Wednesday, June 20, 2012Tonight's picture was taken in May of 2006 at Sesame Street Place. Mattie and Peter went down a huge water tubing slide, and Mattie loved it. This was the same child who began life HATING slides and having great fear of water. By age four, all that changed, and Mattie seemed like a different kid who loved excitement and the thrill of a ride. To me this speaks volumes about the importance of early interventions and the constant support and encouragement Peter and I provided Mattie as we was building confidence and developing his physical skills.
Quote of the day: He that will not reflect is a ruined man. ~ Asian Proverb
This afternoon, Peter and I ventured to Capitol Hill in EXTREME heat and visited Rep. Mike McCaul's office. Rep. McCaul is one of the congressional members who helped us host our Psychosocial Symposium on the Hill in March. When you walk into the main reception area of Rep. McCaul's office this is what you see! The Mattie Miracle Outstanding Legislative Award prominently displayed (which we gave Rep. McCaul at the symposium). We were thrilled to see this, and if Mattie could see his name on Capitol Hill, he would have gotten a kick out of this. Peter and I had a very good meeting with Andy, Rep. McCaul's legislative aide, and we are working on our legislative strategy for this coming year.
The beauty and complexity of lobbying on the Hill for mental health issues, are not foreign to me. As a licensed mental health provider, I had numerous opportunities (prior to Mattie's cancer) to lobby on the Hill, and as such, I know that mental health issues are really the step child of the health care profession. Our profession is dictated by medicine and health insurance companies, both of which do not always understand or appreciate the complexities of the brain, emotions, and the impact of health and the environment on the psychological well being of an individual. Being armed with this knowledge, enables me to understand that what Mattie Miracle is lobbying for is beyond challenging. Because we are not only fighting a health care mindset which is challenged to support mental health services, but now we are trying to advocate for a VERY underserved population in our mental health community.... children with cancer. Nonetheless, being pleasantly persistent, telling our story, and bringing together great psychosocial research minds from around the Country gives credence to our advocacy. It is an uphill battle to get the attention of policy makers, who are very focused on what they perceive as more tangible help to the cancer battle (drugs to fight childhood cancer). Yet as I said today, in 20 years, one new drug has been FDA approved for childhood cancer, and therefore history seems to indicate that new drugs are NOT coming to us any time soon. In the mean time, we have families and children trying to manage and cope with real world psychological issues from the treatment that last into survivorship or that impact bereaved families. Such issues are depression, fear, anxiety, PTSD, self-esteem, substance abuse, eating disorders, and isolation just to name a few. Whether new drugs are found today or decades from now, the prevalance of psychosocial cancer issues will remain ever present. These issues if left uncheck and not handled effectively will result in a large drain to our health care system not to mention will affect the overall quality of a person and family's life.
As I said to Andy today, passing legislation to give drug companies incentives to create drugs to target childhood cancer is fine, but ultimately this won't help people like Peter or I, and the thousands of others parents who are actively fighting the battle now, or who have lost the battle and are trying to find a purpose for living once their child is gone. The funny part, is attending a lobbying session with Peter and I, is like taking a step back to the 1960s TV show, Star Trek. Peter is Captain Kirk, level headed, decisive, and can streamline conversations and topics, and I am truly like Dr. McCoy ("Bones"). I am driven by emotions and passion for the subject, so I can easily get animated about a topic and by the time I finish with you, it is hard to fight what I am saying, because you can feel the energy I have behind it. So in that sense, we are the perfect lobbying team, in other words we are.... good cop, bad cop!
In last night's posting I shared with you 12 of our track posters that we had on display at this year's Foundation Walk. These posters in my opinion made this event a very special and unique experience. Why? Because the posters captured the words, feelings, thoughts, and pictures of those battling and surviving childhood cancer. For it is the children and families living with childhood cancer that we walk to ultimately support. The posters served as a subtle reminder of our mission, which is crucial from my perspective as a Foundation leader. I feel responsible for bringing awareness to this issue and giving families an outlet to be heard and seen. As a result, the posters helped to make this a Walk with a purpose!
As you can see, along the track, walkers had to pass by these posters. 
At some point, along the Walk journey, attendees stopped and read the posters. 
It is wonderful to see people of all ages engaged in reading the posters.
The little girl in this picture is Bethie. This is my friend, Junko's daughter. Bethie was checking out and absorbing the posters along her walk.
More poster observers! 
These two girls stopped to read the poem about family posted on the Johnson Family poster.
The posters attracted people of all ages and genders. As you can see these two boys paired up to check out the posters and clearly were chatting about what they were seeing. I sense that based on the fact that Ryan was pointing to something on the poster. 
A close up of Andrew and Ryan examining a track poster.
A new activity addition to the walk this year was a 30 minute Zumba class taught by my instructor, Jenny. Jenny's daughter and Mattie were in the same kindergarten class together, so we have known each other for a while. It was Jenny's idea to host a free class at the Walk, and I loved the idea. Several Walk attendees emailed me after the event was over to let me know that they felt great community spirit while watching the zumba session!
I participated in the zumba session at the Walk and behind me stood several football players from the St. Stephen's and St. Agnes School team. These guys were real sports and very good natured. After all, they did not have to participate and stay for the entire 30 minute session. However, I have to tell you that their commentary was a RIOT! As football players they are used to exercising, getting into condition, moving around, and playing hard. But zumba requires all sorts of skills and stamina, and after about 5 minutes, they were getting tired. I have to tell you, they truly cracked me up and listening to them throughout the session made the whole experience FUN! It also made me see that I am getting great weekly exercise, because if they were winded, and I was feeling fine, then this is a good sign to me. 
We also were lucky enough to have several members of the St. Stephen's and St. Agnes School's Service Learning Club, not only volunteer at our event, but participate in the zumba session. 
Our photographers captured my mom, me, and Maya doing zumba together. As my faithful readers know, Maya was a close buddy of Mattie's at the Hospital. In fact, Maya was the only child close to Mattie's age who he would associate with at the Hospital. So Maya was and will always be special to us. Maya has attended EVERY single Foundation walk, and as you can see she was wearing her t-shirt from last year's Walk!
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