My daughter was the first person I knew with Down syndrome. I had always heard Down syndrome was bad, but I was staring at this tiny baby, and she was perfect. She was cute and smart. We were instantly in love with her. How could Down syndrome be bad if someone so perfect has it? As I battled my preconceptions about her diagnosis, I also had to set the tone for my family. The day she was born, we all cried. The following day, some friends came to visit and really helped shift the narrative. They didn’t need to see Scarlett’s features that indicated Down syndrome. They just wanted to hold her and celebrate her. I realized Scarlett deserved more and deserved to be celebrated like her siblings. I decided there were no more tears allowed.
After spending some time with Scarlett, she did not seem like she had Down syndrome. When we went to her first doctor’s appointment, I asked the doctor to point out Scarlett’s characteristics that indicated Down syndrome. I secretly hoped she would not see any, but she did. She pointed to Scarlett’s flat bridge nose and little pinky fingers with such grace. To her, these features were just facts. They did not make Scarlett any more or less valuable. That is when I realized the idea of Down syndrome that existed in my mind was wrong.
Down syndrome is not bad, it is just different. People who have a loved one with Down syndrome all know that it is not bad. I think it seemed ‘bad’ to me because it was unknown and the unknown is scary. My daughter, Scarlett, is not bad or scary. Yes, her body was made differently, but she is one of the most amazing humans I have ever met.
Most of my initial fears associated with Scarlett’s diagnosis were out of ignorance. I feared it because I had not experienced a personal relationship with an individual with Down syndrome. Her diagnosis gives me more information about how I can help her reach her full potential. Her diagnosis does not change the value of her as a human. Scarlett has to work harder and longer to accomplish some of her goals because of how her body is made. However, she is not afraid to work hard.
Scarlett has had physical therapy, occupational therapy, and speech therapy since she was six weeks old. Although it was at times exhausting making time for therapy, these early intervention services taught us so much about how Scarlett’s body worked best and how to help her reach her goals. We have been in contact with our local Down syndrome association since Scarlett’s birth. This association has not only helped us build friendships but also taught us how to advocate for Scarlett. Scarlett is followed by three specialists, along with her pediatrician. Yes, scheduling and keeping up with all of these appointments is difficult. Many things in life are difficult, and difficult does not equal bad. If we avoid everything in life that has the potential to be difficult, we would lead very dull lives.
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