There came a time most every day where Paul had just had enough. He pushed himself hard and talking and getting around simply took more effort than it did for anyone else. He seldom had to be convinced to go to bed. In fact, he had a fairly lengthy bed time routine, so deciding it was time for bed was just the start of a process of selfcare that was at the same time draining and good prep for sleep.
It was especially tiring when we would get home late from a hockey tournament or some other event and instead of just brushing teeth and crawling into bed, he had a few things to do first. Teeth, meds and bathroom routines, setting up the BIPAP and whatever stretching or other PT was prescribed became rituals that took the place of reading stories as Paul got older.
It was not a bad thing to go through this with him. It is nice to be needed as a Dad. It was a ritual like any with any kid, but with SB kids, the stakes are high to do them every night. I am proud that we were absolutely rigorous with these routines and very rarely wavered. We knew his long-term health depended on it. Paul was a trooper and even if he whined a little about being tired when he was very tired, he soldiered through these things with no complaints about doing things other kids didn’t have to do.
In the short time since Paul passed away, I have been to a couple of funerals and had other acquaintances pass away. I now read the little poems and messages more closely than I did before. Some resonate and some do not. The ones that talk about finally being at rest touch me the most.
Paul could finally do away with the time-consuming chores he had to do each day. Chores that were a constant reminder to him that he was not whole. Chores that we eventually got used to doing, but that kept Paul apart from other kids. Chores that prevented ever having a sleepover and that made traveling a risky endeavor. I miss those chores somehow, but Paul can rest easy now, and there is comfort in that.
I feel the need to take a little break too and stop writing these for a while. I love to write about Paul. However, it takes a lot of emotional energy. I think I might want to try to direct that other ways. I am not doing all I can to be the best husband, father, son, brother, and co-worker. I am not saying goodbye to Paul, but goodnight for now. Kathie has this idea of Paul’s Party, which is not really a party at all, but a way to honor Paul by doing random acts of kindness. I want to work on that and I hope you consider doing it too.