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…

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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.

March 4, 2012

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Well, the weekend is coming to an end. I got out of the house for a bit today. Eli and did some yard work out in the sun, which was nice. I had company for the later part of the afternoon. A few friends and my cousins came over, as they are visiting from out of town. It was nice to visit and do a bit of crying, which I hate! I know that it is an important part of healing, but I am so afraid if Istart that I will never stop. It helps to talk about the last couple of months with people who don’t know the whole story, as I get a chance to process all that has happened. I have taken it for granted and underestimated the significance of what we have all been through. From the first discovery of the accident, to the ER, to the ICU, to regular floor for Landria, all her surgeries, rehab and more surgeries, to Alex’s Ventricular drain and brain pressure monitor being placed, her trachea surgery, being brought off the phentobarb, waiting to see if she would wake up, team meetings with doctors and nurses, process of trying to regulate the storming, CAT scans, MRI’s Mersa,
making decision about what to do, three Neurologists’ opinions and in the end death. Burial plans, service plans and the service itself. All the details in between those major points are so significant within themselves. The outcomes have been on two opposite ends of the spectrum. After sharing some of this with my cousin, it helps me to realize the powerful whirlwind of trauma and catastrophe we all really faced and continue to face. The effects of this have spilled over into so many people’s lives. So many of you, my FB friends have followed my posts through out this whole thing, and have continued to be supportive and encouraged me to keep posting..which is the only thing that seems to help me keep my feelings and thoughts from overpowering me to the point of being completely useless to anyone. I need to find a way to memorialize Alex, as I have been reading that this is what gives grief a positive way to channel and connect to the loved one who is gone. Finding a purpose to attach to so there is living breathing part of Alex that will live on in me is what I hope to find. I am so early in this process, and I know I cannot fast forward through any of it..I would really like to though. Thank you to my friends who are on my FB (and not) and my family members who have been so loving and supportive..even when I want to hide under my bed.
More later…

Alex’s 18th Birthday

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We made it through Alex’s birthday okay. My friend Jet suggested we take ballons to one of Alex’s fav. spots and release them for her. We went to Mary’s River and wished her a Happy Birthday. It was sad, but I felt it was a way to honor her turning 18. I never did hang out with her there, as she usually escaped the heat there when she was with her Dad. Since we have a pool, that is where we hung out during the Summer months. I am not even going to think about how that will be without her. I wish I wouldn’t have postponed our trip to Boston..we wouldn’t have been around for her to be traveling to school that morning. I know it doesn’t accomplish anything by wishing the past events would have been different to avoid what happened. I do believe that is not out of the ordinary when tragic things happen. I avoid driving down that road as much as I can. I have stopped when this first happened to examine the spot where they crashed..it gave me an eerie feeling, so I choose to stay away from it. Rob and Jeanne’ have to travel that road frequently, and I am sure it is difficult for them. I stopped over at their place yesterday so Hope could change Landon, etc. It was good to see Jeanne’ and the girls..I went from seeing most of them everyday to not at all. I wonder if being connected during such a difficult time brings all of that back for most people. It certainly can create a type of bond that is difficult to explain or describe. I am very grateful that Rob, Jeanne’ and I worked so well together to ensure Alex was receiving the best care humanly and Spiritually possible. I am not sure if I have shared that Alex was Baptized prior to her passing. It was a powerful experience, and I am so grateful that this took place. She was dedicated as a baby, but had not made the decision to be Baptized as a young adult. So many things she had not discovered for herself yet. I believe she is having the chance to discover so many things that we don’t even have the capability to do on Earth. This does bring some comfort, as I still have such a strong connection to her as her mother. She believed I was over protective..I probably was..I seemed to have a hard time allowing my kids to grow up, and trust that they could make it though their own life lessons. I know I am done yet! With Hope being a teen mom, there are many lessons yet to come. I have to continue to allow her to be the mom, and trust that she has good instincts. With having four kids, it is difficult for me to keep my mouth shut. Fortunately, the things I need to be quiet about are minor, or I would have to speak up. There is a fine line to draw in this situation. Being a grandparent is a joyful experience, but it also can cause a lot of worry..
Eli is about to start Track, and I think it will be a good distraction for all of us. He is here for the weekend, and I am so happy about this. I have missed him so much. I know he needs me right now, as he is so sad about Alex. We all are..Landria is doing okay physically. I know there is a long road for her with all the other aspects of this situation, and the changes and limitations she has from her injuries. I have to say though, she has healed miraculously. Such mixed emotions all over the board with all of this. I just wish so much that everyone would have survived this tragic moment. I don’t think losing someone suddenly or over a prolonged period make it easier either way. I haven’t had any kind of meaningful conversation since Dec. 4, so I guess some may have the perspective that we lost her on Dec. 5. Does it matter? I guess that is a Subjective answer, as everyone has experienced this internally, a bit differently. Those differences combined are why we all worked together to do what was best..we held each other up when each of us wavered in strength. I appreciate all the people, who have strong Spiritual Health that showed up to encourage us in that way. I have never prayed or been closer to God in my entire life. I must get back to that, and not blame God for not healing Alex the way I wanted Him to. He can handle this though, and I know He understands this. He gave all of us the strength to endure the process of losing her. Some of this is lip service, but it has to have a beginning, and I believe saying it out loud can start the process of reconnecting with God. I was concerned about this prior to her passing, that I would turn my back on God, the very entity that gave me the strength to survive the whole process of all the girls going though various types and degrees of medical crises. Well, this is turning into a book so…
More later…

Feb. 20, 2012

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After arriving early, Landon had to stay in the nursery the first night to be monitored closely. He is doing really well, even with some minor medical issues. He has a very big voice for being so little. He looks just like Hope did..lots of dark hair. He has to stay at least a few more days to ensure his eating abilities are in place. Hope is doing well with adapting to motherhood. She has really strong mother instincts.
Landon’s birthday is in between Landria’ and Alex’s birthdays, which were a week a part. Alex will be 18 this Friday. It is so sad that she is not here with us to enjoy the arrival of her nephew, Hope’s son. It feels like every thing is connected to my grief and sadness about losing Alex. I do not want to accept that is she in Heaven, as I want her to come back to be with us. It took me over 30 years to accept that my mom wasn’t coming back. I never grieved her death in a healthy way until I was in my mid twenties though. I just never wanted to have to go through losing a child..who would.  I am so happy about Landon, but so confused because it only has been 3 weeks since Alex died.  I know that she would be the awesome Auntie to him as she was to Rylan.  Eli and Rob have slight colds, so they had to miss being with Landon today. Hopefully, they will be better so they can come see him in the hospital.  Hope and Landon will probably get to go home by the weekend.  I know he will bring a lot of  joy to all of us who are so sad without Alex. I hope she is doing well in Heaven. I sound crazy when I say things like that, but I really need to believe she is happy and at peace. I still can’t believe she is gone and that she had to go through what she endured after the accident. I still have a hard time talking to God since she died. I needed him to cure her, not heal her by taking her. I know it is not his fault..I just wish I could understand why this happened to her, when there so many other crummy people still out there hurting people.