized just like tonight's quote aptly points out everyone around me is fighting a great battle. At the Inn it is most likely a battle with a physical or mental illness, and naturally when illness hits a family, the whole family unit is impacted greatly.

I want to share some information with you about Children's Inn, because I found it a very special place (if a child has to be sick, then having access to such a facility while away from home seems to be a God sent).

Children's Inn History............................ In the early 1980's, Dr. Philip Pizzo, then Chief of Pediatrics at the National Cancer Institute, noticed that families often congregated in the waiting room after treatment instead of returning to the isolation of hotel rooms. He envisioned a supportive place where families could stay without enduring the hardships and expense of living in a hotel. His vision was to build a convenient place with a home like environment where families could stay together for free while their children were undergoing treatment at the National Institutes of Health. The NIH donated two acres of land and Merck and Co., Inc. provided $3.7 million to build this "place like home." A dedicated group of congressional spouses formed The Friends of The Children's Inn and raised $2 million to furnish the residence. Dr. Pizzo, the congressional spouses, and several key individuals and organizations worked together to make this dream a reality and The Children's Inn at NIH opened its doors in June of 1990.

Info about Children's Inn....................The Children's Inn at NIH is "a place like home" for 59 families from across the country and around the world, seeking help for their children's medical conditions and hope for a cure. More than 1,400 families stay each year. More than 10,000 children and their families, from 50 states and over 80 countries, have stayed at the The Children's Inn since opening in 1990. All children participate in research studies at the National Institutes of Health - the nation's premier biomedical research center. The Inn continues to enhance programs and services for residents that fulfill our mission of keeping the family together during a child's illness and providing a healing environment through mutual support.  http://www.childrensinn.org/site/c.kkI1KiMXIvF/b.2001915/k.9D50/Home_Page_Content.htm

Though I came to NIH today to meet Lori and to learn about her work, she took a great interest in not only the Foundation, but in me as a parent who lost a child to cancer. She gave me many opportunities to share my perspective and feelings and it is my hope that I can participate in her bereavement study, because I think I have a great deal to say about the topic and talking about this is definitely therapeutic. I do not have these therapeutic outlets in my life, and as I told Lori, a part of the reason for this is also me. I am not the best therapeutic candidate at times. Lori did mention to me that parents who seem to survive such a traumatic loss do better when they have an outlet, particularly an outlet that gives them purpose and meaningful. As she quickly surmised the Foundation is this outlet for Peter and I. I enjoyed chatting with Lori. We talked for two hours and I know she will be instrumental to our psychosocial symposium which we are planning in March. It is through Lori that I became connected to several other researchers who will also be working with us on the symposium. So I take it one step at a time, and with each step learn more and make more wonderful and meaningful connections.

I would like to end tonight's posting with a message from my friend and colleague. Nancy wrote, "Lately, I find that I read the blog in stages, on Tuesdays and usually one day near the end of the week. You share so much that I find it easier to comprehend all that is going on with you, the Foundation, and those around you in a larger context. It helps me to appreciate just how involved you are with people and your impact on each of our lives. My writing today will work back from a few days ago when you first posted "The Genius Test." When I first looked at it, and realized that it was the kid's version, it reminded me how each of us has personal challenges. Because the first one didn't come easily to me,and I was going out that day, I never returned to try it. My first attempt was not a shining example for me and I knew that you would supply the answers the following day. In fact, I forgot about it until this morning. What I learned was there are times when each of us gives up too easily on a challenge because we might be afraid of failing or think it too difficult. As you know, in some areas of our work, this might be considered a "High Be Perfect" personality. Nothing or no one can do it all perfectly and this was a gentle reminder to keep trying, no matter what. Mattie is a wonderful example of this philosophy as he often 'pushed the envelope' and tried to be upbeat, and genuine during his treatment. He is and was a great mentor to all of us! I had missed the piece about HoyaDreams until today. What a great idea! I so appreciate when you share these pairings of groups with special interests as it reconfirms the goodness of others. The media usually focuses on the troubles and horrors of our day to day existence. Your blog reflects the interaction, impressions, and importance of reaching out and moving beyond one's own personal space. Thanks to the entire Brown family who is like the Energizer Bunny and keeps giving and giving in so many ways. Peter and you are going to be able to do a mini marathon soon. Walking 8 miles back and forth to the Verizon Center was great! As a Bostonian, maybe Peter could work a "miracle" and encourage the Boston Marathon to select Mattie Miracle Foundation as a partner. Wouldn't that be something? I LOVED Alan Alda's quote: "Your assumptions are your windows on the world. Scrub them off once in awhile, or the light won't come in." I attest to our belief as educators that learning is a life long practice. We learn much of our social behaviors before we are 5, and the rest changes as we enter the larger society. It is important for all of us to realize that few "truths" are static. As each of us reaches a new stage of life, we are able to scrub our windows. I want to pass this quote along, not to point a finger at some people, just to give some hope for changes that they have been contemplating and may be questioning whether they can throw away old beliefs in favor of new ones. I hope I'm not being judgmental here as I realize everyone needs to move at their own pace. Finally, I love visiting Mattie's tree with you, in virtual time. It doesn't surprise me that Mattie's tree has doubled in size. Although Mattie left this earth a little more than two years ago, his energy and spirit have more than doubled in many of our eyes. Look at what Peter and you and the Mattie Miracle Foundation have done in this brief time. I think your ornaments are a great addition to the tree and I believe that many at the school visit the tree and notice how it has changed. His tree is a TWINKLING TREE and will give off light and hope for many years to come. I believe it is Mattie's way of saying hello to everyone."