Thursday, May 1, 2014

Thursday, May 1, 2014

Tonight's picture was taken on July 20, 2009. At this point in time we did not know Mattie's cancer was terminal. Literally within weeks we were going to find out that news. But ignorance was bliss and despite being in pain and not eating much, we all kept pushing Mattie in hopes that he would bounce back and make progress with his rehabilitation process. The notion that we thought Mattie was going to walk again and attend school in the Fall of 2009 shows just how absurd we all were! I mean his whole care team, not just us.... his parents! As you can see, Mattie put a lot of effort into his physical therapy sessions. The lady in purple sitting with her back to us, was Anna, Mattie's physical therapist. Anna was an amazing therapist and did wonders for Mattie and me! Sitting next to Mattie was a physical therapy intern. However, when you stop to think about Mattie's level of disease progression and intense bone and organ pain, it was remarkable that he had the energy to do what I captured here in this photo. 

Quote of the day: It is not what we get. But who we become, what we contribute… that gives meaning to our lives. ~ Tony Robbins

Today was an amazing day for the Foundation filled with incredible feedback. Our keynote presentation went splendidly. Sometimes it is hard to know whether you have delivered upon what an organization has asked of you, but in this particular case, I can safely say we did this and then some! It was clear the audience was thrilled to hear about our national vision of a psychosocial standard of care and in fact they were THANKING us! They feel that such a standard will help to justify their jobs and their positions within a hospital setting. 

The audience was comprised of over 110 individuals, representing a range of professions such as hospital education specialists, child life specialists, psychologists, nurses, and social workers. After our presentation, Peter and I attended the rest of today's conference and participated in five sessions and also presented a scientific poster of our standards project during lunch time. We networked with many wonderful professionals and even met a key player at the Ohio Department of Health, who wants us to come back to Ohio to participate in her June meeting. Apparently Ohio is opening up their state plan to include psychosocial care and wants to consult with us on how we have structured our care project. We were thrilled to hear this, not to mention to be offered other national speaking engagements by other organizations. 

I had the wonderful opportunity today to watch Peter present with me. As I told him today, he was "on fire!" Meaning he did a great job! Typically Peter and I tag team as we talk about the Foundation. However, with this particular presentation, the organization wanted a component of our presentation to be strategic and business in nature. They wanted to know how specifically one goes about developing a strategy to create a national plan/project. This is where Peter's consulting and MBA skills came shining through. I can easily talk about the Foundation, its history, and our standard of care project, but Peter is MUCH better at talking about next steps and the vision as to where this plan is going. Which is why we present so well together. You need both of our visions for the Foundation to be successful and I think that came shining through today. In addition, our goal was to also bring Mattie alive for the audience and to let them know we have LIVED the cancer experience and this experience guides our Foundation's goals, mission, and objectives!

At times Peter and I landed up talking with LOTS of different people. We divided and conquered. Peter shared a story with me about a woman who approached him and told him that she lost her son to cancer. After his death, she decided to become a hospital educator, because she felt compelled to DO something, and to provide services that were lacking in her son's care! Both she and Peter concluded that they both do what they do in order to stay connected to their sons. Both agreed it was a labor of love and weren't doing it for the MONEY! Naturally because in our case, Peter and I take in NO salary! But Peter's observation was stellar...... the Foundation work gives him/me something to continue to grow and nurture. A proxy I suppose for Mattie. 

Peter snapped a photo of me by our scientific poster. This poster was developed by our core research team for a presentation that was given in Texas in October of 2013. This poster is a beautiful visual summary of our entire National Standard of Care project. Starting with Mattie Miracle's vision and Psychosocial Symposium on Capitol Hill in 2012 to the present activities! 


This evening we have been invited out with the conference planning board, and we look forward to having the opportunity to get to know these wonderful professionals better! I am signing off. Tomorrow we return to DC! A whirlwind trip, but a vital one for the Foundation.