Tonight I had the realization that Alex was gone at the scene of the accident. I was reading about the different parts of her brain that were injured. I did this after hearing about another woman in a coma from being hit by a drunk driver. When I hear about other people going through this experience, I relive what we went through with Alex and my other daughter, Landria. I have been in a lot of denial about the extent of Alex’s brain injuries. Diffuse Axonal brain injury. Her mid brain was completely gone. Her Reticular Activating system had holes of dead areas through out, her pituitary gland did not function, her Basal Ganglia was damaged, she had damage to the of optic nerve pathway to her left eye. I know there was more, but that is what I remember. When brain cells die, they do not regenerate. I did not know this. When they first told us this, I thought I would die. I ran out of the meeting and locked myself in the bathroom. I could not handle hearing she was not going to come out of this. She would never walk again, she would never feed herself or be free of some kind of life support and she would never wake up..she would be in a persistent vegetative state.
After my sudden departure from the meeting, I took a deep breath, and told myself, I had to go back to the meeting for Alex. I had to keep fighting for her. This is when Neurology got involved. Her Trauma Surgeon kept them at bay to give us time to be ready for what I believe he already believed would be the outcome. In the meantime, I asked that he consult with Doernbechers Children’s Hospital in Portland, a hospital in Chicago and the East Coast. Three Neurology opinions later, besides the consults, we took her off life support. I am shattered right now. Reliving and having the denial lifted is horrible. Denial protects us at times.
This post is disturbing and hard to write, so I’m sure hard to read.
More later..hopefully not so dark.
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.
As I follow the young man in Good Sam. ICU, I have flash backs. He is having his trach and feeding tube put in tomorrow. When you had that surgery, I didn’t realize it was because it was because they predicted you were not going to wake up anytime soon if at all. I know they don’t know that either. They don’t know all the agitation can mean. I am reading between the lines. I am also staying away and keeping my mouth shut. At first, I was a bit crazed to find a way to help. The fund raiser has been productive. Someone put an ad in the paper. I wish there would have been an article asking for prayer, letting people know what happened to you, Landria and Rylan. Not for money, for validation.. I want everyone to know. Is this selfish, unusual? I think I want to carry your memory, I didn’t want you to be forgotten. I want people to know the burden Landria carries and how broken she is. I haven’t done very well with that. I have been upset, mad and unforgiving.
I am also mad at the lady who was in front of you driving 20-25mph in the fog without flashers. I think it is disgusting she was gossiping about the speed Landria during to pass her, when it was to plow into her.the first thing she said to her dad as she was very out of from all the drugs was why were they stopped? She thought that car was stopped, she was not passing, just to pass her.
I will finish this entry tomorrow. I decided to end this entry where I left off.
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.
It has been almost a year since I have written on my blog, Mother Of an Angel. It has been a very difficult year. Life isn’t any easier as more time has passed. I have become resigned to the fact that my pain is part of my existence, and it may not ever be any different. I have a glimmer of Hope that I may also be able to also allow more in my life to coincide with this pain.
Two days ago I found out that an acquaintance of mine has a son in the same intensive care unit as the one Alex died in. He was also in a car accident. He has severe brain injuries as well, but am not sure of the similarities other than that. Brain injuries are unique to each individual trauma. I learned that the hard way when Alex was in a coma. Friends with good intentions told us story after story of the people they heard about who woke up. What we didn’t know until almost the end was what each part of her brain was not only damaged, but gone, not coming back. I always thought the brain was miraculous and could heal itself. Yes, but not literally..brain cells do not rejuvenate or heal, but the brain tries to make new pathways to take over the job the dead brain cells cannot do any longer. What I didn’t understand was that Alex’s midbrain was completely disconnected due to the tearing and shearing of her brain during the accident. That was only one problem, but enough to make it impossible for her to ever live more than in a persistent vegetative state. I have had a lot of denial about this. I have wanted to believe and fantasize about the millions of possibilities that could have saved her. I have held myself completely responsible, and beat myself almost to death emotionally, on a daily basis for almost two years. This has been the natural course of action and my process. I wish it wasn’t, I wish people; therapists, friends, my other kids, my sponsor, my dad, strangers…telling me what a good mom I am, how strong I am, how hard I fought for and how she knows how much I love her..I wish all of that could have made these last almost two years different. Not even my other kids’ pain has been able to penetrate my shield of pain and self-hatred. This other mom facing this very real, very horrible unknown fate of her son has somehow been able to penetrate my shield enough to get me back here to write this. I pray her son has a different ending than Alex. I hope her fight is to help him rehabilitate and end at home someday.
A question was presented to me a few months ago…would it have been better for Alex and her family/friends to have lost her at the time of the accident or the way we did. I personally feel that I am glad we got two more months with her. I know that is probably selfish on my part. There many things that are more difficult about this. I still have flash backs of all she went through and how it felt to watch and feel so utterly helpless and powerless. I also remember the Hope we felt and the research I did and the writing, trying to find anything we could to save our girl. I was and am still so angry and disappointed that no amount of money or amount of prayer could fix her. And we had to make the decision to keep her alive in a vegetative state or let her go be with God. I Think either way it was spun, we were effed. This young girl who was killed in a car accident last night, almost a year after Alex and Landria’s accident, brought a lot of these questions back up for me..not that they ever been answered. I lost my mom suddenly, with no time to say good-bye and felt a huge shock that I still struggle with. I think about this girls’ parents, and how they did not have any warning or time to say good-bye. It makes me so mad! Why do so many people go through this. All I can say is make sure you hug your kids and tell them you love them. When times are hard, think of the parents who would take that hardship in a minute versus never having anything, good or bad, with their child again. Yes I realize there have been a lot of depressing posts from me about death and accidents, etc. since this all happened. I just hope if they bother anyone they will just delete me as a friend. Totally better than me wondering why you don’t talk to me anymore or give me a look of pity. This may make people feel more removed from this happening to them,, like it is contagious, but it won’t. I am just a mom with a broken heart trying to find a way to survive. FB is an unconventional place to do this, but it has worked to a certain point for me. I don’t know the answers, I just know I am sick and tired of the pain, my kids’ pain, and to know I can’t really help anyone who has lost a child. The only thing that will make it okay is to give their child back…