October marks Down Syndrome Awareness Month. You may ask, why do we need awareness for Down Syndrome? Most people know that Down Syndrome is a chromosomal abnormality affecting the 21st chromosome, and they are “aware” when they see someone with the features of Down Syndrome. Yet, many do not anywhere near understand what that means, despite the fact that it is the most common chromosomal condition in the world today.
I know, because I, too, had limited awareness on the diagnosis just four and a half years ago. March 1, 2012 at 34-years-old and 34 weeks pregnant, my husband and I were told by prenatal specialists that our son had a 90 percent chance of having Down Syndrome. That day is all pretty much a blur for me. I know I had a lot of sympathetic looks and mumbled comments of “I am so sorry.” Nobody that day or days after ever told me “It will be fine” or “Congratulations.” That day was full of despair and one of the saddest days of my life. I cried myself to sleep that night and remained in a state of denial and depression up until four weeks later when I delivered my beautiful sweet boy, Preston, who did in fact have Down Syndrome.
Looking back four years later, why was everyone so sorry? Why did they not congratulate me or my husband? We are aware of Down Syndrome, but few know what that really means. Back when I was in school, children with Down Syndrome did not attend classes alongside typical children, they were often sent away to special schools or put in special needs classrooms having limited interaction with their peers. I did not know what Down Syndrome really meant because society did not foster an environment that would allow me to know. I would imagine that is why I got so many sympathetic looks those weeks leading up to Preston’s birth. None of those people, doctors included, really knew what Down Syndrome was like.
Preston radiates happiness and joy. He completed our family in ways we never thought possible. He makes us laugh every day. People love Preston, and he loves to make new friends. Few walk by him in the store without receiving a friendly “Hi” or a high five. Just a brief interaction with Preston makes someone walk away with a smile on their face.
Preston is a good friend to his preschool classmates. He has some awesome dance moves, a great laugh and a contagious smile. He loves music and wearing sunglasses and hats. He always has a great time wherever he goes. Preston is an awesome little brother to his sister, Kierstin, 8, who absolutely adores him. He is a valued member of the Bradford community and is probably the most popular person I know. His life is not something I pity or wish would be different. Anyone who truly knows him thinks that he is pretty great just the way he is.
Yes, he has had some extra medical challenges and a number of extended hospital stays. He did not walk until he was almost 3-years-old and struggles with milestones that are easier for typical 4-year-olds. However, there is not a task that we have given him that he is not capable of working hard on and achieving. He will do great things in his own time, and I am confident that he has a bright future ahead.
In the four years Preston has been on this earth, he has taught us so much about patience, strength, and endurance. I feel that I am a better person simply because he is in my life. Not to mention, we have made so many wonderful friends along the way who happen to have Down Syndrome, too. They all mirror Preston’s joy. They work hard and are contributing members of society. They have meaningful relationships, hold down steady jobs, and go to school (some even college). These people all have so much to offer!
This makes me reflect back on that person I was on March 1, 2012 with so much regret. Why did I waste so many tears? I knew of people with Down Syndrome, but I never really knew any of them. If I had, I would have known that I had no reason to be so upset about the blessing that was coming my way. I regretfully remember thinking “Why me.” After Preston was born and I saw how wonderful he truly was, those thoughts quickly turned to thankfulness because it was me who was blessed with him.
That is why awareness is so important. I want future generations of parents to know if you receive that diagnosis for your child, it is not the end of the world. It is different, it is not what we expected, but in no way is it the dark future that gets painted for you.
My son may never be a rocket scientist or doctor, but that does not devalue his life. He will be a good person, a kind friend, and a ray of happiness and encouragement to so many who so desperately need it. Do not discount his worth. He will grow up to be a great person! Accept him for who he is and you will find that he, too, has something to add to this world!
According to the National Down Syndrome Society, there are approximately 400,000 people living with Down Syndrome in the United States today. Down Syndrome occurs in people of all races and economic levels.
