The Guilt is the Worst

No matter how many times I have been told that there was absolutely nothing that I could have done to prevent the death of my son, Alex, I still conjure a way in my mind that I am completely responsible.  I should have looked in on him, I should not have taken a bath before I went to wake him for his appointment, I should have known that he was dying (if I was a good mother, that is), or any number of reasons that it was me who was at fault for his death.  The fact is that he was very sick and had spent the majority of his life in unbelievable pain.  

I learned today that just weeks before he left this world to be with his father, he told his favorite uncle that life was getting too difficult for him.  He said that Alex told him that each day was a struggle, the pain (emotional and physical) was escalating and he felt he could not make it for much longer.  

I am able to look back and see that the choices that he had been making in the recent years really weren't for him.  No.  They were for me.  He had asked Manuel and I five years ago if we would allow him to die.  What a horrible thing to hear from your sweet 25 year old son.  After a few counseling sessions, we were able to go to him and say that we would support whatever decision that he made.  Shortly after that he met a woman and fell in love.  Now he was willing to do whatever it took to stay alive, for her.  She may not realize it to this day, but she gave me a miracle!  I had five extra years with my son because of her.  

I suppose that what this means is that my guilt is unfounded.  He was a sick man who was going that morning of his death to an appointment with a surgeon to confirm and set the date for one more surgery that he did not want.  After all, his wife was no longer with him, he was living at home with his mother, unable to work, unable to play his beautiful music, and his mind and body were failing him.  I believe that we all have the ability of making a choice about when we die.  How many times had I seen it as a nurse?  A family member would stay by the side of the dying patient wanting to be there at that time.  But, it is the precise moment that they leave to get a cup of coffee or go to the chapel that the loved one takes the opportunity to leave his earthly body.  My dear Alex was no different.  He knew that he did not want to disappoint me by declining the surgery, but he did not want to go through anymore.  It was no coincidence that he died that morning.  

I also believe that the process of dying is a very private and personal one.  If I had come in at that time to check on him, to remind him of his appointment or to heed a motherly feeling, things may not have gone as they were planned to go.  

So, there.  With all of the guilt and myriad  'what if's', I was not to blame at all.  It was his time.

Now I will wait while this knowledge slowly flows from my head to my very broken heart.  

Alex' one last gift

Alex had a special talent, a musical talent. Manuel and I never could figure out where it came from because neither of our families had that gene running through them. But, here he was, this musical genious. He taught himself how to play the piano at a young age.  By the time he was in fourth grade he wanted to play the clarinet.  I did not even know what a clarinet was.  We bought him a small plastic one thinking that this wouldn't last long.  Little did we know that he would grow into many beautiful and expensive clarinets, saxaphones, and guitars.  Music went through his head twenty-four hours a day.  He was accepted into the Boston Conservatory when there were two chosen from across the country.  He stayed for three years even against the advice of his doctors, both here in California and there in Boston.  He was getting sicker and sicker.  Finally he came home for a Christmas vacation and was worked up for a surgery.  It was a very difficult surgery with a long recovery.  It was not long before we were well aware that this second surgery had failed.  Now the doctors had no choice but to remove his esophagus.  I could hardly believe my ears!  But, he assured Alex that he would be able to play the clarinet as well as before.  He followed the advice of his doctors and his parents and went through the surgery.  He was never able to play the clarinet again.  After the pain and frustration throughout the recovery, this was a devastating realization.  Eventually he accepted things the way they were and found a new love, computers.  He never gave up playing the piano and guitar.  When he was away, I missed hearing the music in the house.  He later became sicker and came back to live with me.  By that time his illness had begun to attack his mental faculties. I remember one day when he sat down at the piano, opened the book, and realized that he did not know what to do with his hands or what the notes meant.  My heart broke for him when he came and told me, "Mom, I can't play the piano anymore."  What a sad day when such a thing of beauty in your life is taken from you.   

Then, one day a few days before he left this earth to be with his father, Linda and I were in my room when we suddenly heard this amazing music coming from the living room piano.  At first I thought it was a radio or something, but I soon realized that it was Alex playing that piano like an angel!  I know that God gave me that moment to hear him play one last time.  Thank you God.  Thank you Alex.  That was the most special gift!

January 11, 2008

It was just two weeks before I would be reliving that day three years ago when I was spun into a whole new world where I found myself living someone else's life. It is worlds apart from the one that made sense, brought a smile to my lips, and within was found peace, security and love. Here, in this place that I reside, is devoid of these elements that were so necessary and abundant in my world with Manuel.
Since that day in 2005, it has effected every one of my children in a different way. The picture that I posted of my youngest son last year allowed all to see the devastation it had brought to him. Alex had always had health issues. Yes, rather serious ones. His life was filled with hospitals, doctor's offices, surgeries and procedures. Nothing could ever keep him down though. He experienced anything and everything that came his way.
We had an appointment on January 11th with yet another surgeon, one more of a stream of physicians who believed he had one more answer, one more surgery, one more procedure, one more pill that would make him "better." Alex' health had deteriorated drastically after the death of his father. When he reached the weight of 107 lb., there was a permanent G-Tube placed. This was after he had had two PIC lines that ended up with Infections and clots in both, besides no weight gain. Now he was being told that there may be a possibility for him to live a "NORMAL" life, without a tube to nourish him. He would be able to chew and swallow like the rest of the people in this world. But there was a price to be paid for this normalcy that had alluded him throughout his life. That price was another surgery that may, or may not, be successful, that would be extremely painful and most likely put him back on the narcotics that he struggled so hard to take himself off of just one year ago, and the recovery period would be long and difficult.
This was a decision that only Alex could make for himself. We had just spent two weeks in Oregon with his sister Crystal. They discussed this and he was leaning toward a yes answer. But, now it was January 10th, the day before that appointment, and things were changing. He didn't want to fill out the necessary papers that were sent online for the appointment the next day. I did it for him while he sat on my bed answering the questions that only he would know. I must admit that I wanted this for him so bad. I really believed this doctor when he told us that Alex would not need the tube, he would eat normally and live a long life. I had to believe it. How could I possibly lose my baby? We had worked for the past thirty years doing whatever it took to keep him alive. I couldn't lose him now!
Well, after the papers were properly answered and printed out, I told Alex to get ready and I would take him to the Hospital ER for his severe shoulder pain that he had been using "Icy Hot" for over the past three hours. It was 10:00p.m., not unlike most of our trips to the ER. What was unusual was that they took him immediately and put him on the "Fast Track". This was the first time we had this experience. It was not long after that the doctor came to examine him and prescribed a pain medicine. Most everyone knew Alex there. He was what we in the medical field call a 'Frequent Flyer." He came in for severe abdominal pains due to adhesions from the past five surgeries, severe left shoulder pain which was explained to us as residual referred pain from the esophagectomy, and his common bleeding from the esophacolon (as Alex called it) with the huge ulcer at the anastamosis. So we said our hello's to the nurses and physicians that came by and recognized him. His nurse that night was a gentleman that had taken care of Alex many times before. He came in promptly and gave him Dilaudid 3 mg. in the right deltoid. This was usually an amount that would work for Alex' shoulder pain, but tonight it did not touch the pain. We both thought that it could have been because it was given IM instead of IV as he usually had it. So he was moved to another room where he would be more closely monitored and was given 4 mg. of Dilaudid. After a few minutes, he was resting and falling asleep. Finally, he was out of pain. My mother's heart could rest too.
Alex was released with all of the mandatory instructions and, as is our custom, we followed this ER trip up with a visit to his favorite dining establishment, Denny's. He wasn't able to swallow, so when I was finished he packed his food up and we went home. He was tired, happy, talkative, and beautiful. He hugged me tight and thanked me for always being there for him. He told me how much he loved me, and I told him that he was the BEST. It was 3:00 a.m. and I told him that I would wake him for his appointment in the morning.
The alarm went off and I went to his room to wake him. He wasn't answering me. I opened the door and went in calling his name thinking that he was sleeping very soundly. Then, there I was at the side of his bed looking down at his lifeless body. He felt cold. His lips were blue. My worst nightmare!!! I slapped him, I yelled at him, I tried thumping his chest. Nothing, nothing would bring life back to him. I called 911 and tried to follow all of the instructions. I was hysterical. This was not my patient at work. No. This was my baby, my youngest son, my darling boy. I continued doing the chest compressions and giving mouth- to- mouth until the paramedics arrived. There were a few times that I believed that Alex was breathing. The fact was that he had been gone for three to four hours before I went to wake him up. There he was. My beautiful, beautiful boy, wrapped in a white sheet. I sat waiting for the police, then the coroner. Nothing made sense to me. Could this be real? I kept thinking, "Patty, how are you breathing, how are you walking or talking, how are you staying alive?"
Now, this new world is spinning again. I don't no where I will be. I don't know who I will be. I don't know why I will be. But, my journey began once more on the morning of January 11, 2008.