Thank you to Necole Stevens for this beautiful image/poem
This poems describes how I feel and think. Life is unpredictable for sure. How do we handle success and or tragedy? Do we let it cause defeat or boast about much better we are than those not succeeding by our standards? Maybe we just do the best we can to deal with however life unfolds. I have always been a survivor. I have overcome many hardships from the time I was a little girl. Not eliciting pity, just part of of my story. I have been called tenacious, which I take as a compliment. God made me the way he knew I needed to be in order to walk through what he knew would come. I have struggled with anger and self pity because of these things, especially losing Alex. I thought for sure I would be spared from a tragedy like this as an adult. After all, I experienced enough with my mother before and after her death.
Do I trust I am done experiencing tragedy and pain? No, I really don’t. I think that is why this post from one my fave pages on FB spoke to me. I struggle with believing I will rise above my circumstances so I can live the life I’ve always dreamed of. I want to use my education, travel, not live in survival mode.
My grief, depression and self loathing gets in my way with living the life I have always hoped for. I have been told by someone who tried to help me after Alex died, that I have believed most of life that I am inherently flawed. This has been a vicious cycle. My subconscious has been there hindering my every move. The solution to all of this? Healing Spiritually is a big piece of the solution I know that much. I will continue writing, being tenacious, and yes, struggling to find my connection with God again. It is happening very slowly. I talk to Alex like I used to talk to God. So that tells me I am still seeking a spiritual connection, a connection to my Angel daughter, who I miss and love so very much.
The young man in a coma may not be doing as well as they were thinking. So much hope, so much that is unknown and misinterpreted. In the early stages, I know I wouldn’t have been able to handle the full implication of what her fate was. I needed to have Hope and denial. The hospital staff had to tread lightly, as they knew how probable it was that she was already gone.
I remember when Alex started storming. Her arms and legs started moving, so we thought she was coming back to us. Very quickly, it was obvious that it was the autonomic brain dysfunction. This is when all of her vitals spiked along with her limbs wringing and contorting uncontrollably. We didn’t even know what that meant. The nurses and doctors would try to explain what was happening, but I needed to research what was happening. I wasn’t sure if I trusted them or their skill level. After all, we weren’t in a large city. So I would go to the computers in the ER waiting room every chance I got. I remember thinking, as her mom, I could help her relax and stop posturing..boy was I wrong. It was all involuntary, she had no control over what her body was doing. The more we touched her, the worse it was.
Her dad and I became pros at icing her body to keep her temp below 101. Her temp had gone up to 106, and the nurses on that particular day were in way over their heads. When her Neurosurgeon told us he needed her temp. To stay below 101, we were like the ice fiends. We had a system down to an art. One day, a nurse wouldn’t let us do it. She poured alcohol all over her instead, but she failed to realize that wouldn’t work for this, as it was her brain dysfunction, not infection. I sat out in the hall bawling and raging. I had to have the trauma nurse paged to make this stop. If I could have punched out that nurse, I would have. If it were me now, I would have requested her to not be Alex’s nurse again. There were a couple who we asked to not be assigned to her a second time. I have to say, there were at least six nurses who were fantastic. Alex’s case was very complicated that required constant tweaking.
I am just reflecting as I can only imagine what this other m
I have all this information from our journey with her, but I am strugging with knowing how to use it to help this other mom. I know she has to discover what works for her. I want to tell her how I did it, but I cannot use someone else’s’ tragic process to help myself. At the same time, I could be very helpful. This gives me an idea of how hard it must be for the trauma teams. They have a better idea of how things may turn out, but have to not say too much. It is a fine line to walk.
I also have to realize that this young mans’ brain injuries are unique to his circumstances, and it may end up completely different from our situation with Alex. I would never not want him or anyone else to die or not get better. I have to allow my feelings of anger and regret that invariably come when someone is granted a miracle that Alex deserved and didn’t get. She was such an awesome human being. I miss her terribly.