My husband and I received our daughter, Stella’s, Down Syndrome diagnosis prenatally. We went through a myriad of emotions, including devastation, anger, fright and sadness. I’ve always described those first few weeks as our grieving process. We had to grieve the loss of the baby we thought we were having, so that we could soon celebrate the one we were actually getting.
The truth is, we didn’t know the potential, the possibilities and the joy that would come with raising a child with Down Syndrome. But we soon would! And her life deserved to be celebrated just as much as her two big brothers!
Stella is 9 years old now. She has both exceeded many of our expectations, and challenged us in ways we never imagined. I think our greatest challenges come not from who she is, but from the way the world sees her and what the world expects of her. Stella is who she is meant to be, but unfortunately, much of the world still sees less value in her life because of a diagnosis.
Not only that, but so often, people with special needs or disabilities are expected to fit in with the rest of the world. Meanwhile, the rest of the world is not expected to change or adapt for those people with different needs?
Sadly, this starts early, with school. Our children who learn differently or maybe at a slower pace are expected to “keep up” or they get pushed out into separate schools or classrooms from their peers. Classrooms sizes are not appropriate, accommodations are often not provided, schools are understaffed, and our kiddos suffer for it. Sometimes, they are pushed out based on a diagnosis before even given a chance to “fit in.”
Our children with Down Syndrome weren’t made to fit in, in my opinion. We were all made to stand out as individuals.
It’s just unfair that our world hasn’t yet learned to accommodate all people. And that’s the most difficult part of being a parent of a child with special needs.
Down Syndrome is not scary, it’s not sad, it’s not something to feel sorry about. What is scary and sad is how society reacts to people who are different.
We have come a long way in just the 9 years that I’ve been advocating for Stella. Society is coming around and we are starting to see more and more inclusion in advertising, a start to inclusion in school and work settings. This is exciting. However, we still have a long way to go.
Stella is different and she is unique. She is non-verbal, communicates with sign and a communication device, she flaps her arms and hums when she gets excited. She can be clumsy and sometimes plays too rough. She is also energetic, she is funny, she is sassy, imaginative, sweet, the best hugger and has never met a stranger Stella is wonderfully and fearfully made to be exactly who she is. And her life and all lives deserve to be celebrated and included.
I wouldn’t change Stella for the world, but I do have every intention of changing the world for her.
Tammy Gilles has been married for almost 20 years, has 3 children – 19 year old son, 16 year old son, and a 9 year old daughter. She’s spent most of the last 19 years as a stay at home mom. She’s also a former preschool teacher turned fitness trainer. She’s a member of the State Advisory Panel for Exceptional Children, as well. She has lived in Louisville all her life!
