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 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.
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, "Please put us on your 'No call' list," and hang up. He did so five 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. I needed something to confirm: No "No Codes" on Thursdays.
Then a little tear drifted down Claire's right cheek. She hasn't shed a tear since she was eighteen 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 bellied his young years. "We’ll never know of 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 and I experience the same weak legs and heavy heart I felt then.
But the perfect storm met the perfect response. 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 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 fifteen years; their power was felt in her hospital room.
Decisions about 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 knew 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.