Here Right Now
In our boredom Friday evening my husband and I randomly picked a movie to watch after our son went to bed. I did not want something stressful to watch and the preview seemed pleasant enough. What the preview unfortunately, didn't show was that the main character, a young mother, was sick and dying leaving behind an eight year old son. By the end I was a heap of tears.
Neither of us could have predicted this particular story line. Normally I would turn it off, I know better than to watch this but for some reason I did not. I realize it is very normal for every mother to worry about dying and leaving behind young children. Though I would argue that mother's that have rare diseases worry about it in a more concrete way given our diseases.
I already witnessed the worst case scenario when my Mom died from complications from the same diseases I live with. To no surprise the early months after her passing I struggled with my own ptsd that I could follow the same trajectory. It was that much more amplified though as a mother with a 2.5 year old son also with rare diseases. I would sob at night to my husband- knowing that I had to be here for him and that he could not live his entire life with such a tremendous loss. Who else could advocate for him like me, or cook all of the foods I dream up, or most of all love him the way I would and do.
Fittingly for my birthday that year my husband got me a recipe box so I could write down my recipes for him in case I did die trying to relieve one of my worries. As odd as it may seem, it was a relief to do this. As I grieved and continued to work through my fears and the trauma of my Mom's death my more rational side took over and I thankfully do not daily live in fear of dying. But in truth, that fear never fully leaves me and the movie certainly made all of those strong emotions coming rushing back.
Since getting sick I truly have come to understand that I can never predict what tomorrow will bring. A lesson I think the pandemic is now teaching the world. It is for this reason I try so hard to be present and grateful for each day and especially for the time I have with my family and friends. Except I realize recently I am struggling with this.
I anticipated winter would be hard but it has felt more challenging than I imagined and I am finding myself wishing days away. My patience is thin, after a year of pandemic living and all the stress that comes with it. Our current tactic for surviving winter is actively counting down days to Spring when we hope life will be easier. But Friday night gave me the needed perspective to stop wishing time away, to look beyond the chaos of the day and to focus more on what is in front of me. I fight daily to better my health to ensure I can be here, alive and present for my son and my family. In the stress of each day it is easy to lose sight of how precious our days are and to remember that tomorrow is never a guarantee. So no matter how long or challenging each day may feel, I remind myself that there is no greater gift. I am here right now and for that I am truly grateful.
