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.