“I haven’t lived a normal life in two years Mom.”

Ben says this somewhat laughingly as I give the boys their lunches.  School days are homeschool days and making lunch is a blessing. Raising four of my six children throughout the full day has been a lovely, messy dream come true. I do wish I could have done the same for all six. The words Ben spoke are very difficult to hear – particularly from my 14-year-old son with lupus nephritis. I respond with a comment along the lines of, “Nobody has a so-called normal life.”   ”Normal is different for each of us.”  He has experienced so much pain, and shown very little fear throughout the course of the disease and its treatment, and his eyes still dance; they shine with the exhilaration of living.  He has lived life without knowledge of the cliche. He lives life in the moment.

He loves Jim Carrey, possibly due to the fact that he has a very animated attitude and voice.  Ben and Jim.  My son has a very expressive face, the eyes in particular.  His eyebrows and mouth combinations can have us laughing in seconds.  Throw in some fun dance moves and we are gone.  (Swear he should be on stage.)  He feels and takes so much from every event; laughs and feels it fully.  He has a ferocious appetite for life when given the opportunity to explore.  Without the intent or thought of doing so, this is very visible and contagious.

A parent’s greatest fear, for many is a reality.  Death of a child. I still have my Ben, and for that I am more than grateful to God, to all Gods of all religions, to luck, to modern medicine, his doctors and my husband.  Losing him, losing his physical presence in our lives here, was a real thought that we had to seriously contemplate on three occasions, each in sincere shock.

Strange to find oneself in that position.  Very surreal.  The rest of life, that outside our circle of loved ones, finds its appropriate place behind family.  The rest of life reveals its true value by settling on a lower rung of the ladder.

As well, life becomes something that lives in a different realm.  Touch.  Speak.  Smell.  See.  Hear.  One becomes aware of another sense of our being, a connection on a different level.  Love moves to someplace inexplicable.  Perhaps this has always been available to us; though we do not see it unless forced to do so.  Could it be that the now conscious, mental, emotional connection is primary and perchance allows separation from the physical senses, the physical being?

I suppose that prospect should be reassuring.  It is I suppose. I hold close that connection.  Yet at the same moment I do not ever want to understand, or even begin to understand again, the raw, profound emotions, and connection that surrounded those days.

I want his eyes to forever dance.

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