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“I haven’t lived a normal life in two years Mom.”
Ben says this somewhat laughingly as I give the boys their lunches. The words are very difficult to hear – particularly from my 14 year old son. 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 disease and its treatment, and his eyes still dance; they shine with the exhilaration of living. His life has been the epitome of the cliche, live 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 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 thought that we had to seriously contemplate on two occasions in utter 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 connection is primary and perchance allows separation from the physical senses, the physical being?
I suppose that should be reassuring. It is. 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.
This is a beautiful piece. My words would not compare.
Thank you for sharing this personal story about Ben. We experienced the horror of nearly losing Jake in 2002. We were told at one point in ICU that there wasn’t much hope that he’d survive and if he did, he’d certainly have brain damage. He made all the doctors and specialists “eat their words” when he woke up from a coma fully alert, full cognizant of who he was and where and what he was doing.
Not only that but he asked about the Ohio State Buckeyes and conversed with the young resident who stood there with his big grinning mouth slightly hanging open at this miracle. We have never experienced that same raw pain as in the hospital but for a while in 2005 we were in a state of constant fear as he experienced several uncontrolled flares. We never forget the past but are now continually grateful for the last year and half that God has allowed peace and great health. Like you I want to always see that sweet boy’s eyes shine with health and I pray that we will be allowed to have that privilege always.
Mom, I never knew that you had this website. Obviously this is where Elliot gets his great writing skills from. I am very greatful that you are my mother and Ben is my brother (and of course everyone else in the family). Its been hard as a sister to watch him go through this especially the times at MUSC but I am glad that I lived in Charleston so I could see him as much as possible, and I could never imagine how hard it has been for you. Ben has the best outlook on life though and does enjoy it to the fullest like you said, each and every moment. Love you!
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