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. 💕

Break in Denial

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Alexandra Makenzie Malcomb

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.

When the Waves Hit

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Beautiful Angel Girl

Beautiful Angel Girl


It has been two years, three months and 23 days since Alex died. I don’t know why I continue to be surprised when the “sneaker wave” hits again. This is when something triggers the enormous pain from knowing in my soul my daughter really did die. Most of the time, I trudge forward in this new reality with a barrier of fog that softens the shards of pain.

I have thought about my belief or non belief in life after death. For now, I’m not sure whether I can wrap my mind around this, but I want and need to believe Alex isn’t just dead. I need to believe she is happy and safe. I want so desperately to see her again. I want to make her proud of the way I am carrying her memory and legacy forward. She was sweet, yet feisty. She expected people to be the best they could be. I don’t want her to ever be forgotten.

We are building a memorial garden for her. I will be getting married there this Summer. I am blessed to have found a genuinely wonderful person, who I wish so much could have known Alex better. The happiness is infiltrated with grief and sadness. My fiancé has been very patient, understanding and supportive. I know Alex would approve. The guilt has been difficult as well. How can I be happy when I am so very sad? I have realized that grief, sadness and happiness can co-exist.

My other kids are doing okay. My son, the youngest, is in a grief group, which has been tough for him. I can see the benefits though. The kids have protected their dad and I from their grief. As we more time has passed, this has started to change. My oldest, who was the driver is doing okay. She has lifelong injuries from the accident. She is bringing my grandson to visit soon. He was also in the accident.

When the wave hits, I have found it is best to ride it out. When it hits, it feels like it will kill me when, but resisting it by stuffing the pain has its own set of consequences.
More later…

Another Family’s Tragedy

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imageAs 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.

Release the Pressure Valve

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imageI started thinking about how it must have been to be at the scene of the accident. A man pulled Alex out of the car, as he either didn’t find a pulse or was unsure if she was breathing. You see, I have been too afraid to get a copy of the accident report. I did leave a message on Facebook for the man who performed CPR on her. At first, Alex’s‘ dad was upset that someone moved her, as she had a broken pelvis and sacrum. He had to use his best judgement in a split second, during what must have been terrifying. Alex was whisked away to the hospital first. Landria was trapped in the car and Rylan was put in the ambulance. It took quite awhile to cut Landria out of the car. Later, Landria told me that when she regained consciousness, she kept calling out to Alex, with no response and Rylan was screaming. Someone came to the car and Landria was able to scream out my phone number. I will never forget that horrible phone call.

I have flash backs of all the details I saw first hand and envision the details of the accident. I do my best to push this all aside and do what is right in front of me to do. It has been almost two years, and I wonder if I will ever not do this. I think a lot of us underestimated the amount of trauma we all experienced from this. Having two daughters In ICU broken and twisted, ultimately almost killed both of them. One daughter in a coma, and the other completely broken into pieces. I remember feeling like I had to figure out who needed me most and when where and how to be. Thank God both of their dads were there. That is a blog entry in itself!

I really believe it is time for me to move on with my life. It is time for me leave this area. Geographic’s will not change what happened or my feelings of grief and loss. I do need to try to break out of the cycle I am in. I need to create new pathways in my own brain. This is a very real technique that can be used to break out of obsessive, plaguing thought patterns. Not to say it has to be what I am considering.

After writing this entry, I realized how much I needed to release these memories regularly, as they create a lot of pressure within me. I haven’t found a method to do this that feels safe. Talking about it with a therapist has been excruciating. It has helped me sort through the anger and resentment I have felt, and get closer to forgiveness for others. It is me who I have not forgiven. I believe that will be part of my journey until I die.

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.

More Reflection and Comparison

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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.