I still recall what it feels like for time to stop and the air to be vacuumed out of the space you occupy. It was 2014 and I was pregnant with our rainbow baby. Halfway through my pregnancy, I had a weird feeling at an OB appointment. I discussed it with my husband who said I was possibly reading too much into it. I couldn’t ignore my intuition, and I switched doctors at 25 weeks along. My new OB sent me for an ultrasound with a Fetal Maternal Specialist, even though I already had a normal 20-week anatomy scan.
Here our lives diverted to a different path. The ultrasound tech finished and left the room and we waited for over an hour to see the doctor. We felt that something was wrong. When she came in to give results, she started out with how they saw something wrong with our baby’s heart; she paused and then gave us the other news. I thought the congenital heart defect was the only shocking news and I was processing that information when she gave us the second part. With this heart defect, it was likely our baby had Down syndrome. I couldn’t process fast enough what I was hearing and I felt crushed and devastated.
Fast-forward 7 years to this month, October 2021, known as Down Syndrome Awareness Month. I heard once in the Down syndrome community that it should be Down Syndrome ACCEPTANCE Month. I agree. Most everyone is aware that individuals with Down syndrome (DS) exist. Individuals with DS and their families would benefit from acceptance in society. Early intervention services and surgical procedures have allowed individuals with DS to live longer. The life expectancy has gone from 25 to 60. This means you will likely meet someone with DS in your lifetime.
Fostering acceptance looks like inclusion in schools, providing jobs and teaching children that different is OK. People with DS spend much more time learning how to interact with their neurotypical peers than their peers spend learning to interact with them. There are preconceived notions and outdated information about what it is like to live a life with DS.
In her 7 years, my daughter Abby has transformed me. She radiates joy and love. Like her friends, Abby loves to play, dance, swim, ride her bike and more. She has taught our family to enjoy life at a slower pace. Her accomplishments may take longer than her peers but she gets there in her own time and teaches all of us what it really looks like to have grit and determination.
I wish I could go back to that room and tell myself everything will be fine. There will be struggles, like any family, but it will be worth it and full of unconditional love. I hope you will include and make space for people with DS in your life and this world because they will enrich it in ways you can’t predict.
To find out more about Down syndrome Awareness Month and how you can volunteer in our community, or if you or someone you know has a family member or are expecting a baby with Down syndrome and is looking for support, check out dsaco.org.
Ashley Papirtis is the COO, CFO, head chef, homeschool teacher and curator of unique kid art of the house Papirtis. She lives in The Village with her husband and two daughters who enjoy traveling and spending time with family and friends.