PARENTS

They are not saints – they are not superhuman and they are not perfect. The parents of children and adults with intellectual challenges are just ordinary people. They come from all walks of life. They can be wealthy, economically deprived or part of the middle-class. They can belong to any religious faith or have no affiliation whatsoever. Their ethnicity is meaningless. They can be liberal, conservative or moderate in their political views. They can be any nationality on earth and their age can fall anywhere over a span of 7 decades. However, they do share one special bond that other parents may not understand. They have endured difficult experiences with their loved ones that most of us have been spared, while at the same time, they have developed a deep appreciation for what is really important in life. They have been tested and they have risen to the occasion.

For some, the life they lead was a choice. They lovingly made the decision to adopt a child with special needs or they courageously decided to go ahead and give birth to their baby after a diagnosis of Down syndrome was made. But many mothers and fathers were thrust into this role with no advance warning, and they had no idea what the future held for them and their loved one. To go from the hopeful expectation of having a baby who is perfect, to the realization that your newborn will have certain challenges to deal with for its entire life is a powerful combination of disappointment, fear, anger and finally an acceptance of who their child is and who they will become. Some parents handle this torrent of emotions better than others. Some immediately welcome their child into their family without regard for the changes that will be brought into all of their lives, while other parents go into a form of denial and refuse to believe that their child cannot somehow be made “normal” with enough effort and sacrifice.

However they react, there is a full range of human emotions that any man or woman can go through when they find out that they are now the parent of a child who is developmentally disabled. It is just the first of many times in their lives when they are going to face a reality that is different from what they expected. The adjustments they are forced to make in their own lives and in the lives of other family members are just the beginning. Their future has been altered forever. There is no going back to “before”. Most of the decisions they make in the years ahead will revolve, at least in part, in how they will affect their special needs child. A day will not go by where they can completely forget about the responsibility that has now been thrust upon them. It is a pressure that never goes away because raising a child with special needs is not an easy road. There are moments of pure frustration and searing anger along the way. For some parents there are times when they just don’t understand why they have been placed in this position. They will feel like giving up. They will feel that caring for their child is a burden that is affecting the rest of their family. These are all genuine emotions that are completely valid. To have these thoughts is not wrong. To have doubts and worries is not wrong. To sometimes wish that your life was like everyone else’s is not wrong. It just means you are having human reactions to what, at times, can feel like overwhelming circumstances.

Unfortunately, one of the most serious circumstances that must be continually dealt with is the safety of their child within society itself. Parents of those with special needs rightfully feel protective of their children, but they also know that they cannot completely shield them at all times from those who will be cruel and insensitive. It is the agonizing realization of each parent that their child can be a target for verbal and even physical abuse and that they have to be constantly on guard to make sure that their child is not placed into an unsafe situation. It is a sad commentary on the world we live in, but it is a fact that there are individuals who will take advantage of a trusting child or adult if given the opportunity.

But for all the difficulties and heartaches, there are other moments that make the tears, the frustration and the sacrifices more than worthwhile. When a child begins to communicate either verbally or in some other creative way, when they become ambulatory in some fashion, when they begin the educational process and when they are older and they find employment – these are all milestones that are celebrated with intense pride and unbridled joy by the parents who played such a crucial role in making it happen. But above all else, the one single thing that makes the journey of life with a child who has special needs so rewarding is the love. There is a purity of love that an intellectually challenged individual has for a parent. There is a complete and total trust between that child and their mother and father. It is a bond that will last through all of their lives and it will provide them with the strength, the will power and the good humor to face the many obstacles that society will place in their paths. For each intellectually challenged child that you see accomplishing far more than the “experts” ever expected, there is a loving mother, father or both who have made incredible sacrifices to ensure that their child received the education and supports they were entitled to. When a developmentally disabled adult is able to lead a life that is enriching, they have, for the most part, accomplished this with significant parental help.

In the end it comes down to this; two human beings create a third. The result of that union, no matter how society at large may label them, is a beautiful baby. They are a completely equal member of the human family. They have the same rights as you and I and they deserve the same dignity and respect as anyone else. Whatever medical or psychological terms may be applied to that child as they are growing up the fact remains that they are a living breathing human being who deserves to be loved. When it comes to their worth as a person their IQ does not matter. Their motor skills are not important. Their cognitive abilities are meaningless. They are simply a person who is alive at this moment – on this earth – with everyone else. They deserve the same opportunities, as we all do, to live the best life possible and they have the right to be healthy, safe and happy. A good deal of this will be accomplished by the love and devotion of their parents.

The men and women who love and nurture their children from birth through adulthood know that it is a commitment that lasts for a lifetime. It is a commitment they will never relinquish. It is a commitment that they will never shirk. It is a commitment of pure love. The parents are the unsung heroes who often remain in the background gently guiding their children as they struggle for acceptance and success in life. Their reward is the knowledge that they have given their all to see that their child has the best life possible. Because of those efforts they deserve our admiration and respect. In most cases it was not a life they volunteered for – it was simply the life that was handed to them – and they responded with courage, patience, compassion and dedication.

We should all embrace those characteristics for they represent the very best of humanity.

 

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DOWN SYNDROME

Unfortunately, one extra chromosome is all it takes to convince some people that you do not have the right to be born – and if you are allowed to come into this world you are considered to be a lesser person by many. Having 47 chromosomes instead of 46 simply means you have Down syndrome. This is a condition that affects an individual physically as well as intellectually, however, it in no way detracts from their humanity or the fact that they are entitled to the same rights as someone who has 46 chromosomes and gives birth. Individuals with Down syndrome deserve the same respect and dignity that you are entitled to because ALL human beings are equal members of the human family no matter what their genetic makeup.

The heartbreaking reality is that at least 90% of all pregnancies in which Down syndrome is diagnosed are terminated. The baby doesn’t die from the condition – it dies from someone else’s decision not to deal with the condition. When you see a new baby girl with Down syndrome you are looking at a human being that has already defied the odds. But that is just the beginning. Throughout her life she will defy the odds at every turn. Professionals will set arbitrary limits on what they think she will achieve and she will surpass them. Some in society will shun her or pity her but she will rise above their ignorance. Some will be verbally abusive and cruel but she will return their small mindedness with the purity of love that she shares with every person she meets. She will make the people in her life feel blessed for having known her and she will make the world a far kinder and gentler place – all because she was not one of the 90%.

In the United States, there are approximately 350,000 people living with this condition. These individuals go to school, they hold down jobs, some live independently and they all have significant abilities and talents to offer society –  but we have to be willing to give them the chance. Is it too much to ask that a baby with a chromosomal disorder simply be allowed to be born so that it has the same chance at life as every other baby? Is that really expecting too much of us as human beings? The next time you meet a person with Down syndrome please realize you are interacting with one of the fortunate 10%, but also understand that you are fortunate for having the opportunity to get to know them, accept them and to establish a relationship built on mutual respect. Our days are enriched by their presence.

I have many good friends who happen to have Down syndrome, and they bring amazing joy into my life. I can’t imagine what it would be like if I did not get to spend time with them and do things with them. Their friendship is important. I look at them and I see human beings who are just like me. In fact I have gained a great deal of knowledge from them. I have learned how important it is to be accepted for who you really are. I have learned that it is perfectly all right not to be the biggest or the fastest – the bravest or the coolest. I have learned the value of being tolerant and forgiving. I have learned that words can hurt and that no one should be labeled by others. I have learned that laughter and joy belongs to all of us and not just to those who have money, prestige or power. I have learned that we are all basically the same in the important areas of life – and most of all, I have learned what it simply means to be human.

The number of chromosomes an individual has should in no way determine their opportunities in life. It cannot be allowed to limit their choices or influence their ability to dream. Each one of us deserves the right to be the person we really are. A medical classification should not detract from the fact that we are each entitled to live a full and rewarding life based on respect for our humanity. Every person on earth needs love and has love to give so who are we to say that a person is different just because of a physical aberration from what is considered “normal”? One extra chromosome – so what? An individual living with Down syndrome simply wants to be valued as a person – the same as you or I.

When I think of the countless lives represented by the 90% who are not even given a chance to survive, it makes me wonder what beautiful experiences we are all missing. How much more love and tolerance would there be in the world if those lives were here with us, adding joy and laughter to our world. Life would surely be richer and fuller if they were present and we would certainly be better people for having the privilege of being their friends and loved ones. It is humanity’s tragic loss when the innocent and defenseless are judged to be “inferior” and are not allowed to walk among us as equals. Down syndrome is a scientific fact of life. It is a condition that a person lives with just like any other medical issue, therefore, when it is discovered during pregnancy it should not become a death sentence.

 

IQ IS JUST A NUMBER

Do you know what your IQ is? Do you feel it is the most important thing about you? Would you want your entire life to be judged by that one single number? Does it accurately describe your personality or your temperament? Should your opportunities or choices be limited by your test results? Would you want others to think less of you if their IQ was higher?

These are the issues faced by a segment of the population that has been categorized as intellectually disabled. For some, their lives have been unfairly limited by this one particular measurement. The weight it has carried has, in some cases, determined the direction of their lives. Often it has been the overriding factor in decisions that may or may not have been correct or in the best interest of the individual. The power of that one number cannot be overstated when dealing with the lives of the men and women who are at the mercy of professionals who make judgments and recommendations based on the results of this data.

No one should have their life adversely affected just because of how they performed on a test. We do not all fit into neat categories. Many people do not endure the stress of the testing process that well. For some, a simple lack of focus can skew results. Others do not feel comfortable in unfamiliar surroundings creating anxiety which produces less than accurate scores. This is not an attempt to make excuses for how people do on these exams, but it is an effort to point out that the results can be affected by a variety of factors.

In the world of intellectual challenges, IQ tests play a prominent role in determining possibilities, predicting outcomes and in setting realistic goals. Of course some people place more emphasis on the number than others. State agencies often use test results as part of the criteria for deciding who is eligible for aid and services. Health providers use it as a screening tool to help them focus more clearly on the ability of an individual to function at a certain predetermined level. In both of these cases the test results are used as part of a plan to improve the lives of those who it is felt could benefit from extra levels of care and support.

However, some in the general public view a lower IQ as a basis for intolerance, prejudice and neglect. Individuals who are perceived to be below a certain level of intellectual capacity become targets for exclusion, cruelty and abuse. But what does it say about the abuser’s own intelligence if they lack the ability to feel compassion and respect for those who deserve to have the same rights and opportunities as everyone else? What good does it do to have a higher IQ if your behavior is still guided by ignorance and insensitivity?

I am constantly amazed by how some people believe you cannot interact or, more importantly, be friends with someone whose IQ is significantly different than yours. Why not? You have far more in common as human beings than any differences that might exist. Friendship is built on trust and respect. It thrives on non-judgment and acceptance. It develops through tolerance and understanding. These are qualities we should all be seeking. The world would be a much better place if we would all embrace these truths and apply them in each of our own lives.

When we examine the true significance of measurable intelligence we must consider how it relates to our humanity. Do we honestly believe that it is the most important factor in determining the value of a person? Certainly it can be an indispensable tool in delivering the appropriate supports to a particular individual, but we can never allow ourselves to lose sight of the human being represented by the test score. Each person must be viewed in total and must not be reduced to a number that cannot provide a completely accurate representation of who that man or woman is or what they can achieve.

That is why it is so critically important to remember what IQ does not measure…It does not measure how kind you are, how generous you are or how forgiving you are. It does not measure your sense of humor or the acceptance you find in friendship. It does not measure your enthusiasm or your determination. It does not measure the joy you have for life. It does not measure your ability to dream or to help others find their dreams. It does not measure your honesty, your gentleness or your courage. It does not measure the happiness you bring into this life. It does not measure your sense of wonder, your sense of adventure or your imagination. It does not measure the impact you can have on the world. It does not measure your ability to love and be loved – and most importantly – your IQ does not measure your worth as a human being.

We can never forget that each individual in our society, regardless of a test score, is a completely equal member of the human family. We all have the same rights and deserve the same respect and dignity. No one, under any circumstances, should have their life defined by a single number.

 

THE DECISION

Emma was born with Down syndrome – but in the eyes of the Robertson family she was perfect. When the diagnosis was made during the pregnancy there was an intense period of fear, misunderstanding and denial that occurred between her mother and father. They had no experience with disabled children. They did not personally know a single family that had a child with a developmental disability. They were afraid they wouldn’t be able to handle the additional responsibility and risks that are inherent in raising a special needs child. But after quickly gathering information and learning everything they could about Down syndrome – and after much soul searching and many heartfelt discussions – they decided it was a lifetime commitment they were willing to make. They decided to continue the pregnancy. They were nervous, but they were also courageous. 

They had no way of realizing that from that moment on, everything would change. For the rest of their lives they would be viewed as the couple with the “disabled child”. This limiting point of view would, unfortunately, define them as human beings. Their beautiful daughter would at various times be referred to as “not normal” – “low functioning” and “retarded”. Even those with good intentions, those who were entrusted with helping her achieve her potential, would insist on classifying Emma with a litany of academic and medical terms. John and Sara Robertson were about to enter a world of labels that too often looked past the humanity of their little girl. 

The day Emma was born, all of the fear and trepidation about their decision faded away. As they picked up their tiny daughter for the first time they knew they had made the right decision. They counted her fingers and toes, they tickled her, they made funny faces at her, they softly said her name over and over again – and they held her as tightly as they dared. She was their beautiful child and no one would ever be able to take that away from them. No matter what the future held they would face it knowing that they had given life to a precious little girl who they would love forever. They had made a life changing decision that they would never regret. 

The challenges they faced as a family were formidable. They already had a daughter, Isabella, who was two years older than Emma. They did everything they could to assure her that they loved her completely and that she was not forgotten as they devoted most of their time, out of necessity, to their newborn. From the beginning it seemed like everything was significantly more difficult for Emma than it had been for her sister. Virtually every milestone was delayed, but with patience and determination they slowly conquered each obstacle. Although each step forward was a struggle, it only made the hard won victories seem even more satisfying. Slowly they began to realize that Emma was going to be able to have a full, enriching life – no matter what others thought or said. 

Eighteen months after the birth of their second daughter, the Robertson’s added one final addition to their family. Sara delivered a healthy baby boy named Dylan. At this point the Robertsons knew their family was complete – they also knew they had their hands full! Their home often seemed to border on chaos but every necessary thing was accomplished in the nick of time. Laundry was done and meals were prepared. Baths were taken and appointments kept. The entire household operated on a comical mixture of panic and profound love. Of course there were times when the vacuum didn’t get run or someone forgot to walk the dog, but overall the five members of the Robertson family enjoyed the life they were sharing. They loved and appreciated each other, so the fact that one of their children had an extra chromosome was not something they focused on under their roof. She was just Emma – a little girl who loved the family cat and enjoyed playing dress-up. Each sunrise brought another day filled with exhausting adventure, but they couldn’t imagine their lives in any other way. 

John and Sara now understood that when they were told that their baby could have Down syndrome they had focused almost entirely on all the possible problems and the negative stereotypes that even the medical community still embraced. At the time they had not been able to look beyond the diagnoses and see the tiny person they would grow to love more than they believed was possible. They had no way of knowing how their child, in her innocence, would change them into caring, compassionate people who now saw life completely differently. The things they had once believed were so important had become meaningless. They were no longer preoccupied with status or material things. They didn’t care if others refused to understand and accept all of their children equally. They had learned not to automatically accept the opinions of “experts” regarding what their middle child could or could not accomplish. Instead they were focused on raising their family and fighting for Emma’s right to have the same opportunities in life as the brother and sister who adored her.     

Isabella and Dylan loved Emma unconditionally. As they grew older they both felt protective of her, and they faced down anyone who dared to tease her or make a cruel remark. They were proud of her, and they refused to let anyone hurt her. They doted on her and they shared the joy of her accomplishments because they knew how much effort they required. She was not only a sister they loved, she was also someone they came to admire because she was bravely facing obstacles that they did not had to endure. They were spared the physical therapy, speech therapy and seemingly endless medical procedures that were so much a part of Emma’s life. At times they felt guilty because their lives seemed so much easier than hers.  

Sarah had been nervous when Emma started her education. It was a huge step and she did not want her daughter to feel inferior or to become frustrated if she struggled. At first Emma was shy and felt out of place in the class room but before too long her true personality came out, and she gained acceptance and made friends. For Sarah it was surprising how quiet the house was with both of her daughters in school. She had extra hours in her day for the first time in years. It slowly dawned on her just how tiring it had been with three little ones underfoot, but she didn’t regret a single minute of the time she had spent with her children. They were the most important thing in her life, and she had done everything in her power to see that they were happy and healthy. 

Emma was petite, which made her appear younger than she really was, but as she grew older she became a person who, in her own way, quietly changed the world around her. She had a positive affect on people’s attitudes and their preconceived notions of what individuals with disabilities were like – and she reduced their tendency to think of those with intellectual challenges as less than equal human beings. Despite her small size, when people got to know her they fell in love with a girl whose smile and laughter was infectious. Without trying at all, Emma seemed to have a life affirming effect on everyone she met. 

During her teenage years she attempted many things – some of them she did well, others she struggled with – but she kept trying. Each endeavor she undertook gave her more confidence and new skills. One activity she particularly enjoyed was her participation in Special Olympics. She had always excelled at swimming, and over the years she had won a large number of medals, so her Dad built a beautiful display case to show them off. Emma made sure that every visitor to the Robertson’s home did not leave without being given the opportunity to admire her medals…She also loved to sing. She had grown up singing anywhere and all the time, despite the pleadings of her siblings. It seemed completely natural when she was invited to join a choir made up specifically of individuals with special needs who never performed without touching the hearts of everyone that heard them.

By the time she turned 21 Emma had accomplished far more than anyone ever expected. She had finished her education, she had a job at a local retailer and she was preparing to move into her own apartment so she could live independently. But as proud as she was of those achievements there was soon to be a day of importance that stood out above all the rest. Throughout her life she had emulated Isabella. She copied everything she did. She dressed like her sister. She fixed her hair like her sister’s. She liked the same music and TV shows as her sister and she even tried to like the same foods as her sister, although she finally drew the line at sweet potatoes. She idolized everything about her big sister – so when Isabella came home one evening with her longtime boyfriend, Brandon and surprised everyone with an engagement ring Emma could not contain her joy. It was the happiest she had ever felt in her life. She was crying for joy and she couldn’t help it. The two sisters hugged each other and danced around the room. Emma did not think she could possibly be any happier than she was at that moment – and then Isabella whispered in her ear that she wanted her to be her maid of honor. 

Emma’s feet didn’t touch the ground for a week. Her absolute joy spread to everyone she came in contact with. Her friends, her co-workers and even the customers she helped, all joined in her absolute delight to get to play such an important role in her sister’s wedding. The sight of her happiness made everyone else happy. It was impossible not to get caught up in her jubilation. As the day for the wedding grew near, the anticipation made Emma nervous, but Isabella reassured her that everything would be fine. They had had picked out their dresses, and everyone was stunned by how beautiful Emma looked in hers. The first time her parents saw her wearing it her father tried to fight back the tears but he could not. John and Sara could hardly believe that the beautiful person they saw before them was the same fragile infant they had held in their arms all those years ago when they were both so scared and unsure about what the future held for her……  

……But it must be remembered that the story you’ve just read about Emma’s life was only one of TWO possible futures – and tragically it was NOT the future that was chosen 22 years before

The day of Isabella’s wedding finally arrived, but Emma was not a part of it. She could not be the maid of honor because in 1990 – confused and distraught by the unexpected news that their baby would be born with a disability – a young couple named John and Sara Robertson actually made the decision to terminate the pregnancy. Emma was never born. She was not to be a part of their lives. They never saw her face, or held her in their arms. They never saw her smile and they never heard her laughter. None of the beautiful moments that would have resulted from Emma’s kindness and gentleness ever occurred. None of the joy she could have brought to so many was allowed to happen. Her love was lost to the world. The hundreds of lives she would have touched were left unaffected. Isabella and Dylan never knew their beautiful sister.

The decision to end a human life does not affect just one, two or three people. It changes the entire course of “what might have been” and therefore has a lasting effect on countless individuals. How many babies like Emma are never given a chance to be born simply because of a diagnoses? How can we play God by picking and choosing who lives and dies? The decision to terminate a pregnancy because of Down syndrome does not mean that you are disposing of something that has no value or doesn’t matter. It means that you are taking away the life of a human being – a person who has so much to offer and who, in their own way, can have a profound influence on the world. 

When a baby like Emma is not allowed to be born it is humanity’s loss. 

 

THE PERSON INSIDE

You are an important person – the result of a complex mixture of characteristics that combine to form your personality. You have both positive and negative qualities – strengths and weaknesses – as well as personal likes and dislikes. Most significantly, you are totally unique and different from everyone else. You belong to the human family and yet you are an individual. You defy simple descriptions and labels because you are more than just a “type of person”.  Each of us is convinced of our own worth. We each believe that the world would be changed forever if we were not present, and, to a degree, that is certainly true. We all play our respective parts in life and without us things could not possibly be the same.

An individual with a developmental disability is a person too.

They also have a role to play in life. They laugh and they cry, they feel joy and pain, and they have hopes and dreams. They are optimistic and confident as they make plans and achieve goals. They rise up to face challenges, and they are rightfully proud of their accomplishments. They long to be as independent as possible, and they want to be accepted for who they are. They want to be considered as equal human beings who deserve the same respect and dignity as anyone else – which means they want the opportunity to just be themselves. They want the chance to participate in society. They want to love and be loved. They do not want to be unfairly defined by a single label. 

When you find out that someone is intellectually challenged how does it change your perception of that person?

Do you treat them differently?

Do you feel uneasy around them?

Do you feel sympathy for them?

Do you avoid them? 

Do you feel superior to them?

Do you want to help them?

If you focus entirely on this single aspect of their humanity you are missing the complete person who has so much to offer the world. We must open our hearts and our minds to the reality of what makes us human. An IQ score is not the determining factor in our value to society. We must look past the labels that are used to unfairly limit the potential of a person. There are now 7 billion human beings on earth, and 3% are “defined” as intellectually challenged. That means that millions of people all over the world carry a descriptive stigma that haunts them for all of their lives. No one should have to carry a burden that is forced on them by others.

Just because an individual may be non-verbal doesn’t mean he doesn’t have a lot to say – we just have to find new ways of communicating. When an individual cannot count to ten, it doesn’t mean she can’t hold a job – we just need to make the necessary adjustments that allow her to work without the pressures of math. If an individual has difficulty understanding proper hygiene it is not a reason for him to be ridiculed – instead we need to work with him to improve his living skills so he can avoid unnecessary illness. Whatever particular challenge a person faces we can find workable solutions that will help them to thrive and be a part of the community. Every person deserves our best effort to include them in all areas of society.

For the world to ever be a fair and just place, all life must be equally valued. There can be no exceptions to this truth. Every human being, no matter what their physical or mental capacity may be, has the right to pursue happiness, good health and purposeful meaning in their lives. In order for this to occur we must become better people ourselves. We must grow in our acceptance of those who may, on the surface, seem different. We must learn to overcome our preconceived notions about how much a disability should be allowed to define a person, and ultimately we must have compassion for all human beings.

It is true for all of us that life can be difficult under the best of circumstances. It should not be made more demanding because of the narrow minded opinions of others. Individuals who happen to be intellectually challenged are more than just a diagnosis. They are real people living real lives. It is up to each one of us to look past the disability and accept the person inside. If we will do this, the entire world will change. Certainly those that have suffered so long from neglect, abuse and intolerance will enjoy a dramatic improvement in their lives, but it will also have a positive affect on the rest of us. Nothing but good can come from treating everyone with consideration and appreciation. All of humanity will benefit if we learn to accept every individual as the completely unique and special person they are.

 

 

TOGETHER FOREVER

Lawrence and Maggie had been married for 58 years. They first met when they worked together in a large department store. Lawrence had just gotten out of the navy where he had served on the USS Wisconsin during the Korean War. The day Lawrence saw Maggie step off the bus in front of the store it was love at first sight. For her it was not quite so fast. After working near each other for several days Lawrence was convinced she was absolutely perfect. He loved everything about her. She, on the other hand, had been hurt before, and she now found it difficult to trust men. But over the next six months they began to date, and she started to feel differently about him. She soon realized that he was a gentle and caring man, and Lawrence began to think that Maggie was the person he wanted to marry. Although it took some convincing, she finally said yes, and in June of 1953 they became Mr. and Mrs. Curtis. She was 20 and he was 22.

Everyone agreed that they were made for each other. They were considered to be the perfect couple. They would finish each other’s sentences. They liked the same food, the same movies and they both loved to dance. They started building a world together that they knew they wanted to share for the rest of their lives. They had talked often about having children, and they were happy to discover that they both wanted a big family. They decided after a year of marriage to go ahead and see if they could have a child. Within a few months they got the good news. Maggie and Lawrence could not have been happier. They decided that if it was a boy they would call him William, and if it was a girl she would be Lisa.

The pregnancy was uneventful, and in the early morning hours of March 7, 1955 Maggie went into labor. At first everything seemed fine, but as the hours dragged on the situation deteriorated. During delivery it was discovered that the umbilical cord was wrapped around William’s neck causing him to suffer from severe oxygen deprivation. It seemed to take forever for the nurse to bring their baby to them and when she finally did she told them that the doctor would be in soon to talk to them about “the problem”. Maggie and Lawrence were scared, but they couldn’t help falling in love with the precious little boy that had been handed to them. In their eyes he was beautiful. His tiny fingers and toes were perfect. He had lots of dark hair and his wrinkled face made them laugh. They had a beautiful son and now they were truly a family.

When the doctor walked in, Lawrence tried to read the expression on his face, but it was emotionless. Maggie sensed that she was about to hear something awful, and she held on tightly to William. The doctor simply said, “I am sorry to have to tell you this, but your child is going to be severely retarded”. Lawrence flinched and turned to look at Maggie. She was staring at the doctor with a cold hard stare of determination. “I don’t care what you say, our son is beautiful.” The doctor looked at the chart in his hands and began to speak in a way that made it clear that he had given this response many times before. “Yes, he looks fine, but he was without oxygen and his brain has been damaged. I think the effect will be profound. I do not anticipate him ever having anything close to a normal life. He probably won’t speak and he may never walk. He will be a burden to both of you for however long he lives.” The doctor paused and cleared his throat. “I would not try to raise him yourselves. There are institutions were he can be placed that are especially designed to help his kind. Of course the choice is up to you, but in my professional opinion you would be better off letting him live out his life among others who are retarded so that you can live your own lives.”

The rage that began to build inside of Lawrence made him tremble. In a voice he was barely able to control he said, “Get out.” The doctor shrugged, “It is your life, but don’t be guided by your emotions. Try to think logically because…” Lawrence cut him off, “I said get out!” The doctor nodded and quickly stepped out into the hallway. For a moment the room was filled with stunned silence. Maggie and Lawrence were both trying to absorb the shock of the doctor’s words. Finally Maggie firmly said, “I am not giving up our baby. Please tell me you feel the same way.” Lawrence began to sense the crushing pressure that someone experiences when their world has been torn apart. “Of course I want to keep him with us, but what if the doctor is right? What if it is more than we can handle? What if there are other medical complications?” Lawrence hesitated, “What if – I’m not a good enough father?” Tears began to stream down Maggie’s face. “Lawrence, you are the kindest, most thoughtful, most considerate man I’ve ever met. You will be an amazing father. We will handle this together, and we will take each day as it comes. As long as we love each other we will find the strength to do what is needed to give William the best life he can possibly have.” In the midst of all the confusion and disappointment he was feeling, Lawrence was suddenly overwhelmed by how fortunate he was to have found Maggie in this life.

In the 1950’s the decision to place a child who was developmentally disabled in an institution was made by many couples because they innocently thought it was actually the best choice. In those days people tended to take a doctor’s opinion as gospel. It didn’t even occur to them that they could be getting bad advice. They just assumed that the medical profession knew what they were talking about – but it didn’t work that way for Lawrence and Maggie. It was not an option they could even consider. In their minds they had created a human life, and he was their responsibility. He was not going to be passed along for someone else to raise. He was not going to be considered a lifelong burden. He was not going to be hidden away and forgotten about. Instead he was going to be loved. He was going to be their son.

In the following years Maggie tried three more times to have another baby, but each pregnancy ended in a miscarriage. William would be their only child. Over the next five decades Lawrence and Maggie experienced the highs and the lows of raising a child with a disability. But no matter what life threw at them, they had each other. They weathered every storm together. They savored the victories that occurred in William’s life and they held onto each other during the struggles. As he matured, William developed at his own pace. It took a while but he eventually became quite a talker with an opinion on everything. And he not only learned to walk he was active in Special Olympics. He eventually received an education and held various jobs; however, he always chose to live with his parents. William had no desire to live independently. At home he knew he was loved, he was cared for and he was protected. The thought of not seeming his mom and dad each day made him feel bad.

When it came to thinking about the future it always centered on William. Every so often Maggie would bring up the delicate subject of what would happen to William when they could no longer care for him – but Lawrence always hated talking about it. It was just too painful to think about. Although he knew it was part of his responsibility as a parent to provide for his son after their deaths, he always put off making a decision. In his heart Lawrence had always hoped that he would die first so that way he would never have to live without Maggie. He knew it was selfish, but he was convinced that it would be better for William to be with his mother. Lawrence knew that after he was gone Maggie would do the right thing concerning their son.

As the years went by and Lawrence and Maggie looked back on their lives, they knew they had made the right decision for them and their son. If William had been institutionalized they would have missed so much joy and so much adventure. Every day had been a challenge, but each day also had its own reward. Lawrence and Maggie shared a bond that few married couples got to experience. They had committed their lives to each other while making tremendous sacrifices so that their son could live the best life possible and have the opportunity to become the person they knew he could be. Maggie and Lawrence found strength in each other, and their love had never wavered.

They had known from the beginning that they wanted to grow old together – and so they did. In their retirement years they were able to spend even more time together. They doted on each other and generally acted like two school kids in love instead of a couple in their early 80’s. Of course time had taken its inevitable toll. They were somewhat frail and they both had their share of health scares, but overall life was good – and from time to time Lawrence still delighted Maggie by sweeping her up in his arms and slowly dancing with her.

But finally their journey together began to slowly come to an end, and one afternoon the dancing stopped forever. Lawrence had gone to pick up William at the end of his work day. Maggie had worried that her husband was getting too old to drive, but he just didn’t feel comfortable when his son rode the bus. They walked into the living room and Maggie stared at them blankly. Lawrence rushed to her asking, “Honey, what’s wrong?” but she didn’t respond. Her eyes did not focus on him – she didn’t seem to be aware of anything. Terrified, Lawrence rushed her to the emergency room. For the next five days Maggie underwent a battery of tests and finally the stage four brain tumor was discovered. 

It only took eight weeks for the cancer to claim Maggie’s life. Every effort was made to keep her as pain free as possible. During those two months she moved back and forth between being completely lucid and then having her mind enveloped by the darkness of the tumor. During the periods when she was able to recognize her loved ones she and Lawrence would reminisce, focusing on the many good times in their lives – and they finally made a decision about William. It was decided that once Lawrence could no longer care for him, their son would move in with Maggie’s youngest sister and her husband, both of whom adored William. As Maggie’s memory began to fade they both knew the end was near, and they didn’t want to waste a single precious second they had left with each other. They laughed and they cried as they revisited the moments that had defined their lives together. They each expressed their admiration for the other, and they both made sure they conveyed the depth of their love and devotion.

When Maggie’s final hour arrived Lawrence and William were at her side. As she slipped in and out of consciousness they quietly stroked her hair and held her hand. She could no longer speak, but she seemed to know they were with her. Thankfully she was not in pain. As her breathing slowed the nurse told them it wouldn’t be long. William could not hold back his tears as he said goodbye to his mother for the last time. It broke his heart to think she was actually dying, and it was difficult for him to believe that his mother was really leaving them for good. His parents had been inseparable, but now that was coming to an end. His father’s grief was painful to watch. The man who had seemed so strong all of his life now seemed broken. Thoughtfully, other family members led William out of the room so that he wouldn’t see the very end. Lawrence was left alone with Maggie. His worst nightmare had come true. She was going to leave him, and he was powerless to do anything about it. He sat and looked at her face thinking about the first time he saw her step off the bus six decades before. To him she still looked just as beautiful as she did that day. He wondered how the years had gotten away from them, but now he knew they were out of time. As he softly sobbed, Lawrence gently hugged her and leaning down to her ear he whispered “I love you, Maggie. We will be together forever.”

A few moments later it was over. For eighty-one years Maggie had led a courageous life. She had been a wonderful wife, a loving mother and a passionate advocate for her son and others with intellectual challenges. Even in death she had been brave. There are different criteria that can be used to judge a human life but perhaps the best way is to simply consider whether the world is a better place because a person lived. For Maggie Curtis the answer was an overwhelming yes. The world was a profoundly better place because she had made the relentless effort to support her son against all odds during his lifetime, and she had been the perfect partner to Lawrence, the man she adored with all her heart. Together they had spent their lives showing the world what love and commitment really meant.

 

THE R-WORD

Each morning you get dressed and head downstairs for breakfast. Unfortunately, your mother softly tells you that the shirt you have chosen is probably not appropriate for the job you’ll soon be heading to. Disappointed, but accustomed to not always being able to have your way, you head back to your bedroom and make what everyone will think is a better selection. You do not realize that your mother is simply trying to protect you from the possible remarks that you might have to endure on the city bus as you ride to your job.

But right now you’re back in the kitchen and ready for breakfast. As always, you decide on a bowl of your favorite cereal. Your mother smiles at you with a mixture of love and patience as she picks up the paper towels she will need after you struggle to pour the milk into your bowl. Your tremor has gotten somewhat worse over the years and every morning like clockwork a certain portion of the milk ends up on the cabinet, but she knows that you want to make your own breakfast and so she waits.

The inevitable happens, the spill is cleaned up and you both sit down at the table together. You talk about what your day will be like at the grocery store. You have been a bagger there for several years and you really love your job and most of the people you work with. They have accepted you even though a few accommodations had to be made so that you could understand everything that your position entailed, but your job coach was a big help and you now feel very comfortable there.

One of your favorite parts of work is meeting the customers. Many now recognize you and call you by name. You love that! For much of your life people seemed to ignore you or look the other way when you came into a room. You never understood this because you have always wanted to have friends and you enjoy helping people. It makes you feel great to think that people know who you are and that they actually want to talk with you…But in order to get to work, where life is satisfying, you have to take the bus, where life is not so good.

Your mother is getting older and since her illness she can’t drive anymore – so the bus is your only option. Some days it’s not too bad. On those occasions people just act like you are not really there. They pretend they don’t see you or they turn away as you struggle to get down the aisle with your halting gait, the result of a difficult birth 40 plus years ago. However, you dread the bad days. It is a terrible feeling when people snicker and laugh at you. They point or just stare at you like you’re not even a person. For some reason they seem to think that you don’t understand what they are saying, but there is nothing wrong with your hearing and every insensitive word hurts.

Even after all these years you can still remember the first time someone called you a RETARD. It was another child on the playground when you were very young. You had never heard the word before so you had no idea what it meant, but you were surprised by the cruel explosion of laughter it provoked. When you got home you innocently asked your mother about it. You can still recall the pain that came over her face and the tears that began to fill her eyes. As gently as she could she tried to explain why some people might wrongly think that you were different and that, although it shouldn’t, it could make them feel uncomfortable and therefore they used mean words that were thoughtless and hateful. At that age you didn’t exactly understand everything she was telling you, but you did realize that this word must be an awful thing to make your mother feel so bad.

Unfortunately, over the next few decades it was a word you heard much too often. Over time you learned to ignore it and to avoid those who made fun of you. At first you thought about calling them names in return but you didn’t want to hurt their feelings. You did not want them to feel the way you did. Occasionally someone would have the courage to speak up and tell the others to stop teasing you. That was the most wonderful feeling in the world. It made you feel like someone cared about you and that maybe you were important.

The power of that word, just 6 letters long, was heartbreaking. Even on cable TV and in the movies you would hear it. Why? Why would people use a word on purpose that they knew would hurt someone else? You can still remember the night you were watching your favorite actor being interviewed on a TV show and the overwhelming sadness and disappointment you felt when she said that a particular group of people were “just a bunch of retards”. You stopped liking her and you’ve never watched a single one of her movies since.

But you try not to worry too much about what others think of you. Each day you have hope that people will be a little nicer and more understanding about your situation in life. You truly believe that if they would only make the effort to get to know you as a person they would not focus on the tremor, the unsteadiness and the slower speech. Instead they would discover that you are a good guy. You have a lot more in common than they might think. You like the same restaurants, go to the same malls, watch the same sports and worship the same God. You love people and you want them to love you too. You are convinced that human beings are not really so different when it comes to the important things.

Over the years there have been many discussions between you and your mom about how unfair it is to have someone’s entire life defined by one cruel label. You now understand that it is the people who use hurtful words that have the problem – not you. They are the ones who don’t get it. You feel sorry for them…So you have decided it is not going to hold you back. You will live your life the best you can. You will do the things you want to do and you will make as many friends as you possibly can. You will simply enjoy being the person you are. After all, that is all anyone can do.