Preparing for a Good Death
(originally written summer of 2022)
*Trigger warning - this piece talks about death,anticipating death of a child, the death process and anticipatory grief*
How often do you think of dying? How about your child dying? Morbid sounding? Perhaps it is. But this is my normal and my reality as much as I work for it not to be. There are seasons where these thoughts ebb and flow, now is a flow season. I made my final (post death) arrangements and have started paying on those. I wish I could say the impetus to do so was because I wanted to be proactive and spare my family the hassle, heartache and agony from doing so and there is truth to that. The true reason was so I could prepare for my son’s death. The likelihood of him outliving me is slim. Based on his medical complexities and inconsistent fragility makes it an awful waiting game.
I’m repeatedly asked about using monitors whether oxygen level monitors or even a baby monitor. The answer is No, and I don’t plan on getting or using either. We had both, years ago, and I won’t use them again. Monitors at home creates unneccesary suffering for myself. When approached and asked monitor questions from medical personnel here is my response. "Let me tell you how we do things in our house. We don’t sleep in the same bed. We don’t sleep in the same room. I don’t use baby monitors. What is, is and what happens, happens. We say our prayers before going to sleep and the rest is up to him and God. I know he stops breathing at night. I hear that and intervene when needed. We’ve done all the trials of interventions which he just won’t tolerate or have any part in. He is in control. He’s learned how to compensate and make life work for him and I respect that. If I have a monitor, I will get NO sleep. How well do people function with sleep deprivation? It is safer for us both for us to continue with what we’re doing and what works for us than to bring more equipment into the house that tells me what I already know."
So you see, I often go to bed at night wondering if that will be the last time I see, hear, feel, smell my kid alive. Morbid? Perhaps. Reality, absolutely. That’s an unnerving space to be for a day or week, but indefinitely in a state of libo is exhausting. These aren’t thoughts or feelings that you, correction I can share with anybody. When I’m overwhelmed there a select few that I trust enough to say where I am and how I am. I hear Les Brown echoing in my ear “80% of people don’t care and the other 20% are glad it’s you and not them.” The suffering in silence is real. Who can handle this conversation? Who can hold me and let me process what this means. I found that it’s another parent, in a very similar situation.
I’ve learned to make every day count. I’m learning to shake the depression and even if I can’t shake it to move through it. Feel it and bring it along if I must, but to not allow it to steal the time that I do have. To create joy and memories even in the hardest and darkest moments.
There are days and many times I wish that I didn’t know as much as I do. There are days I wish I could just live in oblivion, but I can’t. I try, but that doesn’t work well. A few years ago I started speaking to all his specialists to identify what death signs were based on the body part they treated. They looked at me as if I were crazy. Perhaps I was and perhaps I am, I don’t know. I feel I do better when I have an idea of what could happen and what to be on the lookout for. It also helps in decision making. I don’t want us to be in the middle of a crisis and I have to make life altering decisions in a highly unstable emotional state and under duress. It’s time for me to have these conversations again and be more matter of fact with questions. Part of it is not knowing the right questions to ask and the other part is them not being comfortable talking about death. That last part really boggles my mind. Dying is evitable. I want to have a good death just as much as I work to have a good life, all that is within my control that is. If I want that for myself, I definitely want that for my child. I will celebrate his life and I will honor him in death.
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