THE DECISION

Although Emma was born with Down syndrome, 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 this genetic condition. They did not personally know a single family that had a child with any type of developmental disability. They were afraid they wouldn’t be able to handle the additional responsibility and risks that are inherent in raising a child with an intellectual challenge. 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 chose to continue the pregnancy. They were scared, 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 who had the child with a disability”. This limiting point of view would, unfortunately, define them as human beings to many people. Their beautiful daughter would at various times be referred to as “not normal” – “different” and “high functioning”. 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.

On the day Emma was born, all 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 choice. 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 them. 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 her birth, the Robertsons added one final addition to their family. Sara delivered a healthy baby boy named Dylan. At that 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 shared. 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 diagnosis 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. If others refused to understand and accept all of their children equally then they would not be a welcome part of the Robertson’s lives. 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 bravely faced challenges that they did not have 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.

Sara 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 classroom but before too long her true personality came out, and she gained acceptance and made friends. For Sara, 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 effect on people’s attitudes and their preconceived notions of what individuals with developmental disabilities were like, and she reduced their tendency to think of those with intellectual challenges as less than equal. 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 intellectual challenges 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 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, Emma 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 and surprised everyone with an engagement ring, Emma was ecstatic. 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 – but 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 picked out their dresses, and everyone was stunned by how beautiful Emma looked in hers. The first time her father saw her wearing it he could not fight back the tears. Her parents could hardly believe that the beautiful person they saw before them was the same fragile infant they had carefully held in their arms all those years ago when they were so scared and unsure about what the future held for her.

After what seemed like an eternity to Emma, the afternoon of the wedding finally arrived. It was a beautiful sunny day, and the church was filled with family and friends. Everyone in the sanctuary smiled and laughed as Emma happily waved to all the people she recognized. Her honest and sincere joy made everyone feel good. As Emma walked down the aisle with the bridesmaids, Sara could not help but think back to the moment when they were given the diagnosis of Down syndrome. So much had happened in their lives because of Emma that she simply couldn’t imagine life without her. Their decision at that time had now affected countless lives over the last quarter century.

Deciding to continue the pregnancy was the most difficult decision John and Sara ever made. And although it was the right one for them, they knew that not everyone agreed. They continued to feel enormous compassion for all couples who face the same difficult choice – because unless you have been in that situation yourself, you really can’t appreciate the conflicting emotions that overwhelm you as you struggle to do what you hope is best. But when Sara Robertson watched through her tears as her husband walked Isabella down the aisle she was certain they had made the right choice for their family.

But what if Emma’s parents had made a different decision back in 1990? What if they had not made the effort to learn about Down syndrome before they made up their minds? What if they had panicked and made a decision they could never undo based solely on the emotion of the moment without all of the facts?

Emma would never have been a part of their world. None of the beautiful moments in her life that resulted from her kindness and gentleness would have occurred. None of the joy she brought to others would have happened. Her beautiful personality would have been lost for all time. The hundreds of lives she had touched would be left unaffected. Heartbreakingly, Isabella and Dylan would never have known their beautiful sister – and John and Sara Robertson would never have seen their daughter’s face. They would never have enjoyed the warmth of her smile or delighted at the sound of her laughter. They would never have been hugged in the way that only Emma could hug them.

They would never have been privileged to experience the absolute unconditional love of the little girl they had given life to.

 

 

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