Tuesday, June 30, 2015

Tuesday, June 30, 2015 -- Mattie died 303 weeks ago today.

Tonight's picture was taken in June of 2009. I thought I lost this photo, but I just downloaded it off the blog! I think this photo was adorable! Mattie was multitasking and on either side of him was a HEM/ONC nurse. On the left is Sarah Marshall (his day time nurse) and on the right is Ellen (his night time nurse). The love of a nurse! It says it all!!!



Quote of the day: Those who make compassion an essential part of their lives find the joy of life. Kindness deepens the spirit and produces rewards that cannot be completely explained in words. It is an experience more powerful than words. To become acquainted with kindness one must be prepared to learn new things and feel new feelings. Kindness is more than a philosophy of the mind. It is a philosophy of the spirit. ~ Robert J. Furey 

Back in May of 2010, for our first Foundation Walk, we received in the mail a case of Pork Barrel BBQ sauce. This gift in kind was sent to be used for our Foundation raffle. After our event was over, I acknowledged our donor with a note, never realizing who exactly the donor was in terms of his profession! I just assumed he was into BBQ sauce! 

Months later, the donor of the case of BBQ sauce contacted me to let me know that he wanted to meet with us. He elaborated on the fact that he found out about our story through a Del Ray, VA business association list serv posting which was advertising our Walk. This posting inspired him to send the case of sauce. However, in the mean time he started reading through our blog and was eager to meet with us. In all reality, I thought he most likely wanted to give us more sauce or plan a BBQ fundraiser. I had no idea when we met with him what was going to transpire and what has transpired now five years later. Why?

You see..... the co-founder of Pork Barrel BBQ Sauce, the man we met with that day, is Brett Thompson! By day Brett's expertise is in lobbying, creative strategy, and communication. When Brett was a lobbyist on Capitol Hill, he and his friend Heath (another fellow lobbyist) brainstormed that they wanted to create a great BBQ sauce because when they worked late nights on the Hill for their bosses they apparently had a hankering for BBQ. So their sauces and their company arose out of their work on the Hill. Not to mention the catchy name "pork barrel," reminds you of pork barrel spending, no?!

This is all an aside.... when we met with Brett in 2010 at a Starbucks, instead of talking BBQ sauce, Brett immediately started telling us that he really admired Peter and I, believed in our Foundation's mission and wanted to help support our legislative agenda, which was psychosocial care and wanted to sign us up in his lobbying firm as a pro-bono client.

Can you imagine how stunned Peter and I were??!!! That was in 2010! It is five years later, and guess what?! Brett is still working with us. I refer to Brett as my number one cheerleader. Brett is now a member of our Mattie Miracle board, because we realize how invaluable Brett is and how invested he is to us and our vision. 

In 2012, another childhood cancer organization asked Mattie Miracle to fund a conference they wanted to sponsor. This was something I truly would have considered except the proposal really did not match up with our mission. When this opportunity fell through, I told Brett about this and he convinced me that I did not need any other organization. Instead, he felt that Mattie Miracle could plan its own conference right here on Capitol Hill. It was a bold move, which required us to take a chance. But Brett gave me the courage to take this chance. Without Brett, we wouldn't have done the symposium on Capitol Hill, and without that symposium we would never have pulled together our core team of researchers and without them there would be NO STANDARD of psychosocial care. So really ONE person believing in you can make a difference. 

Brett introduced us to George, who is a partner at Banner Public Affairs and runs their Communications and media relations practice. George met with Peter and me today at Pork Barrel BBQ Restaurant in Del Ray, VA. Seemed like a symbolic restaurant to meet at, given that this BBQ sauce is what brought us together with Brett in 2010. George wanted to introduce us to a Washington Post reporter who is interested in potentially doing a story about the Foundation. So we met over lunch with the reporter and talked for two hours and shared our story.  

These are all the BBQ Awards that Pork Barrel BBQ Sauce has won over the years. Their most recent win was this past weekend, at the Safeway BBQ Battle in which Pork Barrel won for Best Beef. 


Whenever Peter and I share our story with someone new, I admit I greet this opportunity with some trepidation. Because I never know whether I will get my point across, if I will do Mattie justice, and if my memories can really bring Mattie to life again for someone who did not know him. This is a tall order to deliver upon. However, the reporter was absolutely delightful. Truly human and we related to each other immediately. Which made it super easy to want to share our journey, she wanted to hear about Mattie and our experiences, and honestly wanted to help and make a difference. A true gift, and meeting people like this makes you feel like there is hope for our world.