Kathie and I are talking a lot to figure out what happened. I have had some difficult days this week, now that time has slowed a little, thinking about all the things we will not be doing with Paul. Talking with her helps me a lot.
In retrospect, it is now clear that Paul was on a downward path, healthwise. This became evident after reviewing photos to include in the celebration. In the last year and a half, he lost more function in his bladder, vocal chords and most recently, his eye. Issue was stacking onto issue. He was on a Bipap to breathe at night and his legs had become mostly dead weight as he grew.
We were finely tuned over the last 15 years to observe these things, research them, call the appropriate professional and figure out a plan. That is just how we always worked. Take a minute to absorb the info, shed a tear, then move forward. We had seen health setbacks before, and we always conquered them or figured out how to cope with them. It didn’t occur to us, and we didn’t allow ourselves to think, that there was not going to be a positive outcome eventually to each of these issues.
Paul missed about a quarter of his Freshman year due to health issues. We lost count, but he endured over 40 surgeries in his short life. He was facing a bladder augmentation, possibly intervention for his vocal chord paralysis, and probably further leg surgeries in the future. A feeding tube had been brought up as a future possibility and he loved good food. It gives me some solace that we won’t have to break that news to him. He was always brave about it, but there was a lot of disappointment in his face, and sometime tears, whenever we had to tell him he was going in for yet another surgery. I won’t miss telling him that.
I realize lots of families with disabled children will be reading this. I am not saying we wouldn’t want to do those procedures. We would have sucked it up and gone ahead with a positive outcome certain in our minds. If you are facing one of those surgeries, I don’t pity you, I envy you. SB is not supposed to be a degenerative disease, and in a lot of people it isn’t, but for Paul, things were breaking down.
Most likely, the path ahead would have been very tough and it would have taken more life out of Paul. We never really sat down and looked at the 15 years of photos we have of Paul until now. Reviewing the photos of that energetic and active kid reveals a kid full of life and fun, but it also shows a body in decline as Paul got older. I take some comfort in the fact that he could be active right up until the end, inspiring us.
At the memorial, we have about 600 photos that will be on the video system. Most are active and smiling. A few are of him in the hospital, Grandma Sue took a bunch of those because we couldn’t and didn’t want to remember those times. But they were, after all, a disproportionately big part of who he was. He won’t have to go through that anymore, and for that I am comforted.
Talking about this with my bride, I said I pictured Paul running through “Fields of Gold”. She said, he isn’t running, he is wheeling, it is part of who he is in her mind. Not a handicap, but an appendage. Either way, he is not facing any more surgeries and with that and the incredible outpouring of love, it feels like the start of something positive to me.