Wednesday, January 22, 2020

Wednesday, January 22, 2020

Tonight's picture was taken in January of 2005. Mattie was two and half years old and was invited to a birthday party. As you can see his trusty sippy cup was in tow. We never went any where without a sippy cup. Mainly because Mattie wasn't interested in water or juice, but milk. My joke was he was going to have the strongest bones around. I would never crossed my mind that Mattie could be diagnosed with bone cancer. Also note that this photo shows that Mattie ate some of the cake. Another rarity as Mattie wasn't into sweets. Yet if this had been a chocolate cake, the entire slice of cake would have been remaining on his plate. 




Quote of the day: The world as we have created it is a process of our thinking. It cannot be changed without changing our thinking. ~ Albert Einstein

In 2010, Mattie Miracle received a case of Pork Barrel BBQ sauce. Frankly when we received this big box, I wasn't sure what to do with it. I knew it was donated to us so I decided to feature it at the Foundation's raffle which was held at our FIRST WALK in May of 2010. After the event was over, I wrote a thank you note to the donor of the BBQ sauce. 

The donor was Brett Thompson, who was the co-founder of the company (https://www.dailysignal.com/2015/06/21/sick-of-political-pork-two-former-hill-staffers-launched-10-million-bbq-business/). Brett wrote back to me and suggested that we meet. I figured that he had an idea for a BBQ fundraiser. It never dawned on me that he was a lobbyist and wanted to work with us pro-bono. 

Brett learned about Mattie's story and the Foundation through a local business listserv. By the time we met with him, he was very familiar with this blog and our message resonated with him. So much so that he worked closely with us for several years. It is Brett who inspired me to branch out and host the FIRST ever psychosocial symposium for childhood cancer on Capitol Hill in 2012. Believe it or not, back then the discussion of psychosocial care and cancer were NOVEL! Most advocates were solely focused on the medicine and drug development. We had a new message, and as you know NEW and different aren't always celebrated. 

From this Symposium, we tasked the researchers in attendance to create an evidence based Psychosocial Standard of Care. The rest is history. However, I am not sure we would have gotten to where we are a decade later, if we never held this Symposium. Which is why I feel Brett is a good coach for me. 

A few years ago, we asked Brett to serve on the Mattie Miracle board. Today we went to visit him at his office because he wanted a strategy session with us. For a while now, board members have encouraged me to think bigger. That the potential of Mattie Miracle is even larger and part of me doesn't want to hear it. I don't want to hear it because at times I can't handle more work and if we grow larger, my fear is that the focus moves away from Mattie. Today, Brett was able to reframe what growing larger could mean and we talked about ways to begin working toward this goal. Of course Peter's mind is already up to speed with what Brett is proposing and I on the other hand, need to absorb the information and take it step by step. 

Changing my thinking is no easy process or task. But like so many difficult conversations in my life, I can only hear such topics from certain people. People I deem trustworthy and having the best interest of the Foundation in mind. It took me ten years to get the Foundation up and operational, and to the place it is today. For ten years we have focused on DOING and as such, our reputation was built. It was built based on our accomplishments. Of course our next ten years will also be action oriented but at the same time it is important to bring more awareness of what we do and what we plan on doing. It is with these next strategic steps that Brett and his team will be helping us.