Thursday, March 17, 2011

Thursday, March 17, 2011

Tonight's picture was taken on St. Patrick's Day in 2009. It is hard to believe that two St. Patrick's Days have passed us by without Mattie. It just seems impossible to understand how this is possible. Team Mattie gave him these wonderful shamrock things, and on his way out the door to clinic that day, he wanted to get dressed up for the occasion. This is one of my favorite pictures of Mattie, because despite all he was going through, he still wanted to have fun and be a kid. Which from my perspective was extraordinary, considering how cancer impacted Mattie physically and psychologically.

Quote of the day: In this world, whose family is there without blemish? Who is free from sickness and grief? Who is forever happy? ~  Chanakya



I spent over six hours today on Capitol Hill. This was my very first time going to the Hill alone. That may not sound like a big deal, but for someone who is directionally challenged like myself this is a major feat! I can get lost very easily, and I find the labyrinths or maze like hallways in many of the buildings on the House side of Congress very disorienting. With a map in hand I managed!

CureSearch had an opening program today at the Capitol Visitor Center. The line to get into the building was daunting, since there are extensive security procedures you have to follow to gain admittance. Because it took me a significant amount of time to enter the building, I missed the first several minutes of the opening program. As I entered the auditorium, I could see and hear that Rep. Chris Van Hollen (D-MD) was speaking to the crowd about THE MATTIE MIRACLE CANCER FOUNDATION and his work with us to promote the psychosocial needs of children with cancer and their families. At first I couldn't believe what I was hearing. I had never expected Rep. Van Hollen to be acknowledging us, but in that moment of time, I was happy in thinking that perhaps Peter and I are making a difference.

I met with two Senate staffers and two House staffers. So literally I was crossing all over the Capitol grounds. On my visit to Senator Mark Warner and Senator Jim Webb's offices, I had around 20 other parents and children with me. It is challenging to advocate for an issue with so many families. Mainly because we all have a story to tell and it is hard to balance these stories and communicate our "ask" effectively. However, despite our sheer numbers, we did make the process work. I have learned over the years (when advocating for mental health issues on the Hill), that it is important to know as much about the issue and the facts as possible before meeting with a staffer. They ask intelligent questions, and to have a meaningful dialogue, it is important to be up to speed on the issues. So last night to prepare for today, I read up on each of the four issues and created a one page cheat sheet of facts on all four issues for myself. Needless to say this fact sheet came in handy today.

In the process of my visit, I met two lovely moms, both of whom lost their daughters to rhabdomyosarcoma, cancer of the muscles. I find it fascinating that we all related and clung to each other. As I have said numerous times of this blog, losing a child to cancer, gives you admission into a special club. We understand pediatric cancer and we also understand in many ways how cancer destroyed our lives and that we no longer fit in or relate to the world around us. It is a hard feeling to describe, however, when I talk to a mom who has lost a child, words aren't needed. The feelings are simply understood and lived! I had the opportunity to have lunch with these ladies as well and we exchanged information with each other so that we can remain in touch.

At the opening program this morning, an 11 year old boy named Jack spoke. Jack is a brain cancer survivor and gave a testimonial of what it was like to live with cancer, how the treatments affected him, and how it impacted his family. He says he has to work harder at school because his treatments affected his cognitive abilities, and that he has to work harder at sports because he doesn't have the same physical stamina and strength as the other children. It was a very courageous and humbling presentation, and I find it very poignant hearing about pediatric cancer directly from a child.  

This is a picture taken with Senator Mark Warner's Health Legislative Assistant, Elizabeth Falcone. Elizabeth is wearing purple, has long brown hair, and is two people over from me on the left. As you can see, Elizabeth heard from many of us today. Everyone in the room was either a parent of a child who had cancer, or a pediatric cancer survivor.

I took this picture of the group, so I am not in it. We met with Maribel Ramos, Senator Jim Webb's Legislative Assistant. Maribel is the third person from the left, wearing brown.


After the visit to Senator Webb's office, I then met with Marcia Knutson, Rep. Jim Moran's Health Legislative Assistant, and Ray Thorn, Rep. Chris Van Hollen's Legislative Director, who is working closely with the Mattie Miracle Cancer Foundation.