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IF IT'S A BOY, what will his name be?" Some couples discuss the possibility for weeks or even months before the birth of their first child. Not so in our house. Five years before the birth of our first son in September 1988, my husband Jeff and I agreed on a boy's name: Ryan.
Our choice wasn't based on the meaning of the word--"little king"--but on the personal qualities of a "brother" of mine, Ryan Updike. I say "brother" because when Ryan was three and I was about eight, he became an unofficial part of our family; we baby-sat for him evenings when his mother was at work.
Ryan was a high-school junior when tragedy struck: Bone cancer took his left leg and, too quickly, his life. Yet all through his last painful months here on earth, Ryan's courage shone brightly. When life got tough, Ryan was brave and strong. He was at peace with his Creator. His funeral was a celebration. Visitors at the wake heard upbeat rock music in the background. Right after the funeral church service, hundreds of classmates gathered in the school yard and released colorful helium balloons as a tribute to Ryan.
When I first laid eyes on my own six-pound Ryan, I whispered a prayer of thanksgiving, followed by a request: that God would bless him with Ryan Updike-like courage and strength for as long as he lived on this earth--and "please, Lord, may that be a good, long time."
From the day we brought Ryan home from the hospital, every night Jeff and I have sung "Jesus Loves Me" as we laid him down to bed. Even now, Ryan and his younger brother Jordan will start yawning when they hear the tune. Later, I added two songs to the night repertoire: "There's Just Something about That Name" and Ryan's favorite, "Turn Your Eyes upon Jesus." He calls it "Turn over Your Eyes." The first time he asked me to sing the song by that title, I smiled. Isn't that cute? I thought. But the more I thought about it, the more clearly I saw that in misquoting the words, he had profoundly expressed their real meaning.
At age three, Ryan, always the serious sort, chose to turn over his heart to Jesus. Having heard prayers addressed to "Father, in heaven"; having heard Bible stories about Jesus, now in heaven; having heard family stories about Ryan Updike, gone to heaven; out of the clear blue Ryan asked me, "How can I go to heaven someday?"
On February 25, 1991, tow-headed Ryan and I snuggled together on our family room couch, and he asked Jesus to come into his heart. I marked the day on the calendar that hangs inside the pantry door. For two years running we've celebrated the day by inviting a few of his friends to a "spiritual birthday" party, complete with candles and a plastic Jesus figurine on Ryan's cupcake.
Ryan's first five years of life were pretty ordinary by our suburban Indianapolis standards: scrapes, bruises, occasional squabbles, sometimes tears, and plenty of laughter. With a child's not unusual awareness of death, he occasionally expressed a typical fear of that ultimate separation: "Mommy, I hope you don't go to heaven."
I'd offer typical motherly assurances: "Don't worry, Ryan."
There was even a predictable quality to his coming down with chicken pox in mid-March 1994, close on the heels of his younger brother Jordan's splotchy outbreak. But four days later, I knew something was out of the ordinary. Ryan was throwing up, his fever soaring as high as 106 degrees, and by the hour one pox behind his right ear was noticeably larger, redder, puffier. If I lightly touched it, he cried out in pain. "Ouchy! Ouchy!"
On Tuesday afternoon, March 22, Jeff carried our moaning, rigid Ryan to the car and we drove him to the doctor's. The pediatrician sent us on to an ear-nose-throat specialist. And after a quick examination, he suspected a pox infected with strep-A bacteria. He sent us to the local hospital.
Jeff and I stayed in Ryan's room all night, horrified by the sight: The pox was swelling and spreading like wildfire. Lying on his back on a cooling bag, surrounded by soft pillows, Ryan couldn't hold his head straight; his left cheek rested on his left shoulder. The deadly strep-A infection was ballooning, inching into his face and head and across his shoulders.
By Wednesday evening doctors feared the swelling would block the breathing passages. In an ambulance we were whisked across town to Riley Children's Hospital. Ryan had always thought ambulances were "cool." But now he didn't even notice the lights and sirens that ushered us through the city streets.
Up to this point, I'd been able to maintain some measure of courage, probably bolstered by my toughened professional persona. After all, I'd worked on hospital trauma teams; I currently worked with bone-marrow-transplant patients. But they were other mothers' sons and daughters. This was different. With every bump in the road, Ryan let out a scream that tore my heart. What could I do but hold his hand and pray?
Thursday morning two young doctors drew Jeff and me aside. "Do you have any pictures of Ryan? It would be helpful if we could compare the swollen areas to his normal features."
For a brief second I stared at the residents who had inadvertently broken through the last of my professional defenses. I burst into tears that would not stop. They wanted to know what my son once looked like. The terrible thing about it was, Ryan no longer looked human.
The doctors at Riley did what they could, but Ryan didn't improve. The swelling spread across his back until his head, twice its normal size, sat on his shoulders bolt upright. Highly medicated, he slept most of the time; when he did awaken, his brown eyes were tiny slits in his distorted face.
For the next several days neither Jeff nor I hardly left Ryan's isolation-ward room. Occasionally one of us dozed on a fold-out bed. Mostly I nervously watched the heart monitor, the dripping IV, the pulse oximeter that measured the oxygen in his blood, ready to reach for a buzzer should something not be right. I fretted about whether the doctors knew what they were doing. When visitors arrived or called, I tried to be brave.