Next-of-Kin

I’m usually one of those obnoxious Pollyanna people who drive other people crazy. But lately I find myself crying at the oddest moments in places like IHOP, Circle-K and the mall. The reason is I’ve been thinking a lot about Terri Schindler-Schiavo, my daughter Karyn, and June 11, 1996 - the day my vocabulary grew to include the terms brain injury, coma, and persistent vegetative state. Karyn, our first child, beautiful, brilliant, and opinionated, was 25.

I remember the screaming agony as we waited outside Emergency at Georgia Baptist Hospital for word, realizing as the hours crawled past that our baby must be seriously, desperately hurt. My body yearned, my loins ached to see her and touch her – to let her know I was there. And I still feel that frozen moment when the door finally swung open and a young doctor came out asking for our daughter’s next-of-kin, and it wasn’t me or her father, but a young man we barely knew – her husband.

He asked her husband if it was ok for him to speak freely in front of us before giving his report: I’m sorry. Karyn is dying. She has a traumatic brain injury with diffuse swelling throughout her brain. Her pupils are fixed and dilated. We will soon let you in to say goodbye to her – next-of-kin first.

As it turned out, the doctor was wrong. The doctor who later said that her next-of-kin should put Karyn in a nursing home and forget her was also wrong. The doctor who said Karyn would never wake from her coma was wrong. The one who said she might wake up, but be unable to see, hear, speak, or move was wrong. The one who said she would never learn anything new was wrong.

Thank God, Karyn’s next-of-kin didn’t listen to any of them. He prayed and worked selflessly, tirelessly, to bring his wife back and he allowed us to help him. And Karyn surprised her doctors by coming off the respirator, waking up, and relearning a lot, but not all, of the things the brain injury had taken from her. I never look at Karyn without wondering what would have happened if she had gone into that nursing home instead of the aggressive coma-stimulation and range-of-motion therapy her husband insisted upon.

One thing doctors told us, though, turned out to be correct. They all agreed that most marriages where one partner is brain-injured end in divorce; the numbers are even higher when the injured spouse is the wife. Five years after her accident, Karyn came home to us and we were, once again, her next-of-kin. None of us have the life we planned, but we have a lot of joy. Karyn is happy and so are we. We know we are blessed.

I don’t pretend to know what Terri would have wanted. But when I see her smiling face and twisted hands on television, I see our Karyn strapped upright in a wheelchair, and me - not her next-of-kin, but just her mother - dancing, singing, clapping, crying, praying – anything for one tiny smile or flash of recognition from my baby. I feel again the inexpressible joy when it finally came. I feel the grief and frustration of Terri’s mother and the desperation and impotence of her father.

I feel the death of their hope.