Tonight's picture was taken in December of 2006. Several years in a row, we met my parents in Deerfield Beach, FL after Christmas to spend time together. Mattie loved going to Florida in December because he could wear shorts in the winter, play on the beach, and also visit one of his favorite places, Butterfly World. Butterfly World is a place I remember fondly because it is a magical experience to walk amongst butterflies. Butterfly World is an extensive butterfly farm and research center which was started by an electrical engineer who retired to Florida and opened the doors of this incredible sanctuary in 1988. I included a link if you want to learn more http://www.butterflyworld.com/start.html . However, as soon as you walk from the parking lot to the entrance of the sanctuary you are transported to another world in a way. A world of flowers, wind chimes, and beautiful classical music. You can hear and see these things right by the sign Mattie and I were standing at. As you can see, Mattie was in his typical Mattie position. Our cheeks were touching each other and his arms were wrapped around my neck. As you look at this picture, I wonder what you see first, or what captures your attention? When I see this picture, I am not necessarily seeing anything but instead am recalling the feeling, the feeling of that very moment in time.
Quote of the day: There are some who bring a light so great to the world that even after they are gone the light remains. ~ A quote featured on the plaque Debbi (Mattie's sedation nurse angel) gave us this evening at dinner!
Today was a day I RARELY experience. In fact, it is so rare for me that I am even afraid to write about it. Why? Because for the most part my days since Mattie's death are just one big amorphous blob, without direction and purpose. Today was different though, it was a productive day and a day I felt as if I actually accomplished something. I began my day by contacting the director of the Hospital Schooling Program at the Children's Hospital of Philadelphia (CHOP). As a new member of the pediatric parent advisory board at the Georgetown University Hospital, I agreed to contact CHOP to learn more about the educational programs they provide for chronically ill children at the Hospital. It is the hope that such a program could be established at Georgetown. At CHOP, the Hospital Schooling Program is run by the school district of Philadelphia, however the district gives the Hospital the autonomy to hire their own teachers and to regulate their program internally. So in essence the teachers are employees of the Hospital and as such have access to patient charts and attend psychosocial meetings. Making them integral parts of a child's holistic treatment team. I had a very productive 45 minute conversation with the program's director, and learned how CHOP's program was started, what some of the challenges are of running such a program, and how the Hospital teaching staff works in conjunction with the patients' teachers from their school districts, schools from all across the Country. It is of interest that 40 to 60 percent of children at CHOP are NOT from Philadelphia, and yet these Hospital teachers find a way to integrate all the necessary requirements within the curricula!
I have mixed feelings about a Hospital School Program. Initially when Mattie got sick, I was upset that he would miss a year of school (goodness if that was only the worst part of all of this!), and I felt that I needed to find a way to keep his mind stimulated. So perhaps a Hospital School Program would have been a God sent back then for us. But on reflection, school was NEVER an option for Mattie during his year's battle with cancer. Mattie was too sick, too fatigued, and more over the psychological impact of chemo and surgeries made formal instruction impossible. At first I was upset by this, but I let that feeling go quickly. What Mattie wasn't learning in a classroom, he was gaining in other ways. Cancer can make you grow up quickly, and didactic learning under those circumstances would not have been the right choice for Mattie. He needed some freedom to be himself, to create, to have SOME control over his day, and to be silly. Throughout the treatment process, Mattie became an advocate. If he saw something that did not make sense, he made sure his doctors and nurses knew about it. Being an advocate is NOT something you learn in a classroom, being an advocate is something you learn through life experiences. The hospital itself was ONE big life experience for us.
On the other hand, I value education, and I do think based on one's treatment regimen and length of time in the hospital, that a Hospital School Program is imperative. The beauty of such a program is that it isn't mandatory, and families can opt into it or out of it. Hours, days, and months spent in a hospital can be confining, upsetting, and boring. An educational program could certainly be enriching, stimulating, and help children connect with one another within the pediatric units. So there are definite benefits to hospital schooling as well.
Later in the day, I ran some chores, and then drove to Peter's workplace and picked him up to attend our first strategy session with Brett Thompson. Many of my readers know Brett as the co-founder of the Pork Barrel BBQ Restaurant in Del Ray, VA. In fact, those of you who attended last year's Foundation Walk, may recall that one of the raffle prizes was a case of Pork Barrel's famous BBQ sauce. Brett supported the Walk last year, and he did not even know us. He just felt compelled to support a worthy cause. This should give you some indication of his depth and character! Keep in mind that Brett, prior to joining Mercury, was a legislative director within the US Senate by day and in the evening partnered with a colleague to develop an amazing BBQ sauce, a sauce they named, "Pork Barrel," after watching many late night senate debates on pork barrel spending! Their goal was to bring quality BBQ to the Washington, DC area, and they have succeeded! In fact, I suspect that if Brett takes something on, it is simply destined to succeed. Which is why after meeting him today, I felt very empowered.
When Peter and I met Brett two weeks ago for coffee, he surprised us once again with his generosity. Brett is an entrepreneur by evening, but a high powered lobbyist by day. In fact, he is a Senior Vice President at Mercury, which is a high stakes public strategy firm in Washington, DC. I included a link to Mercury here so you can learn more about it: http://www.mercurypublicaffairs.com/
Brett has officially signed us on as one of his clients, to help us develop a legislative and advocacy strategy. A strategy that will also involve scheduling monthly Hill visits, accompanying us on these visits, coaching us on talking points, and providing us with a solid platform on which we can make a stand about pediatric cancer. Brett introduced us to several of his colleagues, who I listed below. Peter and I also met Congressman Sandlin, a partner at Mercury, who said that his staff would not only offer us the full extent of their resources, but that they would be happy to do so because they all stand behind and support our cause. To some extent, meeting these fine individuals today, who are compelled by our story and who want to stand up to the inequalities of pediatric cancer care, research, and treatment, is an overwhelming feeling! I never thought for the life of me that our story, a story I write about each day, would land us in front of a person like Brett Thompson. I included a link below to all the Mercury people we met with today.
http://www.mercurypublicaffairs.com/staff-member/brett-thompson
Congressman Max Sandlin, a Partner at Mercury
http://www.mercurypublicaffairs.com/staff-member/hon-max-sandlin
Sarah Martin, a Director at Mercury
Jesse Appleton, a Vice President at Mercury
As our meeting came to a conclusion, Brett told Peter and I that he was impressed with us. He said that from his experience, he has never seen a Foundation, created by two parents who lost a child, develop in such a solid, organized, and thoughtful manner. I told Brett that I took that as a high compliment coming from him, and I also said that I appreciated this feedback, because sometimes I can get disillusioned with myself, my lack of energy, and feeling stymied by grief. Brett gave me an objective viewpoint of our Foundation, and from that reality check alone, today's visit was a gift. I am not sure why things happen anymore, but I do know that our connection with Brett hasn't occurred by happenstance. Knowing a little about Brett, I don't think he takes on things that he isn't passionate about or that he doesn't see potential in, so the fact that he has honed into our Foundation and Mattie's story provides me with an indescribable feeling.
We had a wonderful time connecting with Debbi, catching up on each other's lives, and also talking about the various ways cancer has changed and impacted our lives. Debbi has always been a great listener and an amazingly support to NOT just me, but Peter too. Debbi is aware of how important relationships in our lives have been permanently severed after cancer, which may seem hard to understand as a reader, especially since I am not elaborating on them here. But when you have experienced a trauma and lost your only child from such an experience, your ability to handle certain behaviors and treatment from others becomes intolerable. In fact, unlike my previous feelings (before Mattie developed cancer) on such issues, I now believe that just like a physical disease, certain relationships are also unhealthy and therefore the only way to handle them (assuming that you have tried other less drastic options FIRST) is to cut them out.
So as I sign off tonight, I can't help but reflect on what a powerfully supportive and productive day it was! I don't have moments like this often, so today I definitely took notice.
1 comment:
Lazarex does more than help cancer patients from all walks of life to participate in FDA-approved clinical trials. We also have begun honoring some of our patients by showing support for the things that gave their lives meaning.
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