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"It is the very essence of love, of nobleness, of greatness, to be willing to suffer for the good of others."
She looks like all the rest of them on the volleyball court with her gold number “5” on the purple jersey. Tall,
blonde, with incredible blue eyes and a slim athletic build,
my fifteen-year-old daughter Amanda, the kid who gets good grades and works her tail off at everything she does,
could easily be the cover girl for any teen magazine. My wife, Jackie, and I watch in amazement as she dives for another dig on the court, slides across the floor headfirst until she reaches the ball and sends it flying back over the net as the crowd claps its approval. As the coach calls time-out and the girls hurry to the sidelines, Amanda uses her jersey to wipe her face, like any other kid, but at that moment you can see the scar that runs down the right side of her abdomen and across her belly. She is not like all the rest of them. She has my kidney inside her.
As they huddle off-court my mind drifts back to September 20, 1988, and the little girl who came into our lives. “Bubs” was her nickname, short for “Bubba Girl,” a name tagged by Jackie’s sister Kim when she first saw the ten-pound, two-ounce infant. At first everything was normal with Amanda, but a few months into her life she developed searing fevers and every visit to the doctor left us more confused. Still, Amanda’s toothless grin and shining blue eyes comforted us. Even after throwing up in the doctor’s office she would raise her head and smile as if to say, “Don’t worry, be happy!” Her joy was contagious but our fear was enormous.
Shortly after her first birthday Amanda was diagnosed with kidney reflux, a common condition that often reverses itself but without treatment can be very harmful.
Her doctors decided, with our approval, to perform a simple outpatient procedure to correct the problem. Surgery was scheduled just before Amanda’s fifth birthday. Not long before we were to go to the hospital, the phone rang.
It was Dr. Kevin Ghandi, Amanda’s nephrologist, with some shocking news. “John, X-rays show that Amanda’s right kidney is toxic and making her sick. It has to be removed.” The news literally knocked us to our knees. How could this be?
The night before surgery, with Amanda between us in bed, we explained what would happen tomorrow.
Amanda listened quietly and simply, smiled, then whispered,
“Do I get ice cream when it’s all over?” Jackie and I looked at each other, wishing it could be that simple, and held her close.
We watched Amanda ride into the operating room, sitting up, with her trusted friend Teddy at her side. The gifted hands of “Dr. Kevin” removed Amanda’s ailing organ and took care of the reimplantation of her ureter into the bladder.
Everything looked good but Amanda’s optimistic prognosis came with a warning: someday, she would need a transplant. Someday seemed very far away as Amanda held her own, leaving the doctors scratching their heads about how she was able to do so well with only 20 percent of one kidney functioning. We never told them our secret.
Each night before Amanda went to bed and every morning when she woke up, I would ask her a very important question:
“Bubs, what are we going to be today?”
She would answer, “Positive, and my kidney is getting better.” This became a ritual for us, a powerful bridge between the mind and body. Soon “better” became “perfect”
and “awesome” and “incredible.” Her strength of spirit displayed itself in her physical condition.
Eight years passed. As Amanda’s body changed, the little kidney grew tired and “someday” was fast approaching.
Factors of age and relationship made me the best organ donor candidate and the doctors ordered more tests. I held my breath and a small voice inside reminded me of my grandfather’s death from polycystic kidney disease—
the same disease that would eventually lead to my father’s death. My sister did not have it and I had never been tested. I prayed and thought of Amanda’s smiling face. Jackie and I sat with the ultrasound tech in the darkness as she slid the wand over my kidneys searching for any cysts. She said, “I’m not really supposed to tell you guys, but I see two healthy kidneys in there.”
I knew then that a perfect plan was in place and that everything would be all right. It was the closest thing to a miracle I had ever known.
“Someday” turned out to be July 18, 2002. Amanda and I were wheeled into operating rooms at Children’s Hospital at the University of Wisconsin in Madison. My healthy vital organ was removed and a world-renowned surgeon, Dr. Hans Sollinger, delicately placed it in my daughter’s body. It began making urine immediately! For the first time in her young life, Amanda had a healthy kidney!
When I awoke after surgery, the nurse placed her hand on my chest and said, “Amanda is down at the other end of the room and is doing great. Is there anything you want me to tell her?”
My throat raw from the breathing tube, I croaked two words, something she would understand, “Hubba-Bubba,” my usual corny greeting to her. With tears in her eyes the nurse delivered the unusual message and Amanda, with eyes closed, did what she has always done. She smiled.
As fathers we always hope to leave a piece of ourselves with our children. For Amanda and me the bond goes far beyond the physical into a spiritual trust, a feeling for me that some agreement from long ago has been fulfilled. It is a rare thing to give life to your child not once, but twice.
Two years have passed since the procedure, and as I watch her head back out onto the court. she glances my way and
gives me a big smile and a “thumbs-up.” I push back the tears and smile back. I am her father, but she is my hero.
- John St. Augustine