Wednesday, July 6, 2011Tonight's picture was taken in May of 2007, in our front hallway. Mattie was my laundry buddy. From the time he was a baby, he got used to doing laundry with me. For him it was an adventure, traversing our hallways to the laundry room. When he was a baby carrying him and balancing the laundry was a riot. As he got older and could walk, it got easier, but he always found an interesting way to join me on this chore. He either would jump into the laundry cart (as you can see here) or would ride his bicycle through the halls with me. Either case, "super Mattie" was always by my side. Many of the people in our laundry room got used to seeing Mattie. He was entertaining, engaging, and helpful to them! I recall the first year after Mattie died, it was hard to go down to the laundry room without him and most definitely hard not to see Mattie's little clothes being washed. Not that it is easier now, but I have gotten used to the absence of his clothes, but certainly not the absence of his presence.
Quote of the day: I would say to those who mourn…look upon each day that comes as a challenge, as a test of courage. The pain will come in waves, some days worse than others, for no apparent reason. Accept the pain. Do not suppress it. Never attempt to hide grief. ~ Daphne du Maurier
Today Mattie Miracle visited Capitol Hill! As our readers know, on May 10, 2011, Rep. Chris Van Hollen (D-MD) and Rep. Mike McCaul (R-TX) introduced the psychosocial Resolution (HR 262) that we crafted together (http://www.govtrack.us/congress/billtext.xpd?bill=hr112-262). We consider these Congressman pioneers in a way, because they are the first legislators to advocate for supporting efforts 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. Since their introduction of the Resolution, around ten other Representatives have also come aboard to co-sponsor the bill. The Resolution continues to build support and momentum and the goal of today's visit was two fold. First, we wanted to visit the offices of Representatives Van Hollen and McCaul to thank them and to connect with the new health legislative assistants who we will be working with.
Peter and I said good-bye to Ray Thorn in Van Hollen's Office and Laura Bunten in McCaul's office this spring. Both of these Health Legislative Assistants will be missed and we very much appreciated their efforts to listen to our stories and our concerns and to proactively address them with their bosses and within months help to introduce a House Resolution. Today was our first introduction to meeting the new Health Legislative Assistants, Erika Appel in Van Hollen's office and Andy Taylor in McCaul's office. Unfortunately I did not take pictures of this wonderful and productive meeting. But toward the end of that meeting, we actually had the opportunity to meet with Rep. Van Hollen personally, to shake his hand, and to thank him for his dedication to pediatric cancer. Seemed like the perfect camera moment, for the person who is obsessed with pictures as I am, but some how it just did not seem like the appropriate thing to do. Nonetheless, as we were leaving, Rep. Van Hollen addressed Erika and Andy (who met us in Van Hollen's office) and encouraged them to work hard to get this Resolution passed.
The second reason for our trip to the Hill was to meet with staffers in Senate offices to try to bring further awareness of the psychosocial needs of children with cancer to the Senate and to work on drafting a similar Resolution there. Some of my readers may recall that I went to the Hill in March to have our first set of Senate meetings. Today, we met with two senate staffers. Accompanying us on these meetings was Greg Stanford, a manager at Mercury (the high stakes public strategy firm working with Mattie Miracle). Peter came with me to one of the meetings, and then I ventured to the second one with Greg.
Pictured from left to right: Laura Goodspeed, Shae Fitzpatrick, Vicki, and PeterOur first visit was to Senator Scott Brown's (R-MA) office. We met with Shae Fitzpatrick and Laura Goodspeed (Health Legislative Aides). It was nice to visit an office that represents the State where Peter was born and raised. Shae (who is the lady standing right next to me) is delightful and a real cancer advocate. Unfortunately Shae is leaving the Hill and will be attending Boston College Law School in the Fall. Laura will be replacing Shae and we look forward to our further connections with this office. Needless to say, Peter loved the Boston memorabilia hanging all over the office, from Red Sox photos to lighthouse prints.
The second visit was to Senator Mary Landrieu's (D-LA) office. I met with Peter Gwynn-Sackson (Health Legislative Assistant) and we had a good conversation. Every staffer we spoke to today was receptive to our story and seemed genuinely interested in our cause.
Hill visits can be taxing though, especially because we are telling our story and trying to advocate for an issue that took the life of Mattie. As I was riding home on the Metro, my migraine headache caused me to develop motion sickness. So by the time I got home, I was on overload. So I spent a good portion of the afternoon in a dark and cool room, with the hopes that this migraine will end sometime soon.
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