Paul Saxon has earned his angel wings. I think everyone that knows Sydney certainly knows of Paul and his family. They were a fixture in our lives from nearly the very moment of Sydney's diagnosis. In fact it was Terrill, Paul's dad, who was the first person I had ever met that had a child with neuroblastoma. At the time, they were a huge source of hope for our family. It was Terrill that explained to me in those first few weeks after diagnosis that life would never be normal again but that our lives would take on a new normal. He told me that we would be okay. That we would make it through. It was that support and those words that gave me the strength to plug on and to care for my family. Much came from that first conversation up on the floor of Cook's and they are memories that will last with me forever.
Paul truly touched us. We did not see a lot of he and his family but they always felt particularly close. And, on those occasions when we did see him, he always made a lasting impression. We remembered all of his milestones because they were always a sign of great hope and happiness for our family. It wasn't long into Sydney's diagnosis that Paul had his break out party from stem cell transplant. I remember him dawning the doors almost in shock from all of the faces gathered around him. As I stood in the background along the wall in the oncology unit it gave me great comfort. Here he was standing, renewed and pure. With everything we were going through we could make it. It was possible to come out of this nightmare beautiful and whole. "Beautiful and whole" that is how he made me feel that day.
There were many other times that we crossed paths on our journey. I remember vividly meeting them up in the entry way at Cook's the night before they took their Lunch for Life dream vacation to Walt Disney World. He was so giddy - standing there with his brother. I still remember the trip to Toys R' Us to pick out the movies and toys for his trip and if you gave me a moment I could tell you what each and every one of them were. I am still sorry that I could not find more Teenage Mutant Ninja Turtle movies. I also recall seeing him on countless occasions in and out of the clinic. I clearly remember being so incredibly impressed by his skills as an artist. To this day I have never seen someone so keen with a pencil as this little boy. Visions of his life like drawings of dolphins swim through my head as though they were real. Believe it or not, I will even watch NASCAR (and secretly enjoy it) because of this little boy. It is not that I like car racing but because it brought so much joy to this little boy and his family. And, to this day, every time that I walk through Cook's, I have been prone to lose change in various places around the hospital just in hopes that Paul would find it. That was one of his favorite pastimes and one that I remember from being a little boy myself. Yes, in a strange way, Paul is a part of our family, part of who we are.
Much of our love for Paul came through my relationship with his father. I can't tell you how many times he and I chatted over the phone or via email. We were always looking for a cure - the next idea. Although Sydney and Paul were never parallel in treatment, Terrill and I always found time to bounce ideas off of each other. I just wish I could have found the answer for them. In some ways this feels like my own failure. I wanted so badly to have the right answers for them but I just did not have them. It is kids like Paul and their memory that keeps me motivated everyday to work harder and faster to find the answers.
I can't make sense of this. Heck, it never does. But, what I can tell you is that Paul will live on in my heart. He will be a constant companion and a constant reminder of what is important in life. He will remind me to stay diligent so that we can help as many kids as we can. One day we will find a cure for this disease and we will find it faster because of him. It is kids like this that remind us of what is important.
Please pray for this family. They need our strength.
Paul is my purpose, too.
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