I see the journey the path I have taken like the wake of a great ship.
I plan and think about my blogs well in advance. They are emotional sometimes savage in their ferocity and at times I have taken breaks from writing. My doctor wanted me to write a book about my experiences with vision loss because I know more than most of her patients. I can describe everything they are going to go through, good and bad. I have always thought it would be a horrible book so I have been trying out this format in a blog format just to see what is there. It has been more cathartic than I ever thought. I don’t pick the stories I write to entertain or tell funny stories or to seem clever. Honestly I have been writing for me, because there is not much future for me and what there is will likely be darker than what I am going through now. Sifting through memories and writing about this while discarding that has been difficult. I have worked with hundreds of kids and could have written about any number of them. I have chosen though to write about the patients who gave me far more than I ever gave them. It has left me tear streaked at times and I have cried while watching television or swimming or any number of activities. It builds up and bursts like a dam. I almost always cry while I am writing. This is all part of my soul and sharing the deepest parts of your soul is never easy. I don’t care who you are.
There is a movie I like quite a bit. Its an action movie with predictable story lines, good old fashioned violence, actors with funny comebacks. The Last Boy Scout stars Bruce Willis as a former secret service agent now down on his luck as a private investigator hired to protect the girlfriend of Damon Wayans who is a former NFL star banned from the game for gambling. It is not an academy award winning film, its not great like Commando which should have won best picture and best actor, Arnold was brilliant. It is an easy to watch movie. One of my favorite parts is when Wayans is drinking he offers up a toast to Alex the accountant, to Alex the astronaut, to Alex the pediatrician. Bruce Willis when he hears the toast to Alex the accountant asks if his accountant’s name is Alex. He replies, “no but he could have been.” Wayans then goes on to tell the story that at one time he was married and his wife was carrying his baby. So one Sunday while he was playing his greatest game as a pro a drunk driver hit his wife and killed her. He says, “But Alex my son lived for ten minutes in an incubator. He had time for one dream and then he was gone.” That line gets me every time.
In 1994 while working as an intake coordinator I got married. My wife, Celia, was older than me and she had three kids one an adult from a previous marriage. We had already had a miscarriage. The news was pretty exciting to me. I was going to be a dad. I will say I knew nothing about pregnancy or anything so I followed the lead of my wife who was pretty experienced. She told me she would likely end up on bed rest for pregnancy induced hypertension and would probably not go full term but these things she was not particularly worried about. I thought it was strange that she was buying maternity clothes at two months. She got big fast but her answer was that every pregnancy was different. At thirteen weeks we had an amniocentesis done for those dreaded words advanced maternal age which I thought was funny. My wife did not. After the procedure on the way home my wife informed me that she was having quite a bit of leakage. The post procedure instructions said that a little was normal but to call if it was leaking an abnormal amount. I told her to call and thus I learned that my wife was not a good patient. Being a nurse, she knew everything and said that all they would tell her was to rest and monitor which is what she proceeded to do. A few hours later all the leakage had stopped.
I will say that it is incredibly exciting to have the first picture of your kid be chromosomes all lined up with the words normal healthy male written. We were going to have a boy which was good since we could not decide on a girl’s name but we knew a boy would be named Alexander and we would call him Alex. From even before the amnio we had a nightly ritual when we got home from work. My wife would lay down and I would lay cross ways my head resting on her abdomen. There I would tell our baby stories, read my favorite children’s book Go Dog Go and once even told a dirty joke. I was so excited so happy.
In the twenty first week my wife took some time off and drove to Mississippi to see her parents with her youngest and her oldest son. I stayed behind although I cannot remember why. That Sunday I had a friend over and we grilled steaks, listened to blues music, drank a few beers and smoked a couple of cigars. We talked a lot about fatherhood, our own dads and what being a dad meant. That night I sat on my back porch and looked up at the stars in the night sky. It had been such a great day and I was so happy that I forgot all about that magnifying glass.
At around two thirty in the morning I was awakened by the phone. It was my mother in law Polly with he thick Mississippi accent that I loved so much. At that time, you know its not good news. My wife Celia had gone into labor and had been taken to the hospital. The baby did not have a heartbeat and they were going to induce and then do a d&c. I am glad that it was Polly who gave me the news. There is not a kinder person on the planet and she was gentle and supportive. She told me to stay put and would call me later when they knew Celia was okay. I got up and packed a bag, put gas in my car and then looked up flights. I then unpacked the bag paced, walked around the block packed again loaded my car, unloaded my car. I honestly did not know what was going on. Around dawn Polly called me back and told me that Celia was fine and would call me later. She wanted me to stay at home, driving or flying up there would not help. Of course it would have helped me. When it was late enough I called my job and broke the news to them. It was devastating and I was dazed like a punch drunk fighter. Celia called me and told me that she was fine. I wanted her home but it was going to be a couple of days before she could travel. They already had a full car and driving to Mississippi would not solve anything. That night I finally fell asleep only to be awakened by my own sobbing. It was one of two times that I have actually sobbed in my sleep the second time when my mother died. I cried the rest of the night.
A couple of days later Celia was home and we spent two hours laying on the bed just holding each other. The first words she said was telling me how hard it was to hear heart rate monitors all around her and not having one herself because Alex had no heart rate. She said that the doctors told her to wait a month before getting pregnant again. I wanted to wait but she made me promise that we wouldn’t and so I agreed.
Over the course of my life I have met people with a grief so great, a loss so heavy that it never really leaves them. Time is not a healer and I hate it when people say that. It is not. Time is a buffer that gives you distance between the pain and the now. Some wounds never scar over so grief never leaves us and instead the loss leaves a hollow aching spot like something is missing. I cannot look into a night sky and see the stars without crying, without remember a son that I never even got to meet. I don’t know if he knew my voice if he knew I was happy laughing and that Go Dog Go was the greatest book ever and Command the greatest movie. I would like to think it meant something.I would like to know that he knew tat he was loved. In the end I don’t know if Alex dreamed if he was afraid at the end, if he knew anything at all.
We spent a few weeks wondering why and asking doctors why. I was sure that it was the amnio that the baby was put in too much stress from the loss of so much amniotic fluid. We got a bunch of maybe so’s and maybe not’s and at the end of the day it did not really matter because it did nothing to bring him back. In the end I knew that it was a magnifying glass.
To Alex the astronaut, to Alex the Angel.