Jewish World Review April 18, 2002/ 7 Iyar, 5762

Marianne M. Jennings

Marianne M. Jennings
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Consumer Reports

Claire's life | On a seemingly normal February day, the perfect storm arrived. The storm consisted of influenza A, pneumonia and a wheezing episode merged in the lungs of our severely disabled daughter. There are no forecasting methodologies or advance warning systems for such pulmonary disasters and so our home filled with paramedics who broke suburbia's monotony with the lights and sirens of a Code 3 ambulance trip.

Being the parent of a medically fragile child such as our Claire means coping with the unnatural reality that your child will 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. "Claire," he explained, "has lived years beyond her life expectancy. You can't expect much longer." Ah, the stuff of dreams.

In addition to the death lectures, we have long grappled with what we thought was our selfishness in wanting Claire here with us. Her life is a hard one, full of 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 the "No code," a lawyerly document that forbids use of extraordinary efforts to keep Claire alive. Claire's "No Code" specified: NO INTUBATION.

Now three of us 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 100% oxygen. She was slipping away. A doctor, who seemed to be about 12, told me so.

He gave me an ultimatum with minutes to decide whether the "No Code" held. I needed a little help with life and death and tried to reach my husband. The caller ID at home registered the ER phone as "unavailable" and my young son, enamored of telling off telemarketers, was doing what he had been taught to do: Answer, say "Please put us on your 'No Call' list," and hang up. He did so 5 times. Home communication lines were down, foiled by hawkers of time-sharing RV resorts and vegetable choppers.

Alone, I cuddled Claire, searching for an answer. Her struggle was a mother's nightmare. The only justification I could muster was that it wasn't right for her to leave us on a Thursday evening! I'm not sure what evening would be right, but Thursdays were out and I needed something to confirm: No "No codes" on Thursdays.

Then a little tear drifted down Claire's right cheek. She has not shed a tear since she was 18 months old. Fourteen tearless years through unimaginable pain. Now came a tear of sadness. I had my sign and my answer from a child who has never spoken.

I called in the 12-year-old resident and asked if Claire's perfect storm was reversible. His wisdom belied his young years, "We'll never know if we don't try."

It was not my decision to make. It was Claire's. Claire's life. Claire's choice. I gave the young doc the American thumbs up, "Let's roll." I stood to one corner and watched the intubation. Its very violence made me quiver and doubt. That thin, tiny body with porcelain skin convulsed. That moment still flashes through my mind at times and I experience the same weak legs and heavy heart I felt then.

But the perfect storm met the perfect response. Claire fought. She battled her way back from the brink. Claire, the outlier, defied the odds. Foolish doctors! She has no bell curve. Claire will live her life on her own terms. She wields power on its length.

As she fought and I sat helplessly by, eventually matching my breaths with those of her respirator, I had an epiphany. Claire's life has meaning and purpose and she knows it. She brings out the very best in every life she touches. Through her I saw the compassion and dedication of the doctors, nurses and therapists at Phoenix Children's Hospital who fought as hard as Claire did. Claire showed me the selflessness of a sister who took over my other children for that week. My daily conversations with my parents about Claire had a spirituality I shall cherish forever.

Claire allowed me to see my colleagues, who stepped up to cover for me, in a whole new light. From deans to staff, they helped and they cared. Claire showed us neighbors putting out our trash as we coped at the hospital. Claire's teachers, school nurses, school staff and bus drivers were with us. There were so many prayers for this being far too tiny for her 15 years that her hospital room felt powerful.

Decisions on life and death are not ours to make. They are made by a higher authority who works for the good of the whole and who knows the good the whole can show. Yielding to the power and wisdom of that higher source is the humbling lesson of Claire's life. And she knows it. Finally, her mother knows it too.

JWR contributor Marianne M. Jennings is a professor of legal and ethical studies at Arizona State University. Send your comments by clicking here.


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© 2002, Marianne M. Jennings