Thank you to everyone who helped and attended Paul’s celebration yesterday. Kathie and I were very grateful that people “got it” and talked about the remarkable things Paul did during his life, and that the pity party was nowhere to be found. Paul did not feel sorry for himself, and it was of no value to show him pity or to dwell on what might have been.
The best part of the day was hearing stories about Paul that we had not heard. We worried about him not having any friends at school, because he never liked talking too much about his day. He missed a lot of school, and was behind in classes often, so we wondered how he was accepted. It was the best feeling to hear from his classmates, teachers and staff, both Belleville and Verona, about the things they remember about him. These were often events and interactions we had never heard before.
Kathie and I thought one thing was particularly funny. Paul was asked not to swear, and I don’t believe I ever heard him swear. The only exception was that he was allowed to use the word “suck”, but only about two things – an upcoming surgery and the Chicago Bears. If you know Kathie and I, you can imagine he heard plenty of bad words, but he had excellent self-control, because they were never repeated back to us. Yesterday we heard several stories of Paul using cuss words. We are really proud that they were used at appropriate times, with appropriate grammar, and that he was able to hide it so completely from us. Sometimes those are the only words that are suitable, and he understood that, apparently.
As Paul’s parents, our job was to be thinking one step ahead of him whenever we could. We were not always the most organized or prepared, but we did OK. There is one particular conversation that I anticipated that I could never resolve, however. I imagined Paul, sitting on his bed crying, and when asked him what was wrong he would ask “Why me, Dad? Why am I the one with the issues, and all the other kids don’t have to deal with them”. I wept every time I imagined this conversation, because there is no answer. Life is not fair and that is how it is. What could I say that wouldn’t fail on the family BS Meter? We were always honest with Paul and this question couldn’t be dodged.
We never had that conversation. Paul never asked us why he was different, or why he is the one who had to have all the medical problems. So, whenever my brain starts to head down that road, I have to stop – if he is not going to complain about it, or feel sorry for himself, who am I to pity myself or him. Many, many people have told us that Paul was an inspiration to them over the last few days. I think this attitude was the reason why. It inspires me during this time, and will forever.