Writing helps me sort out the grief from the loss of Paul. I am not the first person to suffer a tough personal loss, but I am learning a lot about pain and I want to filter through it in my mind. Writing helps me cope, and imagining I have an audience helps me write. In those tough moments when I miss him, choosing the right word is a distraction that soothes.
I think that there are clearly two distinct kinds of pain with the loss of a close loved one and I am sorting that out. The first pain is the pain that I can share with everyone else. This is the sobbing, hugging, mess the first time I see each of my family and friends. I hugged and cried with friends I had not seen in a decade or more. I found common ground with and for family that usually antagonize each other for some dumb reason. I had the opportunity to thank people for all that they have done for Paul in the last 15 years. Somehow this pain hurts intensely for a few minutes, and then the higher brain realizes that something good is being provided by the loss of Paul. Relationships are strengthened, friends remind each other why they are friends. It is bittersweet – still pain but a relief in some ways that clarity has been provided.
The second pain is icy, hollow fear. Fear that we lost something valuable that we will never find again. I find this pain nearly impossible to share, although I am sure many people have the exact feeling. It is not regret, it is longing. Everyone I talked to who has lost a child says this will never go away completely. I do suppose it is magnified to an unreal proportion right now, and it will subside some in time. But right now, it is raw and it is not going anywhere anytime soon. Kathie is an immense help, because we always have talked about everything. Having a kid as complicated as Paul will do that for your marriage.
I hope I live every day with a tiny fraction of this fear. Maybe you already do. It is a reminder to have dinner together, because you may not have it again. It will compel me to get off my brainless electronic devices and find something to do together with Paige and Kathie. I hope it will push me out of bed to go watch the sled hockey kids I have grown to love so very much, even if it hurts that Paul is not on the ice.
I am proud of Paul, I am sure everyone can see that. I think he was so confident in part because he heard “I love you” so many times every day. Not just from us, but from all the people around him. Hearing that so often must have given him confidence to try new things and face his 40+ medical procedures. It must have taken guts to roll into a room at school and be the only kid in a wheelchair. Or on a track, or a restaurant, or anywhere. He seemed to face this fear with some confidence and perhaps some ignorance of the fact that he should be afraid.
In retrospect, I guess Kathie, Paige and I knew on some level that Paul’s time might be limited because of all the issues he had along the way. We lived on the edge more than most. We hugged, cheered, cried like crazy, and said “I love you” all the time. We hunkered down for the challenges and we celebrated some big victories. I remember the trach removal when he was 2 and weaning off the seizure meds when he was 12. We thought we could weather this storm too, and that better days were ahead.
I would like to tell you about my last night with Paul. We went out to eat at Babe’s for burgers. Kathie had a hockey meeting there, so Paul and I ate and then left her there for her meeting. We came home and he crawled into bed with me to watch TV. Our living room does not exist right now due to renovations, so it was the only dust free place with a TV. It was the first time he and I had watched TV together in a long time, and there was simply nothing else to do because our house is all tore apart.
I am somewhat embarrassed to say that we watched Bachelor Island. He was not going to watch History Channel and I was not about to watch TeenNick, so we found common ground watching bikinis. We laughed at the fake drama and shallow chatting. At bed time, he hauled off and did his lengthy routine that he needed to do to survive each day. The last thing I said to him that night when I went in for light’s out was “I love you”. The first, and only thing I said to him Tuesday morning was, “good morning, I love you”. He was still in bed when I left for work. Both times he mumbled back “Love you too”, the way he always did.
Telling stories about Paul helps me a lot. I run it in a loop in my mind until the words are just right to tell it. It helps me remember Paul without just experiencing the fear of loss, but also the joy of that moment. Maybe this helps you too and I hope you share your stories with us on Sunday or someday in the future. If you have a sweet, poignant or funny story, and it helps, write it down for us to keep on paper. We are hoping to get organized enough to have a brief program for Paul on Sunday, and if you have a great story and want to share it, send us a message.
Thanks for reading this. It really helped me to write it.