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Life Goes On

Frank Burke
Uncommon Fathers: Reflections on Raising a Child with a Disability
Bethesda, MD: Woodbine House. 1 (800) 843-7323. E-Mail: info@woodbinehouse.com
Chapter 19, p. 199-206.
  Reprinted with the permission of the editor, Donald J. Meyer
Copyright © 1995 Donald J. Meyer

     Sometimes when I see the people who run to my son, Christopher, seeking his autograph, I can't help but remember that there were actually a few times when people ran away from him. Life has taken an ironic turn for us, and the changes become more and more unbelievable.
     The day Christopher was born, 28 years ago, started out wonderfully. But within hours, my wife, Marian, and I became devastated and confused. Marian called me from the hospital and, between sobs, said, "Frank, the pediatrician told me we have a 'mongoloid' and nothing can be done about it." I rushed back to the hospital and tearfully listened to her relate how the doctor bluntly recommended that we seriously consider putting Christopher in an institution. He said that handling him would put a strain on the whole family. Our decision was easy to make: he was our baby, and he was coming home with us.
     A few days later, we left the hospital without our beautiful blond-haired baby; Christopher stayed behind for more genetic testing. Resentfully, Marian signed a statement saying she would return to claim her child. On our weary trip home, two thoughts raced through our minds: what was "mongolism," and why us?
     Our faith in God got us through the first six months: it was then that we told our three other children. Ellen, 16, said, "So what?" Anne, 14, and J.R., 11, chimed in, "He's no different from other babies we've seen." In due time, we discussed Christopher's condition with our relatives and they accepted him with open arms. He was invited to all family celebrations, and this support made our life much easier.
     Christopher loved his first school. The Kennedy Child Study Center in New York City. The next school he attended was Cardinal Gushing School and Training Center in Hanover, Massachusetts. I'll never forget when we took him for a trial visit—he unknowingly destroyed me.
     We had been reluctant to leave him at the school, but two of the nuns assured us that Christopher would be fine. Marian bugged and kissed him good-bye. Then it was my turn: I bent down to put my arms around him, but he stood ram-rod straight and, with the wisdom of an eight-year-old, said, "Dad, big boys don't hug and kiss. They just shake hands." When I got to our car I broke down and cried. I wondered, were we doing the right thing? But Christopher loved Cardinal Gushing, and he made good educational strides. He spent five years there, coming home for long weekends and summers.
     For seven years after that, he went to Don Guanella School in Springfield, Pennsylvania, where he was close to J.R.'s home and family, Not having him such a distance from family made it easier on everyone.
     Over the years, Christopher flew home from Boston and took the train back from Pennsylvania. This constant traveling added to Christopher's self-reliance, but it often made me a wreck. When he flew, I was concerned about bad weather and when he rode the train, I envisioned him getting off at the wrong stop or getting lost at the station. But he never had any problems. In fact, he turned his arrivals into a game by somehow missing us at the agreed-upon meeting place—and then having us paged. I never knew his secret, but he managed to pull it off almost every time. He became a skilled traveler, and I became a skilled worrier.
     That was just one change Christopher brought out in me. His entrance into my life also made me a more tolerant person. My military service, followed by a career in the New York City Police Department, made me accustomed to regulations and procedures. I subscribed to the belief that "black is black, white is white." But when Christopher came along, he taught me that there are gray areas. I now believe that people aren't "abled" or "disabled"—they only have different measures of ability.
     When Hollywood beckoned, Christopher and I headed west. We could not predict how successful Corky Thacher and "Life Goes On" would be, so Marian stayed in New York. She had a wonderfully interesting job as the manager of the National Stationery Show. Meanwhile, Christopher and I became the Odd Couple in our two-bedroom apartment in Burbank, near the Warner Brothers' Studios. I was the cook, the maid, the chauffeur, and the valet, but most of all, Christopher's pal in his new career.
     During filming in the first season, I had no idea how personally I was involving myself in Christopher's character. When Corky had to be sad, happy, or confused— unbeknownst to me—I was mimicking his every emotion off-camera. When I realized what I was doing, I retreated to his trailer and worked on his fan mail and telephone messages. (This, by the way, is a task that never ends. Numerous organizations want Christopher's help to make personal appearances, place phone calls, write letters, or send a photo. It's primarily up to Marian and myself to handle these constant requests.)
     It was during the first season of "Life Goes On" that I became aware of Chris's determination to succeed. J.R. had given him a framed motto, which hung on his wall at home and in his room on the "Life Goes On" set. It read, "Obstacles are what you see when you take your eyes off the goal." Christopher had made that his personal motto, and I couldn't have been prouder of him. Twelve- and fourteen-hour days are the norm in filming a one-hour television drama, but he never complained and no filming time was lost because of him. Christopher told me about Spencer Tracy's credo: "Dad, Tracy said, 'A good actor knows his lines, gets to the set on time and hits his mark.' That's what I will do." And that is exactly what he strove to do.
     We would take turns picking the restaurants and movies, but our interests were almost never the same. I remember reluctantly going to see "La Bamba" and "The Buddy Holly Story." I had made up my mind before we got to the theater: "I'll go but I won't like it." Lo and behold, I often thoroughly enjoyed his choices. Yes, Christopher was teaching me, in his subtle way.
     We did, however, have our battles. I would get after him about the neatness of his room, his penchant for collecting magazines and music and video tapes, his ability to watch the same movies over and over again and for losing track of time. And I was still advising him about what clothes to wear and how to spend his money. Finally, I realized my structured background made me rigid. I knew I had to relax and let go of the reins I held on Chris, and I feel I have succeeded, although I'm told I occasionally slip back to my old habits.
     "Life Goes On" lasted for four years and we are now back living in New York. Christopher has had no problem in adjusting. He works three days a week for the National Down Syndrome Society. He often visits P.S. 138, a city-wide school for children with multiple disabilities. He proudly recalls that he got his first job there as an elevator operator before becoming an actor. Since "Life Goes On," he has appeared in an episode of "The Commish" and in the six-hour miniseries, "Heaven and Hell."
     As for me, I've been retired since March, 1987 and I have never been busier. My day starts early, negotiating details (along with Marian) regarding the many requests for Christopher's time. As Christopher's manager, I accompany him to every function he attends. Marian, Christopher, and I have been to Spain, Germany, Malta, and Canada, and have criss-crossed the U.S. countless times. Christopher is a spokesperson for both The National Down Syndrome Society and The National Down Syndrome Congress. In addition to their functions, we make a point to go to the events put on by the three special schools he attended. With all his fame, Christopher has not changed; he has not "gone Hollywood" on us. He never fails to glowingly acknowledge us and the rest of his family when he appears at these events.
     I don't want to give the idea that everything was perfect for Chris growing up. He got roughed up and suffered at the hands of unthinking individuals. He had a serious lung operation as the result of a schoolmate pushing a pine branch into his mouth. He was struck by a hit-and-run cab driver. And there were times when people chose to stay away from him.
     When he was about five, I came home from work one evening to find Marian in tears. She told me, "Chris was in the playground and ran over to a group of young children and their mothers. He joined right in. I was watching from the window. The mothers snatched their children up and went to another area of the playground. Chris was left by himself. I had to go down and take him home. Frank, how could they be so mean? He doesn't have a contagious disease." Throughout the years, we have tried to do the best we can with the cards that life has dealt us. Our faith and our family have been our strength.
     In the 28 years since we were first faced with the situation, much progress has been made in welcoming babies with challenges. If I had to give advice, I'd strongly recommend that fathers utilize their families for support and join a group in their area. Early intervention programs are prevalent—seek the assistance they offer. Don't hesitate to bring your children with you whenever it is possible.
     But I'm not speaking as an expert; I can only say what worked for our family. In our situation, there was no structured participation on my part. When I could I attended functions, and at other times I did the household chores, freeing my wife to guide Christopher. I must state that the planning for Christopher's education was accomplished by Marian, because I was busy with my career as a New York City police officer. I was also trying to obtain my college degree in criminal justice. (I wanted to graduate before my oldest child, Ellen.)
     I knew Marian was far more capable in obtaining the best possible education for our son. She has always had a caring and understanding way about her. She sees the good in people and recognizes that people with challenges have to overcome conditions they were born with. She envisions them living in two worlds: the world of other people who also face challenges and the cruel, unyielding, "normal" world.
     Fathers have a responsibility to prepare their children for that demanding world. I made it a family project to teach Christopher good table manners and to be courteous and polite. He made sure he was always neatly dressed, and we trained him to have good personal habits. Don't we do this for our other children? It is so important to do it for children with special needs. Yes, correcting Christopher was painful, but we knew it was necessary if he was to be socially accepted.
     I now look back and see that what was sadness when Christopher was born has been, in reality, a blessing. Hard work and family unity resulted in a wonderful son who is a role model not only for people who have challenges, but for others as well. Nothing could make me prouder.

Francis D. Burke was born in New York City. As a gunner on a Flying Fortress during World War II, Frank was shot down, wounded, and became a prisoner of war in Stalag 17. He has been married for 46 years, has four children and ten grandchildren. He retired from the New York City Police Department as an Inspector after 30 years of service. Christopher keeps him busy, traveling with him all over the world on his speaking engagements and his continuing television career. The Burkes have a New York City apartment as well as a home on the south shore of Long Island.

Revised: December 13, 2000.