Note: This is an article I wrote for Healthy Living magazine, published by Cartera Media, Inc., Greenfield, IN.
ONE DAY AT A TIME
by Darrell Boone
My son, Peter Boone, was born on August 14th, 1975 with an exceptionally serious case of a birth defect known as “open spine,” or spina bifida. Within an hour he was rushed by ambulance from Marion to Riley Hospital.
My wife and I were told that he would probably never walk, would not have bladder or bowel control, would likely be hydrocephalic (water on the brain) and have a significant chance of mental retardation. We were also told that that there could be any number of other complications, not the least of which was “reduced life expectancy.”
Nevertheless in the days that followed, my wife and I visited Peter in the newborn intensive care unit and had opportunities to hold him. Other than scars from his first two surgeries he seemed like a fairly normal, happy baby. Peter spent the first seventeen days of his life in the newborn ICU, and in the months that followed, we began to get much better acquainted with Riley and its various clinics.
Nurse Betty Hight, a longtime clinic veteran, once told us that God often gives a child born with a serious disability a kind of a “spark” in their personality to compensate. She also suggested that we not worry too much about the future, but try to just take things one day at a time.
Fast forward to May 28, 1994. After climbing what seemed like a whole range of mountains, Peter graduated from Southwood High School in Wabash County, and received a thunderous standing ovation as he cruised down a specially-built ramp in his wheelchair. That night he also received a special award. In light of his friendly, outgoing spirit and positive attitude, he was named the first recipient of the “Peter Boone Award.” This honor was to be presented annually for the next twenty five years to the graduating senior who had overcome the greatest obstacles on their path to graduation.
And this was not all. Along the way, Peter had become an extremely avid sports fan, especially Southwood and Purdue. During junior and senior high school he had not let his inability to compete physically dampen his passion for sports. He served as his team’s statistician in football and basketball for several years each, and in years where lengthy hospitalizations prevented regular participation, he became the most enthusiastic and loyal fan around. Twice, during his freshman and senior years, he was selected as “Most Valuable Person,” for his participation with the basketball team, and was named Fellowship of Christian Athletes Member of the Year his senior year.
Following high school, Peter persevered until he received his Associate’s Degree in business administration from Ivy Tech, with a minor in computer information systems. For the last five years, “Mr. Boone” has worked at Southwood High School as the school’s ISTEP Remediation aide, assisting students who are having difficulties with the state’s graduation exam.
Along the way, however, between the mountain tops there have been substantial valleys. While Peter did not experience all the complications we were warned about early in his life, he did experience most of them, retardation and reduced life expectancy—at least so far--being notable exceptions. On the other hand, he experienced about a half a medical dictionary of complications that even his doctors could have never anticipated. We’ve lost track of exactly how many surgeries he has experienced, but the total is somewhere in the 80’s. And a good portion of them were big league surgeries. Things like a spinal fusion for scoliosis and kyphoisis; having a large section of his colon removed because of gangrene, and a colostomy installed; having a J-tube (feeding tube) installed into his small intestine; having his shunt (to prevent the buildup of cerebral spinal fluid on his brain) replaced; having a cyst on his brain stem shunted multiple times to relieve pressure on his brain stem; having a spinal decompression (removing a bony portion of the upper spine to relieve pressure on the brain stem); and having multiple plastic surgeries, major skin flaps and grafts, to deal with serious and eventually life-threatening problems caused by tremendous pressure ulcers on his back.
In addition to these surgeries, Peter also experienced other complications, like meningitis, “ICU psychosis,” blood infections, and profuse bleeding. In 1987, due to trauma to his brain stem, he lost his ability to swallow and digest, had to have a tracheostomy, and had to go on oxygen full time and a ventilator at night, due to breathing problems. He also lost his ability to talk for 8 years, from age 12 to 20. In 1995, he did regain his ability to talk, through a series of surgeries in Cincinnati, and has been making up for lost time ever since.
Today, at age 29, Peter still lives with his mother and I. His room is essentially a small ICU, complete with hospital bed. He requires a good amount of help from us getting into and out of bed, but otherwise is reasonably independent, including taking major responsibility for managing his health care and personal life. He has his own accessible van, which he uses for local travel.
Peter is quick to say he has had a good life. He is a sensitive, thoughtful young man who always has a smile, laughs a lot, and enjoys life about as much as anyone you’d ever hope to meet. He doesn’t fret about things he can’t do, mostly because he’s busy too busy enjoying the things he can do, many of which involve sports. He attends all Purdue home football games, and an occasional basketball game. And he’s a fixture at Southwood athletic events, often taking tickets to help support the athletic program.
One of the highlights of his life occurred in ’94 during an extensive stay in Riley Hospital when sportscaster Dick Vitale wished him well during the ESPN national broadcast of an IU-Purdue basketball game. Following that, Peter was mentioned in an article written by Rick Reilly about Vitale in Sports Illustrated. In addition to sports, Peter also enjoys hanging out with family and friends, going to concerts (Michael W. Smith is his favorite), movies, and playing video games.
Peter is also very involved in the Wabash Friends Church, where he is an usher and involved on committees. He is quick to acknowledge the role of many people’s prayers in his life, and firmly believes that God has a purpose for him. His favorite Bible verse is Phillipians 4:13, “I can do all things through Christ, who strengthens me.”
None of us know what the future holds, especially Peter. But after taking things one day at a time, for about 10,585 days, Peter doesn’t think unduly about the future. He’s too busy beating the odds and enjoying the present.