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By JOY PERSHING
AuthorHouseCopyright © 2012 Joy Pershing
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Chapter OneA Life Worth Saving
"If anyone does not provide for his relatives, and especially for his immediate family, he has denied the faith and is worse than an unbeliever." —1 Timothy 5:8
Imagine waiting nine months to meet the miracle growing inside of you, only to experience the doctors and nurses immediately taking the baby into isolation and away from his mother. On May 28, 1969, this was the case for my then twenty-four-year-old mother. During the late sixties our county hospital placed multiple expectant mothers in a labor room until they were ready to deliver their babies; privacy was not regularly afforded as it is today.
While the other mothers were cooing and ahhing at their new baby bundles, my mother was panicking and praying for God to help save the tiny new life she brought into the world. Having had three children, she was well practiced on the process of babies and birthing and knew instantly that something was not right.
At her first glimpse, Mom knew that Paul looked different than her preceding newborns. His eyes were significantly almond shaped and his hands and fingers appeared unusually small. Her assumption was confirmed when the doctors told her they wanted to send Paul to Indianapolis to conduct further tests.
Paul was the first baby with Down's syndrome that my mother's doctor had ever delivered. He delivered the grim news to Dad in the isolation room. After explaining to my father that he thought Paul might have a condition called Down's syndrome, Dr. Fred Haggerty picked up Paul and showed Dad that a healthy newborn should stiffen their limbs if they were not held securely. As Dad witnessed, Paul's limbs were naturally relaxed in the doctor's open hands. It was Dr. Haggerty that suggested that Dad and Mom take Paul to a larger hospital in Indianapolis, where they would be better equipped to handle cases like this.
Mom left the hospital the same day that she delivered Paul, which was uncharacteristic in 1969, when most postpartum hospital stays were three days. However, inside she felt a new fire to save the life that God had entrusted to her and she did not want to waste one second. Paul was born with a compromised immune system and the sooner he could get access to more advanced care, the better his future outlook would be.
Mom and Dad wanted Dave, Steve, and Mark to meet their new brother, so before making the hour-long journey to Indianapolis, the three boys smiled at him through a car window, welcoming the new baby into their world. Mom remembers how Steve was instantly drawn to Paul; that bond proved to last a lifetime and beyond. Dad explained to the siblings that Paul needed to see some special doctors in Indianapolis and that he, Mom, and the baby would be back home soon.
Riley Children's Hospital confirmed Dr. Haggerty's original hypothesis that Paul was born with Down's syndrome and that he was at the "severely profound" level on the spectrum of mental retardation. The doctors at Riley carefully explained that Paul's sucking reflex was not functioning and that they were unable to get him to drink milk or medicine on his own. Dad remembers watching Paul's infant body turn tragically lethargic, and Mom remembers that with each passing hour, Paul's body became more and more lifeless. My parents were encouraged to leave him at the hospital where, if he survived, he would be placed in a special facility with other children with conditions as severe as his, and he would receive immediate and cutting-edge medical treatment. Dad remembers being advised that leaving Paul in institutional care was in the best interest of their other three children as well. The chances of long term survival for Paul at that time were slim, according to the statistics presented to them. After experiencing all the wonderful times we have had with Paul, the idea of leaving him with an institution seems appalling, however, our family has always credited Riley Children's Hospital for being open and honest with their advice. Furthermore, their comprehensive and aggressive care has saved Paul's life many times.
My parents never take the easy way out. They are strong, conservative Christians, and their faith and trust in God is what led them to do what others might have classified as insane. Dad checked Paul out of the hospital and brought him home, and Mom diligently worked with Paul to develop a sucking reflex so they could nourish his already-struggling body. Mom recalls that during the day Paul remained lifeless, but she continued to try to breastfeed him. She remembers the moment that his sucking reflex started working, because he did not want to stop eating once he started. As she recalls the moment, she smiles with pride that in a short time, he was sporting quite the baby belly!
Paul was doing well nursing and did not start having problems until he was almost one year old. He immediately started getting sick after he was weaned. Over the next three and a half years, Paul was in the hospital more than he was at home. His health did not improve until they met with Dr. Brown, an immune specialist, who sent Paul to Methodist Hospital in Indianapolis to begin a series of shots that would boost his immune system. Mom and Dad drove Paul to Indianapolis daily for the injections; Paul's health improved significantly with each shot. Eventually, Dr. Haggerty was able to start giving the shots to Paul in Greencastle.
Paul continues to battle pneumonia, ear infections, sinus infections, eye infections, asthma, allergies, arthritis, and dental issues forty-two years later. These illnesses are compounded by the fact that my parents have to keep a watchful eye on him at all times because of his inability to communicate exactly what is hurting him. Paul is not one to complain, and early detection through Mom and Dad's finely-honed insight, is key to his survival. However, Paul doesn't let their concern get him down or set him back. He asks for prayer and believes that God will answer him. And, God answers!
Chapter TwoGrowing Up Normal with a "Dis"ability
"I can do everything through him who gives me strength." —Philippians 4:13
Dad recalls the conversation he had with Mom when they concluded that God had an earthly purpose for Paul to fulfill, and that all attempts should be made to treat him like the rest of their children. This meant placing the least amount of restrictions on him so he could grow and learn as an individual, while still maintaining his health and safety. They had normalized him so much that it wasn't until I was five years old and Paul was ten that I learned he had been born with a disability.
One Summer'S Day
I remember most everything about the steamy summer afternoon when I found some loose change around our house and asked Mom if I could use it to buy a piece of candy at the candy store. She agreed, as long as I took one of my brothers with me. I interrupted Matt and Tim playing in the back yard to see if they would take me, and they both said no; so I asked Paul. I remember looking up at him with full faith that he would and could take me, and he obligingly agreed. He helped me into our little red wagon and he pulled me the three blocks to the corner grocery store just off of the DePauw University campus.
Once inside, Paul quickly found his favorite candy—Sixlets chocolates. As I was perusing the bounty of sweets for my final selection, Mom and some of our brothers stampeded through the grocery doors in a surprising panic. I began to cry at all of the fuss around me; I didn't understand why Mom was so distressed. I knew for sure that she agreed to let me go as long as I took one of my brothers!
It was later that day when she explained to me the hazard in taking Paul out alone, since people in the community would not likely be able to understand his speech or unique sign language like we could. She continued to clarify that if he and I were to get lost, Paul would not be able to explain who he was or where we lived. I remember curiously wondering how any cogent person would have difficulty communicating with him.
I started to understand more clearly that summer Mom's concern regarding Paul's lack of ability to communicate with others when he started to sneak away on his own. Paul became very familiar with the DePauw campus, including the various dormitories and fraternity and sorority houses. DePauw became quite comfortable with him as well. Mom did not like us to watch TV after our morning cartoons and Paul understood clearly that the fraternity and sorority houses had several television sets. It was not uncommon for a student to walk into their room and find Paul sitting on their bed watching their TV. It didn't take long until they had our phone number posted by their telephones to report that Paul had slipped away again.
Paul continued his endeavor as a runaway in other various areas of life. For instance, with seven children in the house, Mom delegated summer chores to everyone, including Paul. It was understood that while Mom cleaned or cooked for us inside the house, we were responsible for helping watch Paul. This duty fell more on the boys than me, since I rarely left Mom's side. Paul was known at the time for being an escape artist—even better than Houdini himself! Paul could back away from you right in front of your own eyes and you would never notice him running off. The police often helped us find him as we would try to recreate his invisible path. Paul learned to be so quiet that you could walk right past him without knowing it; he was as quiet as a mouse and as still as a deer.
One time my parents took us to the Indianapolis Museum of Art; Dad recalls holding Paul's hand through the museum, while showing Paul an exhibit. When he looked down at Paul, he realized he was holding another child's hand! Paul took a random child and quietly placed his hand in Dad's hand, allowing him to sneak away ... again. We also frequented the Indianapolis Children's Museum. We had to be especially cautious at this museum because Paul always wants to ride the carousel on the top floor; he made several attempts over the years to casually break away from the family and go back to the carousel.
Vanishing Food Trap
Paul was also known for another subtle move that we called the vanishing food trap. We were expected to eat everything Mom put on our plates during meal time, and we were to waste nothing. Mom's rule was that even if you don't like it, you still have to try it. As you can imagine feeding nine people at one time caused Mom to run frequently from our dining room table to the kitchen, while Dad's routine was to help Mom tidy the kitchen as we finished off the vegetables that we didn't like.
Our kitchen had a swinging door separating it from the dining room. When Mom and Dad would depart into the kitchen and the door would swing shut, the Vanishing Food Trap process would begin. Whoever didn't want to eat something unpleasant on their plate would quietly say to Paul in Step One, "Do not touch my plate, and do not eat my food." Step Two was to walk away from the table. This was followed by Step Three, where Paul would hastily rush to the plate and consume every last crumb. Step Four was to walk back in to the dining room and pretend like you were upset that he ate your food. Since the family rule was to sit at the table until you cleaned your plate, Paul made it very easy for the rest of us to get to Step Five, which was to move along with our evening. This worked flawlessly until Mom and Dad became aware of our deceptive arrangement.
The Wrestling Days
Paul became fascinated with wrestling around the age of ten, and soon Saturday mornings in the Tesmer house gave way to WWF wrestling matches with the likes of the great Hulk Hogan, the Sheik, and Paul's all-time favorite, Dick the Bruiser. As the youngest child and the only girl besides Mom in the house, I resented the power that wrestling had over Paul because he was in no way partial when it came to picking out his next wrestling opponent!
Dave, the oldest sibling, fueled Paul's passion for the sport. Dave taught Paul all of the different moves and holds before they would stage different jumps and stunts where Paul would end up flipping Dave over his back. During this phase of Paul's life, we quickly and sometimes painfully discovered that it was no longer safe to lie on the floor to watch TV, or we would risk an elbow or knee drop followed by a headlock from a very animated boy-wrestler!
Tim, the fifth youngest sibling, recalls how Paul loved to put him and Matt in a headlock. They would lean forward at the waist as Paul would hit them on the back with a synchronized foot stomp, as seen on Saturday-morning wrestling. This stomp was to make the hit on the back sound significantly harder than it really was. While the boys have a fondness with the wrestling days, I was happy when he moved on to something else! Wrestling was not my idea of fun role-playing.
Matt and Tim, brothers number five and six, remember Paul jumping off of the back of the couch onto whichever one of them was ready and awaiting a new match. Paul also cherished the role as the announcer; he would assert in an exceptionally stadium-like voice, as clearly as he possibly could, "In this corner weighing in at seventy-five pounds, from Greencastle, Indiana ... Matthew Robert." He would raise Matt's arm and move over to Tim and announce him the same way. Paul loved to watch them wrestle as much as he loved to put people in different wrestling holds. The only drawback that my brothers could recall during this time was that that he would not let them win against him or even wrestle him back. If any of the boys put him in a playful wrestling hold he would cry out, "Mommy!" or, "Daddy!"
Tim recalls how Paul used to be the first person to run out the doors of our church on Sunday evenings so he could strategically place himself to await his weekly victim, our cousin Joe, and inflict his perfected headlock on him. Joe knew this was coming every Sunday night, but always pretended to be surprised when Paul would jump out and wrangle him into a hold.
Dad became a Boy Scout leader when our oldest brother Dave was old enough to join. Dad spent many years taking his sons and their troop members to camps and pinewood derbies. As soon as they were eligible, Steve, Mark, and Paul joined the group, too. When Paul became a Boy Scout, he loved wearing his brown uniform and scarf and attending the meetings with Dad as his leader.
Paul participated in the activities alongside his scout mates and truly loved spending time outside. Paul and Dad attended a camp at Bradford Woods near Bloomington, Indiana one year, and they got turned around in the woods, which led to several miles and hours of hiking. It was dark when they finally made their way back to their cabin. Unfortunately, they forgot to bring their sleeping bags from the car. After spending the night covering up in some plastic that they found in the closet of the cabin, Paul missed the comforts of home. When the camp was finally over, so were his Boy Scout days; he told Dad he was finished.
Favorite Television Shows
As a young boy, Paul was mesmerized with the TV shows Batman, The Dukes of Hazard (Boss Hog was his favorite character), The Incredible Hulk, and The A-Team (B. A. Baracus was the man!). We were not allowed to turn the television on during the day, so in the late afternoon when we were able to watch it, Paul turned on his shows and we all watched with him. None of the other siblings thought it was unfair that he picked out the shows, we were happy enough just to watch TV.
During the fighting scenes Paul would jump up to join in the on-screen fight by air-punching the "bad guys," who were invisible to the rest of us, but very real to him. He made sounds with his mouth like "PSHHHH, PSHHH, PSHHH" with every punch as he desperately helped Batman and Robin defeat the Joker or other super-villains.
If being a normal kid means loving superheroes, watching television, loving sports, swimming, and eating, then my parents' goal of establishing normalcy in Paul's life was realized. Paul could drive up and down the road in front of our house on his big, bad, pedal-powered, three-wheeled, Green Machine faster than any kid on the block! He was able to make life-long friends that he still holds dearly and works with even today. Mom and Dad found a way of minimizing the "dis" and maximizing the "ability" in Paul's disability.
Excerpted from Being Bear by JOY PERSHING Copyright © 2012 by Joy Pershing. Excerpted by permission of AuthorHouse. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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