October is a huge month for health awareness. Ribbons have adorned the corners of social media profile pictures in various colors, such as pink for breast cancer awareness.
Today, I want to talk with you about a ribbon of yellow and blue. It signifies Down Syndrome awareness and has impacted my life in an unexpected way.
Just over five years ago, I sat next to my husband on an orange vinyl couch in our daughter’s NICU room. The sweat of our hands mixed as we anxiously awaited news from the geneticist who stood talking to the nurse just outside the room. I stood as he entered the room wiping the sweat from my hands onto my pants before shaking his hand.
His eyes told me what his findings would be, what I already knew in my heart. My daughter was born with Down Syndrome.
Emotions enveloped both my husband and I. Down Syndrome was something I knew of, but not about. We had so many questions regarding how Down Syndrome would effect Audrey. How would this change the vision we had for her health, her quality of life, her future? The hospital staff was very loving with this new information. They guided us to information to help us understand what impacts Down Syndrome could have on Audrey’s already fragile life.
There were so many things I didn’t know. Questions like:
- Why was society so afraid of a person being born with Down Syndrome?
- How would my daughter function in life?
- Would she be able to do the same things as a typical child?
- Would she enjoy life?
- Would she be loved?
Let’s start with what Down Syndrome actually is. Audrey was born with one extra chromosome, the 21st one. This is the reason that her eyes had that almond shape. She had the most beautiful blue eyes that lit up when her favorite people entered the room. Those eyes searched the world with the same curiosity as a typical child. That extra chromosome also gave her that little space between her big and second toes on her sweet little feet. Those same sweet feet earned her the nickname “Cricket” when she would lift them in the air and clap them together with excitement. Usually, that happened when a tune was playing for her. She loved music, much like my other children.
That extra chromosome is the reason for her loose muscle tone. My sweet girl could touch her head with those toes! That also means that many people with Down Syndrome may struggle to form words as clearly as you or I.
So why is society so afraid of a person being born with Down Syndrome? Well, society is often afraid of things that are not considered normal. Historically, Down Syndrome is associated with medical challenges. These challenges are not something any person wishes upon their children. However, they were very present in the life of my daughter.
Audrey was born with several congenital birth defects, one of which was responsible for her life ending at 18 months of life. This was a tough journey for my family to navigate. We spent many days, weeks, even months apart while I stayed in the hospital with Audrey ensuring she received the best possible treatments and care. We missed family gatherings, holidays, and traditions. Fear seeped into our everyday lives as we wondered would she make it through another surgery.
You may be wondering why we would allow such suffering for our child. I understand that is how her life may appear to someone looking in from the outside. However, she truly did not suffer. Audrey was a happy child who enjoyed time with those she loved. She could be found smiling more often than not. It was common to hear her humming and see her dancing in her own little way.
I had hopes that Audrey’s medical challenges could be “fixed” so that she could live as long as the average person with Down Syndrome, which is more than 50 years. While that was not a part of her life story, I can say that my family was blessed by what was. Audrey was a light in our family. She taught us about acceptance, strength, endurance, but mostly about unconditional love.
The world continues to advance technically, medically, and in so many other ways. It is time for us as a society to catch up with those advancements in our social thinking. Down Syndrome is when a person has an extra chromosome. When a person…
