Paul needed a lot of help sometimes, and I enjoyed helping him. I have nearly infinite patience for most things, especially for him, and I could usually discern what he really needed. Sometimes he would act like he needed more help than he really did, and I could figure that out and push him through it. But mostly, I just liked being the guy that helped Paul out when he needed it.
Kathie was better at pushing Paul beyond his limits. She could yell at him and coerce him into doing things. I was not exactly an enabler, but I liked being his assistant. Maybe because I was the 6th (out of 7) kids in my family, or maybe because I read too many business manager books on servant leadership and truly believe in it, but I liked helping that kid “self-actualize”. Paul needed both of us because Kathie gave him warmth and pushed him hard to grow, and I gave him fertilizer.
It was like magic sometimes. Paul and I both knew what he wanted to do, we both knew the parts he could do, and what he needed help with. We both knew our roles. He could set table. I could cook dinner and impart a little cooking lesson to him. I told him it was important to learn to cook well, because that is the only way a guy that looked like me could get a girl that looked like Mom. Then we would sit down together, enjoy a great meal, and see who could belch louder. We had our way of doing dinner our own way, and if Mom protested, all the better.
Helping Paul is something I dearly miss. If you don’t have a child, or a handicapped child, or maybe if you do, it is hard to imagine missing that. But he was more like a dance partner than a patient. He would jump in the car, I would grab his wheelchair and put it in the back. By the time I got into the driver seat, he had the radio and air conditioner set up. If he started to act entitled to my help, we talked about that and he understood. We both had a job to do.
As a Dad, it was my job to get haircuts after a certain age, and this became a fun outing for us. The chicken wing restaurant is right there too, so we could get lunch first. He always ordered wings way too hot for him to handle, even after Dad warned him. He would suffer like crazy eating them, without admitting he made a mistake by ordering wrong. Then, at SportsClips I would get the MVP for him and the regular haircut for me. The MVP included a massage and hot towel – and about 3 chair transfers. I told Paul that he should transfer, and not let them just do everything from his wheelchair. I didn’t want him to be lazy. It was always fun to watch the poor stylist try to figure out how to ask him how all this MVP stuff this was going to happen. He would get a little amused each time before he flipped between chairs. He had a lot of upper body strength but didn’t look like it. I set them up, and he knocked them down.
For over 14 years, I read him a book every night. He was never a great reader, but we thought the more books he heard the better, and I had all the time in the world for stuff like that. Then he got his Bipap machine. I really resented that machine, because it interrupted what was an important ritual for me. After that, when Paul went to bed, he put that mask on and that was it, he couldn’t hear anymore. I never did figure out how to recapture that story time, and I guess he thought he was getting too old for it anyway. At 15, he was starting to find ways to not need Dad’s help anymore, and I had mixed feelings about that. I am sure all parents feel that way when the time comes.
I search for ways to feel helpful in the same way now. I am sure that I will, because the more I look, the more I see people who need help. Where I was singularly focused before, now maybe I will spread myself out more. There is satisfaction in being helpful to others. It brings people together, and it both honors Paul and helps me move forward.