I was diagnosed with Down syndrome at birth, though my mommy had an idea it might be a possibility. She had done a prenatal blood test, which indicated there was about an 80% chance I could have Down syndrome. Back then, prenatal blood testing wasn’t as accurate as it is today. Although the OB-GYN recommended an amniocentesis, Mommy declined. She already believed I was perfect, and to her, it didn’t matter if I had an extra chromosome or not. Why take extra risks with testing when she was ready to welcome me just as I was?
On the day of my birth, the pediatrician came into the room and looked at me. She then asked my mom, “Is the dad of Asian descent?” When Mommy said no, the pediatrician replied, “I’m sorry, I think your baby has Down syndrome.” But why couldn’t she say, “Congratulations on your beautiful baby girl”? It was a strange and sad way to hear my diagnosis, almost as if it was something to feel bad about rather than something to celebrate. Am I not worth celebrating like any other baby? Is an extra chromosome a reason for people to feel sorry that I was born?
Receiving a diagnosis of Down syndrome can be a sensitive experience, and the way healthcare professionals communicate it to families is important. My mom believes that people should focus first on the joy of a new life. Words like “congratulations” and “she’s beautiful” help parents see their baby as someone to love, not a “problem” to solve. How people respond to meeting me for the first time can make a big difference in helping me feel valued and human, just like any other baby with 46 chromosomes.
After my diagnosis, Mommy was filled with love, pride, and a little bit of uncertainty. She knew there would be unique challenges ahead, but she was committed to learning how to support me. One of the first steps in understanding Down syndrome is knowing that it's a genetic condition caused by an extra copy of chromosome 21, also known as trisomy 21. This extra chromosome can affect a person’s development, resulting in certain physical traits, like almond-shaped eyes and low muscle tone, and sometimes intellectual and developmental delays. However, every person with Down syndrome is unique, with their own strengths, talents, and personality.
Education about Down syndrome has come a long way. It’s now known that early interventions, like physical, occupational, and speech therapy, can significantly benefit children with Down syndrome, helping them reach developmental milestones and thrive. Mommy and I became very familiar with these therapies, as they helped me strengthen my muscles, learn to communicate, and explore the world at my own pace.
It's essential for society to embrace inclusive language and practices. Celebrating each child as an individual, regardless of their genetic makeup, sends a powerful message about their worth. Inclusive attitudes can shape how children with Down syndrome, like me, see themselves and how they are seen by the world. Mommy is proud of me, and while my extra chromosome might make me a little different, it doesn’t make me any less worthy of love, happiness, and celebration.
Ultimately, a diagnosis is just one part of the story. I’m a daughter, a friend, and a unique individual with my own journey. My life is full of joy and possibilities, and I’m surrounded by people who celebrate me every day—just as I am.
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