Bittersweet

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I Have always considered myself a skeptic about the after life. Looking back on my childhood, I wonder if that is true. I believed in ghosts and spirits, which caused me to spend a great deal of time being afraid as a child. Since my daughter, Alex died, I have been desperate to believe she isn’t really gone. My intellect constantly battles with my spirit. There have been many incidents and signs that she is near by.

Two days in a row, there was a white feather on both shirts that were freshly laundered at different times. I know the feathers weren’t there before. I always say hi to her when this happens. I picture her by my side. Today, I am still in my robe, as I feel such deep sorrow and pain. I miss her so very much. It feels like all the chapters of her 17 years got ripped out.

The only thing I know, is that the intensity of these feelings will pass. I want to continue to receive signs, even if they are just random coincidences. Often, memories and signs are painful, as well as a gift. I will never have the desire or ability to forget her. My love as her mother, will always be a part of my soul. I love you Alexandra. 💕

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More Research and Clarification

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imageToday, I spent a couple hours doing some research about the areas of Alex’s brain that were damaged or gone. I believe I gained a different, more clear perspective than what I had before. The explanations that we were given were vague and simplistic. This was all I could handle at that time. I have spent these last 21 months ruminating over all the details of Alex’s’ injuries and all her hospital journey entailed.

I was able to understand why the doctors told us she would never walk, talk or feed herself. She had a thirty percent chance of gaining minimal consciousness. This means that she may show some sign that she is in there, but not communicate. Even then, it would be vicarious. I remember the specific trauma team meeting when we got the results of the first MRI. Her trauma surgeon drew a diagram of the brain to help us understand what he was about to show us on the MRI. He explained that the dark spots were actually parts of the brain that were gone. He showed us her Reticular Activating System (RAS), which was severely damaged. It had little holes scattered throughout the RAS, which is so small,yet so crucial. The RAS is responsible for communicating with the frontal cortex to wake up, so any damage decreases  a coma patients’ chances of regaining normal consciousness. With the amount of damage her RAS had, it was probable that she would never wake up.

The next section affected that he drew out was the midbrain. He said the section down the entire length of the middle was gone. I remember asking him what he meant by “gone”. He then said he meant it was dead, not coming back. That was when I finally understood that brain cells do not regenerate or heal. He explained that without those two very important parts of her brain, we were facing the reality that this may be as good as it was going to get.

That wasn’t all of the bad news though. Her Basal Ganglia was severely damaged as well. The simplest way for me to remember what that could mean is that people with Parkinson’s, Tourette’s and Huntingtons Disease have damage in the Basal Ganglia. Alex’s hands already had the appearance of damage. This was from the spasticity of the posturing, which is involuntary flexing, wringing and clenching of extremities. I was able to find a medication through my research that they had not tried for this. It had optimal results by administering the medication, Baclofen through a intrathecral pump. That was not possible, so they gave it to her in her Picc line. She didn’t do well with it, so she didn’t stay on it very long.

When we had a meeting with the first of three Neurologists, he told us she would never wake up, talk, walk, feed herself. I flipped..I asked him how sure he was. He said he was 99.9% sure he was right. I asked him about his credentials. The trauma nurse interrupted and told me I could go online and find that information. I got very upset with her. I stated that I felt it was completely reasonable for me to want to know where he went to medical school, did his residency and how many years he had been practicing medicine. After all, I said I wasn’t asking how many divorces he had been through. I was being asked to trust some doctor who was telling us that our daughter would never wake up. Alex’s trauma surgeon chuckled. I surprised myself, but I was advocating for Alex’s care, her life and her fate. Needless to say, we got two more Neurologists to meet with us to be sure.

The next two Neurologists were more humble and would not give us a percentage. In fact one of them had been my grandma’s doctor. They then joined the team of tweaking her meds to help with storming. They reintroduced Baclofen to her regimen. I say that because it made me wonder about them not being involved sooner. After all, I am the one who suggested adding Baclofen after reading about it. Her mother, not even in the health care industry. I believe her trauma doctor did not feel we would do well with knowing the truth any sooner than we got into Alex’s prognosis.

When my dad came the day after the accident, Alex’s trauma doctor, who was in charge of her case, showed us the second CT scan. He had tears in his eyes as he told us how sorry he was. I do not doubt he did everything in her best interest and tried to give her time to show us how much she was capable of improving before giving an MRI. When I asked him to get second and third opinions from other larger hospitals, he did. That is actually why we had a second MRI, as Doernbechers Children’s hospital requested it. So I know we were in good hands. All the other doctors he consulted with confirmed he was doing everything they would have done. I do believe Alex would have an MRI after about a month. I do not second guess his decision to wait.

I am finding a huge need to write about this. There is so much more I want to write about. So many experiences and details. I hope someday my writing will find itself to another mom like me, desperate for answers on how to save her child or loved one.

Fundraising Memorial in Honor of Alex

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I appreciate all the hard work people put into the fundraising event in memory of Alex. There was a lot of time, energy and money contributed this by many people. It was difficult for me to be there, only because it was one more way of making this hit home…this was going on to raise money for a scholarship in memory of my daughter, who is Heaven now, and she will not graduate with her class, or go to college or have a family of her own. So many things run through my mind in an instant when the grief hits. It is amazing how a person can have so many emotions and thoughts at the same time. 
I felt the love during this event..love for Alex..people really care about what happened to her, and were honoring her in a way that can hopefully live on. Thank you to all of you! Even though it was difficult for her family to attend or participate, it means a lot to us that this group of people were willing to work so hard to honor Alex. She certainly deserved it. I thank the people in the community, and the individual people, who contributed raffle prizes and donations for the event as well. I have never met such an incredible young woman, and the world is a lesser place because of her death
Making progress with not blaming God..still haven’t reconciled what I believe, versus the beliefs I had prior to this happening. It is a process, and a time of searching and seeking, which is okay to some degree, as it gives me a type of direction, instead of just being so engulfed in the pain that comes with this type of loss. Some days it is more difficult than others to focus on this part of the journey..I just take it as it comes. I try to pick up my book and study it so I learn, even if I can only manage to find one morsel of new information to try to piece together a new belief system and understanding of how the world works on a Spiritual basis…I accept that. 
I really enjoyed spending time with some of my closest friends at the event. We sat in the basement discussing some of what I have been learning, and some of what they have experienced. I have to be careful not to try to push what I am learning on to other people. Discussing what I am finding helps me to process, and figure out whether I can really adapt any of it into my new belief system or not…
Eli got to get up on stage and sing/scream with one of the bands. I know he really enjoyed it, even though he can’t hear very well today. Hope was able to attend, as we traded off, and I brought Landon home. Rob was there for a bit, and Landria is on her way back from Vegas, so she was not there. Thank you again to everyone. 
More later… Continue reading