Broken Promises

Chapter 21 - You Die One Last Time

Late June, 2009

I had made the decision to withdraw care the next time you needed hospital support, yet it seemed so distant. It was like agreeing to visit the in-laws next Christmas. Anything could change before then. You had not been in the hospital for so long, that it could be a year or more before this was an issue. I was comfortable and at peace with the decision as a thought, but I really did not see it playing out for a long, long time. I had no idea that in just a couple weeks back from my trip, things would happen that would make me question the decision.

About two weeks after I returned, you were not feeling up to par. Things were just off a bit. Breathing was a little labored, temperature a bit elevated as was your heart rate. You did not seem in distress at first. You just seemed a little less yourself. As the day progressed, it was clear that you were sick. It hit me what this might mean, but it did not feel real. The nurse made the suggestion that we take you to the hospital. She did not know what this meant as I had not shared the decision with anyone. Once the nurse suggested the hospital, I told her about the decision. We both agreed that you did need the hospital. That was not in question. I cannot recall if I drove there or called the ambulance. I am pretty sure I drove home after things were all over, so maybe I drove. Still that is confusing as I think your nurse drove back herself, or maybe she did not go to the hospital with us, just details that are lost.

I called your mom because I had to have her signature. She arrived and gave consent. I did request that none of the family besides her attend. Most respected that decision. After the decision was made and signatures were collected from your mom and me, we made the final calls to family.

How do you tell another that you are ready to end your child's life? Why is it so simple a task? "It is time to remove her ventilator. She has suffered enough." I do not the exact words I used. We were given no grief, no push back. I remember emailing my professor an update as it was the last day of the course and being told not to worry. Part of me appreciates the acceptance, part of me wishes someone would have hit me and told me to never give up on you.

I barely remember the form. As I signed it, I thought "everything is about to end." There was a weird feeling of peace with the decision and the signature. I do not really know how to explain it. It was like giving you CPR. It seems so easy in hindsight. Just kill off the feelings, sign the paper, kill your child. Ten years gone with the swipe of a pen. You are erased from this world as if you never existed. That is all it took to lose you forever.

June 30, 2009

After everything was signed, your ventilator was removed. It was so quiet without it. It was a surreal experience standing by, waiting for you to die when so much effort was spent trying to keep you alive. The nurses would come in periodically to give you some morphine to alleviate discomfort.

It does not always happen like you see on television. It took several hours. You were breathing until you could not breathe any longer.

I told you that it was okay to stop fighting. Disgusting words after telling you to fight with all you had for the last ten years. It takes evil to tell your child to let go and die. It takes someone who never deserved you in the first place. And then I watched you die.

The last words I spoke to you were a lie. "You are going to be okay. I promise you." And then you were gone, and with that the last piece of my soul left with you. June 30, 2009.

After the others in the family left, I had time to be alone with you. "Stay as long as you would like," the nurse said. You and I had our last conversation in those moments but not with words. There were no words left. There was nothing left. My family was now fully dead because I could not save it. Because I chose to sign its death.

My strongest memory is walking down the hall away from you. That hall was a million miles long. I begged God to kill me and let me be with you but even in this He ignored my pleas.

The problem when your child dies is that you do not. You keep on breathing no matter how much you wish you did not, each caustic breath ripping you to pieces from the inside out. And you learn what it is like to live without a soul. To live forever empty, just a meaningless shell. You are finally fully nothing.

When I came home after you passed, I was so emotionally confused. My reason to exist for the last ten years was gone.

I shattered the bottle of anointing oil shortly after I got back home. It had become vile to me. It had been no more than a placebo, just another lie.

I had to get your medical equipment out of the house as fast as possible. Their presence was suffocating me. I made the calls for the company to come get them as soon as they could.

I threw out all your perishable medical supplies. Their existence angered me to my core. So many years of suffering. I ripped up what I could and stuffed the rest into garbage bags. It felt cathartic in some ways, and vile in others.

It took all I had not to burn all the plush toys you had in your army. They had failed you as I had failed you. The books I had for you were thrown out and then put back. In the end I believe I asked my mom to take them and donate them to kids who needed them. They just had to go. I am not sure if your original Cat in the Hat was spared or not.

As I threw the last pieces out, I felt an emotion that repulsed me. I felt relief. I felt relief that my little girl was ....

Some events in life hurt you so bad that pain loses its meaning. Kissing your icy, cold cheek at the funeral home. I do not know how to describe it. You were now the same ghostly white baby who had been pulled out on the day of your birth. You had come full circle but without meaning or purpose. You had been allowed to suffer while getting nothing from your life.

When I look inside me to see what is left, all I see is the darkness.

Since all the family was out of town and I knew I would not stay in Georgia, I chose cremation. I despise graves. They lock you into a geography where you must travel to grieve in a public area. It is impersonal and lonely. I could never leave you alone in the cold ground. At least with ashes, you could always be near. I came back one last time to pick you up.

Your papa has been a master wood worker all my life. I asked him to make you wooden box to keep your ashes in. It was beautiful. Now you sit on my bookshelf. That shelf belongs to you. It has a few keepsakes that remained after the purge. You and they all sit among my most treasured books.

I didn't have a funeral for you. I've never cared for the idea of a funeral where you sit beside the casket and you cry on demand as people walk by. You have to cry just the right amount to avoid being judged. Too much or too little, and you become the topic of whispers. To me grief is such a personal process. How one chooses to grieve is no one else's business.

For me, I mostly process my emotions through my GI system. In other words, strong feels can make be very nauseated. It just didn't make any sense when all your family was so far away. We would just grieve in private. I lived life privately taking care of you alone and that was how I chose to mourn you.

A few days, maybe a week, after you had died, I was at home, alone, and just utterly lost in a void. The front yard was full of pine trees. I was walking from the mailbox to the door when a huge squirrel fell out of a tree and almost onto my head. It just kind of looked up at me as if saying "what the heck just happened?" At that moment, I just stood there staring at this big fat squirrel thinking "I don't know little guy," and laughed for the first time in a long time. In my mind you chucked a squirrel at me to get me to smile. In an odd way, it allowed me to feel close to you again. And then he left me too.