The dust has settled

I now get what they mean when they say grief comes in waves. But, I also think for some, or at least for me, it comes in chapters. Maybe for those who know the end is near, or for those who have witnessed firsthand the suffering their love one endured. Or for those who have felt the ongoing struggle of bad luck that life sometimes hands out to the chosen ones. The ones that pray for a break and ask for some sign that this is all worth it.

My first chapter began the minute I knew in my heart that this was the end. The feeling deep down that told me this was not the life Conley wanted, or deserved. That chapter started the day Conley was admitted to the ER after he stopped breathing. I remember that day clearly. It was a Monday, and we had just been discharged from the hospital that same morning. Conley was eventually placed on life support and discovered to have multiple lesions in his brain. While all I wanted was answers, in the bigger picture, the reasons for the neurological damage would not have changed the feeling I had. The feeling that day was different from every other time he was hospitalized. That feeling would not go away, no matter how many times I changed the story in my head. This time my heart knew this was it, but my mind was still trying to take over. That is when my first chapter of grief began; when my heart needed to convince my brain that this was the end. And boy did my brain want to win. But the heart prevails and knows the truth. My heart knew that the facts were not as important as accepting the truth that I would never see my son lucid again. 

Transitioning away from the suffering and toward a life of peace and comfort began the second chapter of grief. This was the time where I had accepted our reality, and I chose to enjoy my son, solely as his mother, and no longer needing to spend every waking moment advocating for medical intervention. It was just me and him. Me and him together. I was his mother and he was my child. No kidney failure, no dialysis, no cancer, no neurological damage, and certainly no chemotherapy. It was a time for me to celebrate his life and share his beautiful soul with everyone who loved him so much. Ironically, this chapter brought an immense amount joy and peace to my heart. The sadness and pain that we felt for so long were pushed to the background. I had plenty of time for sadness in the chapters behind me and the chapters to come, but this chapter was about genuinely and wholly feeling his warmth and spirit. Seeing and feeling the love for Conley brought many happy memories. Memories I needed to continue moving forward. I spent this chapter enjoying every second of every minute I had left with him; not worrying about the next crisis we would encounter.

Then came chapter three. I spent a good amount of time in this chapter. Feeling thankful there was no more suffering; that I was no longer being forced to witness my own child's pain and heartache. No more feeling helpless and hopeless. Relief that it was finally over and his new life could begin. Knowing deep in my soul that he was at peace. Anytime I felt sad or angry, I would turn to feeling thankful and absorbing the relief that I was not taking him to the doctor day in and day out to be stuck and poked at; to be given another medical label. Feeling relief that I no longer had to spend every single day and every single night wondering if this would be his last day, or what news we would encounter; or even if he would make it through the night. Living in a state of complete surrender, yet still fighting every minute of every day. Being on high alert; constant trauma - all done. Feeling thankful that I could finally breathe deeply and sleep soundly, or spend time at home with my husband and other child. Doing things I had not done in years simply because there was no time or energy. This was a good chapter. Ignorance really. I was "free" for a bit; I could do what I want, when I wanted, and how I wanted. But then when I was ready to "go" again; to get back on the grind and advocate and fight the fight with him, the reality that there was nothing to "go" for, and nothing to "fight" for, finally settled in. Now that my "break" was over and I had the chance to step away from the suffering and pain, I was ready to take on the world. And the realization of my world with him no longer there, ended this chapter. The sadness and heartache became too strong to focus only on the feeling of thankfulness and relief. And the shock is over.

Here I am now, in chapter four, still trying to understand this phase. There is a lot of sadness and at the same time, there is a lot of hope and fulfillment. I cry every day. Sometimes multiple times a day. Most of the time it is in the car, when I am alone. I never would imagine that being in the car alone would be such a trigger. I mean, it makes sense. I spent most of the past 13 months in the car going somewhere with or for Conley. He was the reason I was in the car every day and what was on my mind when that engine started. Driving to appointments or to the hospital, or picking up medications. And, he was typically in the car with me. Every day I was in the car with him. So, to get in the car, alone, without him, is possibly the most painful part of this chapter. For weeks now, I have cried every single time I have been in car alone. Every single time. As soon as that engine starts and I pull out of the driveway, the tears flow. There is no distraction when I am alone, except music. And we all know all music does is amplify the current feeling! So I just cry. 

This sadness does not stop me from getting in the car alone, because most of the time, when I am in the car alone, it is to go to a place of comfort. To see other people who bring me hope and meaning. To be with another community that keeps me going and does not let me hide in my tears. It is safe to say that most people do not know that I cry the entire ride to see them, because I am pretty good at pulling myself together before I step out of the car. But even if I did not hide it, I know these people would understand and accept it regardless. 

Although being in the car alone is likely the biggest trigger I have, there has never been a moment when I thought about not opening the car door and starting the engine. I think back to how many times I did not want to get in that car to take Conley to the doctor, or the ER, or even to chemotherapy. I always wanted to skip moments like that; but I couldn't. Because that is what my son needed to live. He needed daily care and life sustaining intervention, and he needed me to drive him there. So I pulled my shit together, got in the car, started the engine and drove. I drove to whatever doctor we were scheduled to see that day; because that is just the way it had to be to keep putting one foot in front of the other; to get to a bigger goal, whatever that was at the moment. And what I realize is just like he needed that daily care and medication intervention to live, I need the people and the things on the other end of that solo drive to keep me moving forward; to keep me putting one foot in front of the other; to get to my bigger goal. Whatever that may be. I am still not sure what the goal is, but what I do know is that it is not sitting at home on the couch by myself. I need that place and those people on the other end of my car ride in order to live; in order to be me, and carry on the life that I would want for my son.