EVERYDAY IS A DAY OFF

In response to The Daily Post’s writing prompt: “Sparkling or Still.”

My days of retirement began the day after my husband was killed in a horrifying train accident almost ten years ago. I didn’t know then that it was just that, retirement. But, in my mind, before receiving the news for sure that he was gone, I had sworn never to return to a hospital job again. Life did not stop there. Soon my son, Alex would become more debilitated each day. Days were consumed with more than the usual hospital and doctor visits. After his wife gave up on him, he came to live with me. I watched as my beautiful boy deteriorated before my eyes until three years later I walked in his room and found him with his eyes fixed on the ceiling, his lips a shade of bluish-purple, and his skin cold to the touch. He was free from all of the misery and pain that was his here on earth.

For his entire life I made the lists, kept the medications at the ready, drove back and forth from the hospitals, stayed up nights listening for his breathing and always there for any emergency. My days were still, dark and meaningless. Everyday was a day off that would slip into the next day off. It seemed endless. I struggled to figure out what my purpose here on earth was. But, I thought of all the different things that I would dream of doing if I was not driven by my grandparents to become a nurse: An artist, a writer, a counselor. My concentration was lacking, interaction with the world was null, and nothing could keep my interest.

A magical day came not so long ago when I awoke thinking that what the world needed was a book about how a child with chronic illnesses lives, is misunderstood, experimented on, hurts emotionally and physically and then dies. Not only that. The parents of these precious people deserve to have an understanding of what is happening to their children, whether it is right or wrong, and how to be their advocate at every turn. My fingers began pecking away on the computer. The feel was slowly becoming familiar again. As the words began to fly across the page telling his story and mine, the memories were no longer heart-wrenching but warm and sweet. Now I knew why I was here. My mornings were no longer the prelude to the pain and drudgery of another day. Now When my eyes meet the sun through my bedroom window, I begin anticipating what my mind will think to write about this day. So, to answer the question, on my present days off, my preference is to sit at my computer to write, make my calls to organizations that are working to change things for our children, and go to speak at different meetings with parents confused and bewildered by their circumstances.

There is a quote that I came across some time ago that says, “Pay attention to what you are doing when you realize you have been distracted from your pain. It is your CALLING!” Anonymous.

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