Thursday, May 22, 2014

Thursday, May 22, 2014

Tonight's picture was taken on April 20, 2002. Mattie was literally 16 days old! I am not sure what was more funny here! The fact that Mattie was bright eyed and focused on the camera or that Patches was sprawled out on the couch not paying a bit of attention to any of us! At this baby stage, Mattie looked more like Peter. However, as we joked, that did not last long. As soon as Mattie reached about four to six months old, he began to look exactly like me. I would go as far as to say that we had similar personalities as well, and we both were emotionally driven and passionate about things. Which is why we understood each other well, we got how we viewed the world, how we viewed people, and we appreciated that about each other!


Quote of the day: Sometimes its not the strength but gentleness that cracks the hardest shells. ~ Richard Paul Evans


I have finally begun to comb through the 500+ photos that were taken from this year's Foundation Walk! I am so thrilled we hired a professional photographer, because I think Herman did a beautiful job. Herman worked with us once before, during our Faces of Hope Walk in 2011. It was important to have him back for our 5th anniversary Walk. He captured parts of the Walk I never got around to seeing!!! Over the next couple of days, I will be sharing photos with you. I hope you enjoy them and you get to relive the Walk with me. 

Herman captured us before we began walking (keep in mind that our first lap was to Dancing Queen--- a Mattie favorite)! Holding the banner with me are Joan Holden (the Head of St. Stephen's and St. Agnes, Mattie's School), the Mayor of Alexandria - Bill Euille, and Emily and Abby Doane (preschool buddies of Mattie's). Right next to Peter and "James the Roach" is Brandon Johnson, Mattie's Big Buddy. Brandon was part of our Honorary Walk Committee this year, along with Joan, the Mayor, Linda Kim (who is wearing an aqua blue jacket on the far right of the photo) and Tricia Grusholt (Mattie's favorite HEM/ONC nurse, who is in pink and standing right next to "Phil the Squirrel" on the right hand side of the photo).

Before we began our Walk, Mayor Bill Euille gave our participants a greeting! 











Mattie Miracle acknowledged the Mayor for his participation and presence with a glass plaque!

Mattie Miracle also gave a special acknowledgment to Joan Holden. Joan is retiring from St. Stephen's after 30 years of service to the School. Though everyone in the community is aware of Joan's achievements as a head of school, we were giving her a leadership award for her service to the Foundation. We met Joan when Mattie was accepted to her school in 2007. When Mattie was diagnosed with cancer, Joan would visit Mattie in the hospital and did everything possible to support him from a school stand point. When Mattie died, Joan continued to reach out to Peter and me. She NEVER forgets Mattie's birthday or an anniversary and writes to us on each of these occasions. She also gives us access to her campus every May to host our annual Foundation Walk. Our annual Walk generates over 80% of our operating budget, therefore, this event is crucial to our survival. In a way, Joan enables all of this to happen because she believes in our cause and mission. For this we are grateful and she will always hold a special place in our hearts. Such loyalty and compassion are not replaceable. 

Pictured from left to right are: Virginia (Vicki's mom), Linda (Mattie's Child Life Specialist), Peter, Vicki, and Karen (Vicki's lifetime friend). 

A good portion of the Walk funds go to endow the Mattie Miracle Child Life Program Fund at MedStar Georgetown University Hospital. The coordinator of Child Life is Linda, and Linda is a person Peter and I will always be grateful to because of the outstanding care she provided Mattie and us. As I always say, if I am sick, I want Linda brought in immediately to provide my care, and I am an ADULT! 

Pictured from left to right are Brandon (Mattie's big buddy, and a Lymphoma Childhood Cancer Survivor), Peter, Vicki, Tricia (Mattie's favorite HEM/ONC nurse), Nicole (Tricia's older daughter), and Virginia (Vicki's mom). 

Brandon is a devoted and loyal friend of Mattie's. These two boys were very different age wise, and yet they got along and understood and respected each other. Though Mattie is no longer with us, Brandon never skips a beat. He comes to every Walk and carries Mattie's memory forward. I will never forget the day Mattie died, Brandon came to the hospital and sat in the PICU room with us. Remember Brandon was a teenager, and he was sitting in a room with a dead body of a seven year old. This isn't easy for an adult, much less someone so young and impressionable. I am not sure everyone knows this about Brandon, but it took a lot of courage to come to the hospital that day, a place where he had been treated himself months before, to come to say good-bye to his friend. A friend who had already died. So in essence he was attending a wake within a PICU room. 

As for Tricia, I will never forget my first true encounter with her. Early on in Mattie's chemotherapy process, we were in his PICU room and Mattie was having a really bad day. He was upset, angry, and lashing out at me. He was pushing me and told me he HATED me. Tricia was in the room for ALL of this. She could have easily walked out of the room or even judged what she was hearing. But she did neither. Instead, she told Mattie that he did not mean what he was saying. Instead she said we were both tired and encouraged us to rest. She escorted us into bed and literally tucked us in together. Mattie took her advice and settled down and I was in tears because the whole thing was beyond toxic and overwhelming. It was in that moment that I saw Tricia's true character. A woman with spunk who also wasn't afraid to advocate for what was right for a patient, even if it meant confronting a doctor or two. Mattie knew he could trust Tricia, we all did, and each time we see her, that feeling some how just comes to the surface. 

New to our Walk this year were themed characters. We had three! Clearly this was Sponge Bob! Played by our friend Tad! Next to Tad is his daughter Bethie. Bethie's brother is Kazu. Mattie and Kazu were good buddies in elementary school and to put it further into context, Sponge Bob's wife is my good friend Junko! 

Mattie absolutely LOVED Sponge Bob. Mattie would have gotten a huge chuckle out of seeing Tad dressed up as Sponge Bob at the Walk! 

This fellow in brown, is James the Roach. Now you could be asking why do we have a big roach at the Walk?! Well James purchased this costume for Mattie's 7th birthday party, which we had at his house. This was Mattie's last birthday, and Mattie happened to love bugs. Our friends James and Christine hosted a party that none of us will forget anytime soon. Beside James dressing up as a roach, they also hired Reptiles Alive to come and entertain the kids. Mattie got to see and touch snakes and other horrific looking things from my perspective. Needless to say, Mattie was partial to James' roach costume, and therefore in honor of Mattie, this costume was worn at the 5th anniversary Walk. Walking next to James is Campbell. Mattie's very close buddy from kindergarten. 

I leave you with this tonight!!! There is much, much more to share. Until tomorrow.