Sunday, May 25, 2025

Sunday, May 25, 2025

Tonight's picture was taken in May of 2006. Mattie was four years old and it was Memorial Day weekend. We took Mattie to Pennsylvania and visited Sesame Street Place, a theme park geared toward preschoolers. Anyone who is familiar with Sesame Street, recognizes this green door, featured in the long running TV show. Mattie posed in front of it with his Elmo balloons. Elmo was Mattie's favorite character. Mattie could be multitasking or even be in another room of our townhouse. If he heard Elmo on the TV, he literally would STOP what ever he was doing and was transfixed onto the TV. That was how much Mattie LOVED Elmo. While at the theme park, a life sized Elmo came up to Mattie. I thought Mattie was going to be frightened, instead.... he greeted Elmo and apparently made an impression on this Elmo, because the next thing I knew he handed Mattie an Elmo balloon... which was how Mattie landed up with two. I will never forget the beautiful Memorial Day parade at that park, honoring all branches of the military. Truthfully the whole crowd was sharing in the spirit of the day. 

Quote of the day: Don’t wait until the storm passes – anyone can do that. Learn to see what the storm came to teach you. ~ Pema Chödrön

Practically daily, Google sends me photo memories in my email inbox. Some days, I can open these emails and look at the memories and other days, I JUST CAN'T! I can't because I am afraid of what will be featured in the photos, such as content that highlights my life with my husband. It is very hard having a close bond with someone for 35 years, having a child together, going through childhood cancer together, losing Mattie, and then finding a way to re-engage with the world without our son. We have had quite a life together, filled with many challenges, but the one constant was..... US. Now the one constant that has been a part of my life all these years has gone. I am not sure this will ever be something I will accept. I am aware of it, but I do not understand it one iota, given our incredible bond. 

Any case, I did bravely open the emails this week and of course to no surprise, all of the photo memories highlight Mattie Miracle Walks. Makes sense to me, as the Walk is always the third Sunday in May. I truly can't believe that I have hosted 16 Awareness Walks. Where did the time go? I decided to share these ten photographic memories with you!   

Of course some of the photos are NOT Awareness Walk related, but nonetheless, all were taken on May 13th of different years. I would like to call attention to the photo in the lower left.... Mattie was sitting in a wheelchair with his physical therapist, Anna by his side. We took Mattie outside to the hospital rose garden for his session that day. Anna was encouraging Mattie to blow bubbles (for his lungs), but he just wasn't interested. She could sense an emotional low in Mattie, so she bent down to talk to him. I captured this tender moment, because what this photo told me was two things.... first Mattie, felt comfortable enough to confide in Anna, and Anna understood that though her role was to get Mattie moving, she knew that the emotional connection she had with Mattie was vital and needed to be nurtured in order to have an effective therapeutic bond. 

This cute girl you see in the swimming pool was Sammie. Sammie and her family lived on the West Coast, but we became connected by email, because both Mattie and Sammie were diagnosed with bone cancer. Sammie was further along in her cancer treatment than Mattie, but like Mattie was a live wire and a force. I will never forget the day when I learned Sammie was dying. She died before Mattie and to this day, I will never forget the bond I shared with her mom. 

The middle picture on the right features Tricia and her family. Tricia was Mattie's favorite nurse. Truthfully Tricia cared for all three of us and to this day, we remain very close. Tricia wasn't just an amazing nurse, she was a fierce advocate. She assisted me on multiple occasions. One incident at the hospital I will never forget. A PICU nurse was barring me from entering Mattie's hospital room. She accused me of being the problem, the reason why Mattie was demanding pain meds. This nurse even convinced Mattie's doctor that I was a problem! Meanwhile, Mattie was in his room screaming for me! I literally thought I was going to throttle both of them. Who stepped in? Tricia. Literally Tricia took on both this headstrong nurse and doctor. By the time she finished with them, they backed off because she let them know that the reason Mattie is emotionally stable at all was because of me and she would know this first hand because she spent MONTHS with me caring for Mattie. Way to go Tricia! 

Literally our Walks had all sorts of activities from rally races, Zumba dancing sessions, and walking around the track. The energy on the track was memorable. 

When I look back at the live Walks, I wonder.... how on earth did I do this?! The amount of work that went into this day is hard to describe! I was responsible for every attention to detail! Which meant getting permits from the city to host our event, as the Walk was open to the public. Coordinating the logistics of tents, tables, food vendors, other vendors who did child friendly activities (Legos, face painting, Retile Alive show, caricatures, etc!!!), a raffle, our DJ, our program and schedule of the day, posters created and displayed around the track featuring childhood cancer facts, stories, and our accomplishments, and seriously the list went on and on. It would take me months to organize this and then several months to put the Walk away and manage the administrative clean up. 

As our event got bigger, we hired a professional photographer to capture the energy of the day! I always loved his group photo of us before the cowbells rang for the start of the Walk! Why cowbells? Well I tried other sounds but they frightened the children. Cowbells were the only sound that everyone could tolerate! Until years later, we got a DJ, and he would kick off the start of the Walks with the song, Dancing Queen!

With each lap that people walked around the track, they would earn a bead. For example one year the word to spell out was LOVE. Therefore the first lap they earned a red bead, the second lap an L bead, third lap an O bead, fourth lap a V bead, fifth lap an E bead, and the sixth lap another red bead. Each participant was provided with a mini flashlight or carabiner clip and string.  

See the beads?

The LOVE bead station!

Do you see people sitting in the stands? That is because in the early years of our event, we had a formal program with a guest speaker! 

Notice the photo on the left, with kids sitting on the grass. They were watching and participating in a magic show. Since Mattie LOVED magic, his mentor, Bob, hosted a show in Mattie's honor at every live Walk!

We also had a robotics group attend our Walks and they brought the robots they designed to the event! YES even the robot did laps! 

You can see the orange spirit of our walkers. When we had a live event, each participant got a specially designed t-shirt for that year. I hosted ten live walks (2010-1019), so out and about in our community are ten different t-shirt designs. I love seeing our long time supporters continuing to wear our t-shirts even during our virtual Walks! 

These photos were taken at the Mattie March in 2009. This was an event Mattie's support community hosted for him, to show love and support for him and our family. Remember at that point in time, we thought Mattie was going to return to school that Fall (2009). Unfortunately Mattie died four months after this event. The Mattie March served as the template for the creation and launch of the first Mattie Miracle Walk in 2010!