It’s not my mistakes that I regret but the things I should have done. All the “someday” moments of postponing my happiness and needs. Those last months with my mom drove that point home in a way that I was ashamed and yet equally proud of myself by the end. Thinking back on my life and hers as I sat there for so many hours. All the sacrifices she thought she had made for us in the false hope of our father changing or the good days lying ahead. The pain and suffering amounted to this. Grasping at last moments and words from her for some type of hidden meaning or absolution but that’s just for books and films. The reality is far more boring and messy. There wasn’t a poetic monologue. Every minute decision I made was with the hope that she knew how loved she was because none of the arguments mattered any longer and never really did. She desperately wanted to be right in every one of them and I just wanted to be loved by being heard. Loving someone is being on their side even in a fight and the only battle left was against the pain that was besieging her body and we were hand in hand through this.

It was in those moments that I realized how strong I was and how little anyone could help me other than being there by my side but just how impossible it was to ask that of them. I could attribute the ability to function under stress and trauma to past experience of having to do so but as to why I’m able to do so is less to do with ability and more to do with my determination. It simply needs to be done and I refuse to give up on those that I love but all too often at my own detriment. If only I fought as fiercely for myself.

My health has suffered over this past year. When I’m honest, the last ten years and not only because of caretaking my mother but my children. Sitting for so many hours in a hard chair. Driving every day for hours. The emails, the phone calls, the research, the meetings, the difficult conversations where I fought back my tears and anger. Time and aging didn’t stop and my DNA had plans of its own.

I put on thirty pounds of water weight within my lymphatic system due to my lymphedema. My heart couldn’t take the stress or the effort and now I have a thoracic aortic aneurysm (TAA). The Ehlers Danlos syndrome, the connective tissue disorder I was born with, is the unstable scaffolding of my body. The added pressure within my lymphatic system has pushed my joints and left some permanently misaligned. Most of this was possibly unavoidable due to genetics and time yet stress, insufficient or negligent medical care, and the lack of emotional support have worn away at me. The hours by her bedside gave me time to reflect on not just her life but my own.

All the while there was the hiss of her oxygen machine, the beep of her monitors, the squeak of the nurses shoes, the antiseptic smell that permeated everything and hung on me until I showered. Like so much of life, she passed quietly without the world noticing. Just outside the door I could hear the murmurs of conversations and it angered me that anyone would dare speak while she slipped away. Didn’t they know who this was? Didn’t they care?

It’s four months now and it feels like it’s been four days in my mind and more than my four decades when I look in the mirror. More than once I’ve woken in the early dawn hours from a dream thinking that my mom was calling me for help once again and have to stop myself from packing a bag to go to her. Twice I’ve sat fully dressed, crying on the edge of my bed, holding my messenger bag realizing that I had dreamt it again. Feeling guilt over being relieved that I didn’t have to go through the roller coaster ride of rushing to her side and battling for services yet again. It’s possible to mourn someone, miss them, and be relieved that they’re gone all at the same time. Her pain is over and mine has changed. No longer do I sit by her bedside hearing her moan in pain or beg for me to help her but I have the echo of those moments in my mind and sleep. I grieve the someday she longed and hoped for just as I do the someday that I hoped I would have with her. Thankful that she didn’t succumb to COVID and that she passed during a window of time that allowed us to be with her. Other families haven’t been as fortunate.

All of us are grieving at the moment. Whether it’s the loss of a job or a home, loss of intimacy with friends and family, or a loved one. We’re collectively reeling from losses and holding our breath for the measure of the sum which is yet to come to pass. The proverbial other shoe is dangling as we wait for the latest update about the pandemic, the environment, and the outcome of powers presiding over us. There is uncharted terrain ahead and we’re facing it with a cultural grief that is weighing us down as we wait for the “someday” of life returning to what we were accustomed to. For those of us grieving a loved one, that day might return but it will be missing someone we love.

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