Thursday, May 12, 2011 AND Friday, May 13, 2011NOTE: Google Blogger, which hosts Mattie's blog, had technical issues yesterday. The service was shut down for at least 12 hours, which is why I was unable to post last night.
Tonight's picture was taken in August of 2007. Mattie and Peter ventured on a rowboat together on the Potomac River. As you can see Mattie caught a catfish while fishing, and by his smile you can tell he was proud of his catch. Peter snapped a quick picture, and then as they always did, they threw the fish right back in the water. Peter and Mattie liked their time together on the water, and on occasion, I would join them. While along with them, Mattie would try to instruct me on how to hold a fishing pole and he would tell me about his special technique for catching fish. He took great pleasure in knowing something in which I had no clue about!
Quote of the day: You incorporate the loss into the inner landscape of who you are. ~ unknown
It was another busy day filled with Walk tasks to complete. Thursday afternoon, I met up with Peter and we both headed to Capitol Hill to visit with Ray Thorn, Health Legislative Assistant, in Rep. Chris Van Hollen's (D-MD) office and Laura Bunten, Health Legislative Assistant, in Rep. Mike McCaul's (R-TX) office.
Peter and I met Ray Thorn in March of 2010 (only six months after Mattie died) when we attended CureSearch's Advocacy Day on the Hill. Peter and I, along with at least 12 other people had a meeting that day with Ray to discuss CureSearch's advocacy agenda. In the meeting, we all went around and introduced ourselves to Ray. As I was talking, I could feel that Ray was really listening to what I was saying and felt deeply hurt that Peter and I had lost Mattie so tragically. He also commended us for visiting the Hill and trying to make a difference, only six months after Mattie died. I immediately liked Ray when we met him, despite being in a room full of other parents telling their story, I felt like he was able to hear all of our stories and appreciate each message. Which isn't easy to do with such a big group!
When Peter and I began working with Brett Thompson (Managing Director with Mercury, a high-stakes public strategy firm who has taken us on as a pro-bono client) we suggested to Brett that we would like to go back and visit with Ray Thorn. So in February of 2011, we met Ray for a second time. Ray remembered meeting Peter and I almost 11 months prior! When we told Ray the reason for our visit and the importance of psychosocial support for children and their families with cancer, he got the relevance and need immediately.
For the last four months we have been working closely with Ray, and thanks to the wonderful guidance of Brett Thompson, on May 10, 2011, a House Resolution was introduced that we helped to draft. The resolution is a FIRST of its kind that specifically addresses the need to raise awareness, improve education, and encourage research and treatment of the psychosocial needs of children, adolescents, and young adults diagnosed with a childhood cancer and their families.
We had the pleasure today to visit with Ray and with Laura Bunten and to express our great appreciation for their time, skills, and efforts. Ray really helped champion our cause and has faith in our Foundation's mission and in us. Peter and I are both saddened that after eight years in Rep. Van Hollen's office, Ray is leaving. Tomorrow is his last day! I am happy for Ray and for the opportunities ahead of him, but from our perspective the connection we made with him was very special and we greatly appreciate the fact that he worked so hard to get this Resolution introduced by his boss before he left his position.
Peter and I then went to visit with Laura Bunten in Rep. McCaul's office. Rep. McCaul is an original co-signer of the psychosocial Resolution and his office's support is deeply appreciated by us. To our amazement, we learned that Laura too is leaving her position in June to attend law school. So these are big changes for us and in essence the pediatric cancer advocacy world.
I included three links below that maybe of interest to you. The first link is to a press release regarding the Resolution. The second link is an overview of Resolution (H.Res 262), and the third link is the full text of the Resolution. H.Res 262 has been introduced in the House and it certainly has a way to travel before it gets passed, but it is a major first step that acknowledges the importance of understanding, treating, and researching the psychological and social issues of childhood cancer! Peter and I are very grateful to Ray and Laura, and our Mercury team.... Thanks Brett and Greg!
Press Release: http://www.i-newswire.com/mattie-miracle-praises-congressmen/108066
Overview of the Resolution: http://www.govtrack.us/congress/bill.xpd?bill=hr112-262
Full text of the Resolution: http://www.govtrack.us/congress/billtext.xpd?bill=hr112-262
I would like to end tonight's posting with a message from my friend and colleague. Nancy wrote, "Bravo!!!!!!!!!! The work that you are doing is so valuable and necessary. Mattie's life and death has created the energy needed to accomplish this most humane circle of care and support. Luda and others are committed to the Foundation because of the excellent preparation by Peter and you. As you must have done in your classroom, you give 120%. You do set high standards for yourself, sometimes, that is a concern as you judge yourself too harshly. It is these high standards that are bringing such important results. Mattie has given you some very special friends. He has some very special friends. When I read about Zachary, Campbell, and Ann's Abbie, all of them exhibit such poise and consideration beyond their years. It is a way to see the world as positive even when some results are so painful and devastating. I look forward to reading tonight's blog to learn of your news. I hope that you are feeling a bit better physically. I know that you viewed the tightening of your speech for next week as daunting. What I also know is you will capture the essence of what is needed in whatever time you have been allowed. You will be able to communicate to the doctors what is needed for their patients during difficult procedures and circumstances. I am so proud of you."
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