The mythology that is one’s life is something not to miss. I have been aware of mine since I was a very young child. I would see my life unfolding as an observer would at times. My life has its own flavor and rhythm to its events. It’s my life but it’s not me. I influence it and give it spice and specificity but it’s a fleeting thing whereas I am timeless and forever.Because this life is so fleeting being aware of it has been critical to understanding it and savoring every precious drop no matter how bitter or sweet or savory.
Now that I am a mother the myth of my life includes this beautiful fairy child. Sometimes when my body and mind are very tired part of me wonders where my healthy child went to be replaced by this beautiful changeling. But I only think that when I am near exhaustion. Other times I see her sleeping alternatively wonder how she is so beautiful and where the back of her head went. Microcephaly is like that – not much back of the head.
It is in the wee hours in the morning when she peeps for a moment and I go in and check that she is breathing, not seizing, and not choking that I am hit with these competing impressions. I am the observer watching some rare site that I have also seen a million times. The dualism of it is only hard to explain to the mind but is perfect reality.
I think I also have a hand in creating my personal mythology. Like steering a bobsled down an icy slope I can lean left or right, brake or hunker down to go faster. I can decide to daily play themes of hope or despair. This I have always known. And this ability is independent of outer circumstances – that I have just started learning since Ellie was born. It’s good to learn because there is no room for victim-hood in it. Which is quite freeing. Being totally responsible for my life and actions and thoughts and feelings is a freedom I did not understand before Ellie came along.
Descartes believed the unexamined life is not worth living. I agree, which is no surprise to you who have been following my blog for some time.
I wonder often how Ellie experiences the mythology that is her life. Is she aware that she is a princess in a small kingdom called home? Does she know that she is the ruler of many hearts? Is she aware of her own sweetness and power and intelligence? I hope to help her see herself without limits despite her many, many challenges. I hope to help her live in the dual nature of being a ghost in a machine that functions a bit differently than many of the other machines out there. I hope to show her it is of no matter. That the business of life is for the living not for the dying and that it’s an inner choice you make to be happy not an outer one. No one can make that choice or unmake it for you no matter what they do. I hope to help her preserve what all children know just by being, that our basic elemental nature is to be happy beyond the travails of the body and mind.
Happiness is an art.
I wonder if it’s arrogant to think I need to or can influence any of that at all in Ellie.
I do know that Ellie is a wonder to me and adds a richness to my personal mythology that was not there before she was in my life. She has taught me more about being happy than anyone else but Dave. Dave, my sweet husband with the gentle and positive nature, who has recently been dubbed “MacBrawny” (after he inadvertently worked his tea and cappuccino making charms on an unsuspecting medical student). But that is what it’s like living with Ellie and Dave every day. They are both bright sparkling lights that are pretty happy most of the time.
With that in mind, happy holidays everyone!
