Paul’s last night, for some reason I got up twice, just to check on him. It’s not like I never did that, but it was rare. Never twice in one night. I left for work in the morning after saying good bye and I love you to both Paul and Kathie. In the summer, they get to sleep in. An hour later I called Kathie from my desk. I told her I couldn’t sleep, something was wrong, I was anxious and couldn’t figure it out myself. I might need to talk to someone. He passed away later that day. I can’t explain that last night. Since then, it has been gut vs. brain for me.
My brain knows we had something special and I should be happy about that. Paulie was a ton of fun and we spent a lot of time hanging out and going on adventures together. Paul allowed us to enter a different world of disabled kids, parasports, health care workers, therapists and doctors. The brain now knows that the World is a much better place than we ever knew it was. There is a silent army of caring people out there that you probably don’t even notice or know about unless you need them. We learned to depend on and to love many of those people. Paul made daily life rewarding in a lot of ways.
My gut just says “loss”. What could have been. It just feels hollow and doesn’t give any hope that things will ever feel better. The gut might send me for real help someday, but I am pretty sure a therapist will either prescribe meds or work on rationalizing things to get my gut to quiet down. I don’t trust meds.
The brain says we were lucky to have Paul for 15 years. The gut has a hole in it because he is not here. For the gut, there is a dichotomy – Paul vs. no Paul. He is gone. The choice for the brain is 15 years of Paul vs. not having Paul at all. I hope to think about it rationally and go with my brain. We are entering another phase of life. Like finishing school or getting married. A change in lifestyle, a change in the people around us. Mourning the loss, for sure, but grateful we had it while we did and for how it changed us.
Perhaps 20 years before Paul was born, he would not have survived a week. Even today, in many parts of the world, this would be the case. Treating Spina Bifida right now is mostly dealing with the symptoms. Lesions are closed. Hydrocephalus is shunted. Tethered spinal cords are severed. Bladders are catheterized or augmented. Spastic muscles are botoxed. All different specialists working on their little part and making progress every year. Most of these treatments are recent developments and many more are being developed now for the future. Hydrocephalus was Paul’s biggest issue, and the majority of his surgeries were to fight it. Most of his symptoms were caused by it.
There are new ways being developed to treat and manage SB symptoms each year. Honestly, we don’t know a lot of adults with SB, yet. I don’t think there are all that many, but that is changing. I think Paul was born at the right time to have a chance for a full, great, if short, life with us. Thinking about it this way makes me feel like the 15 years we had with Paul was a gift to be celebrated. Paul was lucky to be born when he was, and we were lucky to have him for as long as we did. I don’t want the loss of him to ruin that part.