PLAYING FROM THE HEART
A Portrait in Courage

 An autobiography by Roger Crawford

Chapter One
THE IMPERFECT BABY

     Carol and Roger Crawford were a happy young couple with a future.  Carol, 23 years old, bright and attractive, had been a top student and beauty queen in their hometown of Canton, Ohio.  Roger, 24 years old and six feet tall with a chest like a whiskey barrel, had been a baseball star in high school and at Duke University, where he gained undergraduate degrees in psychology and business. 

     Carol and Roger were like two sides of the same coin.  She was gentle and nurturing, while he was decisive and ambitious.  She was quiet and shy, he was outgoing and strong-willed.  They had dated since they were 14 years old, but they held off getting married until Roger graduated from Duke.  They believed if their love was true, it would survive Roger’s college years.  Shortly after he graduated in 1958 they were married.  

     Roger played semi-professional baseball for a season in 1959, but injuries cut short his dreams of glory.  The following year he landed a job as a broker with the Associate Investment Corp. in South Bend, Indiana.  Carol went to work as a secretary.  In the evening, after work, they liked to take long leisurely walks and talk about the family they wanted. 

     In February of 1960, Carol came back from her doctor bursting with news.  She was going to have a baby!  It was due in October.  They made all the usual preparations; shopping for the crib and cradle, baby clothes and bottles, and they even bought a pair of little leather shoes for the baby. 

     Sonograms hadn’t yet been perfected, so there was no way to find out the baby’s sex, or to determine whether it was developing properly.  But there was no reason to think otherwise.  Carol’s doctor said she was perfectly healthy and the pregnancy progressed normally throughout the summer. 

     When Carol went into labor in early October, everything seemed fine, except that she had a lot of early pain.  Roger drove her to Marymount Hospital in downtown Bedford, but as was the custom in those days, he was not allowed beyond the waiting room.  The doctors told him to go home, he would be called when the baby arrived.  

     The labor progressed normally.  The doctors had given Carol a strong local anesthetic, which masked her pain.  The nurses and doctors were talking steadily throughout the labor, up to the moment the baby came into the world.  Carol was a little woozy from the anesthetic, but when the baby was born, she felt something was wrong.  All the conversation had suddenly stopped.  She knew the baby was alive because she could hear its small gurgling noises.  Then the baby was whisked away and there was only an eerie silence.  Carol didn’t even know if she had a boy or a girl. 

    “Can I hold my baby?  She managed to ask. 

     The doctor walked up and stood stiffly by her side. 

     “You baby has a number of problems.” He said in a low voice.  “There isn’t anything we can do.”  He kept talking but through her anesthetic fog, Carol couldn’t understand what he was saying.  What was wrong with her baby?  All she could make out was something about a hand – was there something wrong with the baby’s hand? 

     Finally, a nurse brought the baby to Carol and she held her son for the first time. The anesthesia was still strong and she wasn’t sure if she was hallucinating.  The baby seemed to have no hands at all, just forearms that came to a point, and his legs were shortened and his feet terribly misshapen.  Everything seemed crazy, nothing made sense.  All she wanted to do was hug her baby tight before the nurse took him away again.  Before she could form the words to ask questions about her son, a nurse took the baby and everyone left the room.  The last nurse turned from the door, leaned over the bed, and hugged Carol. 

     “You’re very brave,” the nurse said, choking back her tears. 

     For two hours Carol laid in her bed alone.  Occasionally a nurse would stop by on rounds, but none of them would tell her anything about her son, or her husband.  Lying on her back she began to cry, silently, until her ears flooded with tears and the pillow was soaked.  One of the most glorious events in one’s life, the birth of a baby, had turned into a nightmare.  Still the doctors refused to let he see her son again, or tell her what was happening.  Later, Carol found out the doctors were waiting until Roger arrived at the hospital.  But they didn’t even phone Roger until they had done a battery of tests on the baby to determine the scope of his deformities.  

     Three hours after their son was born, Roger was allowed into the nursery.  The front of the maternity ward was full of healthy, pink babies, bundled up behind an observation window.  The nurse led Roger past these babies to a dimly lit room in the back, where his son lay, swaddled in blankets.  The doctors had made sure to cover the baby’s hands and legs so the other parents wouldn’t become upset.  The nurse slowly unwrapped the baby.  The doctors had warned Roger that the baby wasn’t “normal,” but he wasn’t prepared for what he saw.  His son had a thumb-like projection extending directly out of his right forearm and a thumb and finger growing out of his left forearm.  The baby had no palms.  His arms and legs were shortened and he only had three toes on his shrunken right foot.  The baby’s withered left leg was folded beneath him. 

     Roger felt that the world had closed in on him.  Surely this couldn’t be happening – not to his baby!  He tried to listen as the doctor explained.  The baby suffered from ectrodactylism, a birth defect that affects 1 out of every 90,000 children born in the United States.  The deformity isn’t thought to be hereditary, but doctors do not know the cause.  The baby had just been caught in the warp of random chance and there wasn’t anything anybody could do about it. 

     The doctor gently told Roger that his son would never be able to walk and probably would never be able to care for himself.  Then he shook hands with Roger and wished him good luck.

      My parents had not yet picked out a name for me, but after my birth they decided to name me after my father – and so I became Roger William Crawford II.  They chose that name to show me that they were proud of me and that they wanted me very much.  When I was a child, I didn’t like the name because everybody called me “Little Rog” when I wanted to be “Big Rog.”  It wasn’t until I was older that I began to appreciate what they had done for me by giving me my father’s name. 

     One of the toughest things my parents had to do when they took me home was to repeat the story of my birth to each member of the family. 

     Mom and Dad tried to keep very busy during the months after I was born – Dad with his new job and Mom, who had quit her job as a secretary, taking care of me.  Staying active was a good tonic for both of them, but they still went through very rough times.  A high percentage of marriages break up whenever a child is born with a severe birth defect.  Dealing with normal children is difficult enough, but having a child that has special needs can create extra stress on a relationship.  However, my parents grew to love each other even more in those painful days and they extended that love to me. 

     My mom now admits that she cried almost daily, whenever she thought about how I would ever be able to hold anyone’s hand or feared that even the fingers I had wouldn’t grow properly.  My father, too, spent many sleepless nights fearing for my future.  Would I ever be able to take care of myself? ... Would I ever find a career?… A wife? 

     Through this, my parents never became bitter.  My mom insists that she never felt anger over my birth defects, or asked, “Why me?” 

     The hardest part of all, though, were other people’s reactions to me.  My parents still tell stories about the time they took me along on a vacation to Florida when I was an infant.  We went to the beach almost every day and they always dressed me in little shorts – they never attempted to hide my hands or legs.  Even after 28 years, they still remember the faces of the couples who came by and peered into my strolled, and the smiles that quickly faded when they saw my hands and legs.  One man’s beaming face suddenly turned to stone.  “Oh! Too bad,” was all he said before he walked abruptly away.

     My parents continued to explore medical options for me, and when I was two years old they were referred to a leading orthopedic surgeon in Cincinnati, Ohio.  They were optimistic that surgery could help expand my physical capabilities.  The doctor took a series of x-rays, and told my parents to prepare for bad news.  He informed them that there was no fibula in my left leg and the tibia and fibula in my right leg were partially fused at my ankle, which would cause me trouble when I walked.  He predicted that I would never lead a normal life.  My parents walked slowly to their car.  They were stunned and sat in the car for a moment.  Then Dad slammed his hand on the dashboard and said he wouldn’t accept the doctor’s prognosis.  Shortly afterwards, my parents sought advice from the doctors at the Shriners Hospital in Chicago. 

     Perhaps the most difficult psychological obstacles my parents faced were the feelings of guilt that would enter their thoughts during unguarded moments.  “Was I to blame for my son’s deformities?  Could I have prevented them, somehow?”  And worst of all, “Am I being punished for something I did?”  As rational, intelligent people, they know that my problems were the result of random chance and that they were in no way responsible.  They hadn’t taken any drugs (I wasn’t a thalidomide baby).  My mother didn’t drink or smoke.  It was just bad luck.  But the questions still lingered, especially for Mom.  It wasn’t until five years later, when my brother Brian was born with ten perfect fingers and ten perfect toes, that she got over her guilt.  The decision to have a second child was not an easy one.  My parents had seen a number of doctors and had taken a number of chromosomal tests.  Doctors at the Shriners Hospital in Chicago did a search of our family’s medical history, and after looking at all the data, determined that the chances were very good that my parents’ next baby would be perfectly normal.

     In the months prior to Brian’s birth, when I was five years old, my parents had to make yet another tough decision.  It was becoming apparent that my left leg was withering and it was getting more difficult for me to walk.  My left leg was shorter than my right and my left foot actually pointed straight toward the ground when I was standing up.  The leg slouched out to the right so I walked with a pronounced limp.  The foot was absolutely useless and I had to wear a cumbersome metal brace called a walking caliber.

 My father spent hours every day massaging my legs to help them grow straight and to strengthen them.  But I couldn’t walk without limping and I couldn’t run, so my parents were encouraged when the doctors at the Shriners Hospital told them about a new surgical procedure that might be able to help me.  The procedure was called disarticulation and it involved amputating my left foot at the ankle bone.  I would have to wear a prosthesis for the rest of my life, but the doctors said with the advancements in prosthetic devices there was a chance I could learn to walk and maybe even run in a limited way.  But my parents still agonized over the idea of amputating part of my leg.  The other two options included doing nothing, leaving me to wear a brace and a lift on my left foot for the rest of my life; or another surgery where doctors would implant a pin in my right leg to stunt its growth.  This would keep my legs approximately the same size, but would also have prevented me from growing over five feet tall.

      None of the options were easy and Mom especially had a difficult time deciding.  Dad was for the disarticulation operation because he had dreamed of watching me run like the other kids and this seemed to be my only chance.  When my parents asked me what I wanted to do, I said I wasn’t sure, until they told me one of the operations might enable me to run with the other children.  Then my eyes lit up and I told them I wanted to have it done right away.

      The operation and rehabilitation proved difficult.  Chicago is several hours away by car from Bedford, and was too far for Mom to drive, since she was in her third trimester with Brian.  Dad tried to see me whenever he could.  He drove up most weekends, which gave him no time to relax from his high-pressure job.

      Although I was excited about the prospects of being able to run, I was very lonely in the hospital.  I had been there before, a couple times a year, when my parents took me to “Clinic Day.”  I always hated Clinic Day, when hundreds of handicapped children would come to the hospital for general tests and check-ups.  It was hard for me to see all the kids missing arms or legs, or wearing braces, because I felt sad for them.  I never looked at myself as limited, but on Clinic Day the truth became unavoidable – I was there with the rest of these kids because we were all handicapped.

      The hospital was a huge, sterile place that seemed a million miles from home.  There were other children on the floor, though, and the nurses did their best to keep us busy.  I became fast friends with a boy my age named Sam, who was from Louisville, Kentucky.  Sam was born with no legs, but that didn’t stop him.  Sam was athletic – we’d play soccer in the playroom and he would raise up on his hands and “kick” the ball by swinging his torso.  We shared our dreams of becoming professional athletes – Sam wanted to be a professional football player when he grew up.  Despite his physical problems, Sam was one of the happiest kids I ever knew.  He always had a good word for everybody and he organized games for all the children to play.  When the nurses weren’t around, we could climb into the wheelchairs and race down the halls, bashing into flower pots and anything else that got in our paths.  Although Sam and I were wonderful friends during the four months we were in the hospital together, we lost touch after that.  I saw him only once again at a Clinic Day, three years later.  Sam was in a wheelchair and he was the same old Sam – doing wheelies down the corridors with the nurses in hot pursuit.  I often wonder what ever happened to him, though with his spirit, I’m sure he’s made a great success out of his life.

      In spite of friends like Sam, I got terribly lonesome at night and would cry myself to sleep.  I was mad at my parents for leaving me, and although I knew I was supposed to have an operation, I wasn’t sure exactly what that meant.  I just knew that I had been left alone in this huge hospital and I didn’t like it.

      The operation itself took several hours.  The doctors amputated my left foot and sewed some of the tougher skin from my foot around the bottom of the ankle bone.  At the same time, they took the Achilles tendon from my ankle and surgically implanted it in my left hand, between my fingers and along my wrist area.  That operation was an important one, as well, because it allowed me to pinch my fingers together.  For the first time, I could use my fingers to grasp an object. 

      I don’t remember any pain from the operation itself, but the rehabilitation process was difficult.  The doctors were concerned that the skin on the bottom of my stump wouldn’t be tough enough to endure the rigors of walking in a prosthesis, so they made me bang the bottom of my leg against a piece of leather to toughen the skin.  It hurt, but the nurses did their best to coax me to do it each day by telling me stories about how I would be able to walk and run like other children.  I always did my exercises, but I’ll never forget the pain and the dread I felt when I entered the exercise room and saw that old piece of leather waiting for me.

      One day, a nurse came in with my first artificial leg.  It was made of wood and it had a little rubber foot on the end.  (Since the early 1960’s, prosthesis technology has evolved dramatically.  Most of my artificial legs – I’ve had 15 of them so far – were made of fiberglass.  However, the newest artificial legs are made of a composite of graphite, fiberglass, and ceramics, which, ironically, are the same materials from which they make new tennis rackets.)

      My first little wooden leg was open at the top and the stump of my leg fit right in it.  I was so excited I grabbed it out of the nurse’s hand, slid in on, and ran down the hall as fast as I could.  It was the first time in my life I had ever run. The nurse scurried after me screaming, “You can’t do that, you can’t do that!”  But I could and I did.  I led her on a merry chase around the halls, hollering at the other little kids at the top of my lungs to watch me run.  By the time the nurse caught up with me, my leg was bleeding and sore, but I was laughing and shouting, I could run! 

     I couldn’t wait to show my parents.  They flew to Chicago soon after Brain was born.  When they finally came through the doorway of the lobby I yelled, “Mommy, I can run!”  and I took off as fast as I could go down the hallway.  Both of my parents had tears streaming down their faces when I reached them.  They picked me up and hugged me for what seemed like an eternity.  It had been a long and terrible four months, but now it was over.  I could go home.  And now I could run.  I could run!