Thanksgiving was always a special holiday for us and Paul especially enjoyed it. Kathie’s family has great food traditions and recipes are handed down, perfected and duplicated with each year. We started hosting many years ago – I think both because we were centrally located and because Paul did not travel well to non-accessible houses. It is attended by 20-30 family members from Kathie’s Dad’s side. This is a very important event for us to host and we literally make this a primary consideration when house shopping.
Of course, Paul loved hosting, but he was also just one of the family. Those of you with handicapped kiddos know how great it is when your kid is just part of the normal crowd and can relax. No extra eyes staring and no reason not to just be himself. Thanksgiving is not the only family gathering where he could feel that way, but it was the biggest and it was at our house. He had home field advantage and would show the younger kids his toys and games to entertain them. As he got older he played cards with the adults and got harassed about bad plays just like everyone else. He would deploy a world-class eye roll that involved his whole head hitting the table when this happened.
Whatever was going on health-wise, we always tried to plan around Thanksgiving. Things were really stressful in 2016. After moving to Fitchburg in September to get Paul into a bigger school, he had a series of physical issues that we could not figure out. He was missing a lot of school, we were trying to move in, and it was crazy. We didn’t really think twice about hosting, even in the midst of all the issues were having.
We ended up going in for a shunt exploration and revision right before Thanksgiving. It didn’t go well – there was no clear cause to the problems, no clear solution and symptoms persisted. Thanksgiving morning, Kathie spoke to the medical team. We wanted Paul home for Thanksgiving. The trust level between us and the team was pretty high, after all the water under that bridge over the years. We got a reluctant release, with a “If this was any other family, you would not be going home” and a “If you see anything get worse, you are right back here in the hospital”. Kathie had gotten him home somehow. She almost always got her way.
We had a great couple of days. I can always tell the photos from 2016 because Paul has a huge bandage on his head that he got each time he had his shunt revised. He stayed up later than he was supposed to, ate well, and laughed and played. It was good medicine for couple of days to be part of the family. I had a great speech written in my head and asked to say grace for the big meal, something that I had never done before. I got exactly zero words out before I started sobbing and no one could hear a thing I said. I wanted to thank everyone for travelling to our house so Paul could host. It meant a lot to us all. The emotion surprised me and I couldn’t get any words out.
Saturday, we had to take him back to the hospital and the staff that was on call for the holiday weekend, which oddly enough are usually the best specialists, revised the shunt again. These people are amazing, let me say again. At the time, we were good at just hanging on a plugging away at the next thing, medically, until something worked. Each time he had one of these surgeries he missed about two weeks of school and 6 weeks hockey. It was a long process back normal from shunt revisions, but we kept positive attitudes and kept plugging away like we had done for nearly 15 years at that point. We lost Paul 9 months later and that was his last Thanksgiving.
This year, without Paul, was still special in other ways and may people have reached out to us in thoughtful gestures. A big gathering was what we needed in a lot of ways, some normal routine and a reminder of the closeness and support a family can give. Everyone was here, and it was really a good time.
When it came time for saying grace, I heard my name called, but I know there as no way I could choke out even a word or two at that moment. Paige spoke up and volunteered. She said something like – “Be thankful for what you have, but also be thankful for what you don’t have, because that makes you appreciate what you have when you have it.” It was brilliant.
For nearly 16 years, when we had good times and good health with Paul, we probably did push things hard. We didn’t consciously consider we could lose him, but we did understand the precarious situation he was in. Any plans we made, any trip tickets we bought, were always with the understanding that we my have to cancel at any moment. If we did actually get on the plane, or get to the national park or ice rink or whatever, we were pretty grateful to be there. And he was going to make the most of it.
We have retained some of this gratitude in that we often feel lucky to have had Paul for the time we did. We are grateful for what we don’t have, because it reminds us every day of the things we did, and do, still have. The holidays, and Paul’s birthday are going to difficult for us. We know that. We still have not completed the thank you notes or gotten very far on cleaning his room up. But not because we are “out of it”, but because we are taking our time to be compassionate with each other and ourselves.