Thursday, January 2, 2024

Thursday, January 2, 2024

Tonight's picture was taken in January of 2009. We were staying at a hotel in NYC. Why? Because Mattie was scheduled to start an experimental treatment at a well known cancer center. When we checked into the hotel, the front desk took one look at us and Mattie, who was in a wheelchair, and they immediately upgraded us from a regular room to this incredible suite. The suite had fantastic views, a balcony, and a kitchen. Mattie was so thrilled that he was inspired to get out of his wheelchair and attempted to walk around. Of course, because of Mattie's limb salvaging surgeries, he couldn't walk far and definitely couldn't walk without holding on or bracing onto things. But in true Mattie spirit..... He did it! 

Quote of the day: Authenticity is a collection of choices that we have to make every day. It's about the choice to show up and be real. The choice to be honest. The choice to let our true selves be seen. ~ Brene Brown

When Mattie was diagnosed with cancer, he was given a book entitled, Journey Through Heartsongs. The book was written by a child who shared his name.... Mattie Stepanek. Mattie Stepanek, was local to us, and was 13 years old when he died. He wanted to be remembered as a poet, peacemaker, and philosopher. He even published seven best-selling books of poetry and peace essays. I believe that the hospital staff introduced my Mattie to Mattie Stepanek, to illustrate to him that even with an illness, one is able to live a productive and meaningful life. It was meant to inspire and empower my Mattie. This book, written by such a young author, remained a part of me over all these years. 

Why am I bringing this up? Because while reading about President Jimmy Carter's life and his passing on December 29th, I learned that he knew Mattie Stepanek. In fact, Mattie Stepanek's last wish was to meet President Carter. If you haven't read this story, check it out, it is very touching! Mattie's Stepanek's mom credits the bond between her son and President Carter, for the reason that her son never gave up on life. 

President Carter understood the power of the human connection, and though he transformed Mattie Stepanek's life, in the process this friendship had a profound impact on him. That is the beauty of what can happen when we open our hearts and minds to our fellow human beings. When I read the story of President Carter and Mattie Stepanek, it triggered many memories for me. Memories of countless visitors who came to the hospital to interact with Mattie. I also believe that it is due to these visits that Mattie was inspired to keep on fighting!

All sorts of wonderful people came to visit Mattie in the hospital. Friends, family, classmates, teachers, school administrators, and volunteers. Here are a few examples............................... 

Long time blog readers may recognize the 'Magic Man.' Bob was the head of the lower school at the time and learned the art of magic from his own dad. Bob passed along these gifts to his students. That year, he took Mattie under his wing and visited Mattie monthly in the hospital to teach him to perform magic tricks. I can't tell you how vital his connection with Bob was, as Bob taught Mattie a unique skill that other people didn't have! That was a big deal to Mattie! Though Mattie was limited with his gross motor movement, his fine motor skills were intact. Mattie took to magic and magic gave him an outlet to express himself and to connect with his health care providers. Mattie did not always want to talk, but he was happy to perform a trick or two. Which of course naturally led to conversation. But my point to this story, is the connection went both ways. I believe Mattie had a profound impact on Bob's life too, and to this day, Bob renamed one of his magic tricks.... the Mattie Brown. 

This was Sally the Story Lady. Sally was an amazing lady. She would come to the hospital once a month and tell and act out stories. She always brought props! Mattie took to Sally like a duck to water. Which was saying a lot, because not all volunteers resonated with Mattie. No matter how Mattie was feeling, if he knew Sally was in the pediatric unit, he wanted to see her. But in turn, Sally loved Mattie. I think Mattie inspired her creativity, and together they were the dynamic duo.

This was the chemistry club. These university students would visit the pediatric units on Fridays! Literally we loved Fridays. Chris, the head of the club, was phenomenal. Just like with Sally, if the Club was in the Unit, Mattie wanted to participate. Some days the Club came and performed in Mattie's small hospital room. After Mattie died, Chris contacted me to tell me how much his time with Mattie meant to him, and how Mattie inspired him to decide to go to medical school. 

This lovely lady, was Mattie's technology teacher, Mary. When Mattie was in kindergarten, he would come home and tell me all about Mary! He thought she was special and a kind person. Mary visited Mattie monthly in the hospital and she even gave him his own laptop to work on. While Mary was visiting with Mattie, I would leave the room and get a bit of a break. In the process they bonded together and they created many beautiful artistic masterpieces on the computer. Mary even captured Mattie's voice during many of these sessions. Which became legacy pieces for me. 

I honestly could fill up this entire blog with photos and stories of the countless visits Mattie received during his 14 month cancer battle. But here's the thing..... we all have the power and ability to transform someone else's life for the better. It doesn't take money or special talents and abilities. What it takes is time, effort, commitment, and emotional investment. I saw this first hand with all of Mattie's devoted visitors. These visits were crucial to our daily routine. It is very hard living on the edge, making life and death decisions 24/7. Having these wonderful diversions took our minds off of cancer for a few minutes to an hour, and in that snippet of time, we felt more normal. Mattie could be Mattie and Vicki could be Vicki.  

If you have never had the opportunity to volunteer or work with someone like Mattie, who is dying, then I am sure what I am going to say may sound odd. But I have found that people who know they are dying, are actually very inspiring. They have an appreciation for the frailties in life and they seem to have a greater clarity for what is important and should be valued. What I do know is I will never forget any of our visitors and it is my hope that hearing these Mattie stories, instills in all of us that we have the ability to make a difference in someone's life each and every day. To me that is what makes life worth living.... the art of helping others, because it is through helping others that we ultimately help and improve our own lives.