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On a seemingly normal February day, the perfect storm arrived.The storm consisted of influenza.A, pneumonia and a wheezing episode- all merged in the lungs of our severely disabled daughter.There are no forecasting methodologies or advance warning systems for such pulmonary disasters, so paramedics broke suburbia's monotony with the lights and sirens of a Code 3 ambulance trip to our home.
She has charmed us since the day of her birth.She has been our touchstone, a check on priorities.
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Being the parent of a medically fragile child means coping with the unnatural reality that your child will likely leave this life before you do.Doctors feel compelled to discuss this defiance of chronological order. I call these Hippocratic insights "The Death Lectures."
The neurologist's death lecture in December was particularly harsh, for it featured a bell curve."Clair, he explained, "has lived years beyond her life expectancy.You can't expect to have her much longer." Ah, the stuff of dreams.In addition to the death lectures, we've long grappled with what we thought was our selfishness in wanting Claire here with us.
Her life is one filled with indignities, the pain of an uncontrollable seizure disorder, endless medications, and painful stares from outsiders.She had charmed us from the moment of her birth, and we didn't want to lose the anchor of our lives.She has been our touchstone, a check on priorities.
But, feeling that we were her will to live and that- left to her own devices- she would choose to be free from the shackles of a body that has never been whole, we signed a "No Code" order.This is a lawyerly document that forbids use of extraordinary efforts to keep Claire alive.Claire's "No Code" specified: no intubation.
Three of us now battled in that emergency room: Claire, the perfect lung storm, and I. Her heart rate was 230, her temperature hovered near 105, and her oxygen "sats," as the ER crowd says, were at 80 despite the 100% oxygen she was breathing. She was slipping away. A doctor, who seemed to be about 12, told me so.
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By Marianne M. Jennings,
LDS Living Magazine Premier Issue
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THE WORK AND THE STORY
