Most of the months of the year have a designated “awareness” attached to it, and October is no different. What is awareness? According to Dictionary.com, it is the state of being aware, knowledge or consciousness.
This month, my husband and I celebrate Down Syndrome Awareness Month in honor of our oldest son Peter.
Down Syndrome is a genetic disorder where there is an extra copy of the 21st Chromosome. This extra copy creates physical features, such as almond shaped eyes, a small flat nose, small ears, single crease in the palm of their hands, space between the big toe and the next toe, and low muscle tone, as well as, mental challenges affecting their speech and some executive functioning; and for some children, but not all, heart issues, intestinal problems or breathing difficulty.
One in 700 children born each day will be diagnosed with Down Syndrome, and I want the parents of these boys and girls to know that they are going to be ok, and it is NOT the end of the world. It is a more complex world filled with extra doctors’ appointments, therapists and homework, but one that should not be feared. Their children will have physical and mental delays compared to a “typical” child, but with time and practice, they will catch up with their peers. Be patient!
This new world will also come with extra love, hugs, and high fives that never get old.
These parents will develop a sense of courage, love, and perseverance they never thought existed within them. And to the friends and family of these parents, please do not feel or show pity, rejoice, and embrace this special child who was created and brought into this world for all to know and love. Feel free to ask questions and learn more about their child, because in the end, the differences are not as different as originally perceived.
When our Peter was born, we were shocked and, honestly, saddened at first by this news.
My first thoughts were: how are people and other kids going to treat him? Will he be left out? Will he always be cared for? However, his clean bill of health at four weeks premature made me so happy, and those thoughts were pushed aside. As my first born, I just loved holding him and looking at him. His little nose and ears and exotic blue eyes were just perfectly beautiful. When we got home, we did the smallest amount of research because we decided to just enjoy our son and not worry about the future.
Who really knows what is going to happen in a year anyway?!
We did immediately jump in feet first with Early Steps of Louisiana (an early intervention program). It was there we made friends for life and learned more about our Peter and his personal needs than any website, book, or pamphlet could ever tell us. At five days old, Peter experienced his first restaurant and from then on festivals, ball games, parties, etc., and everywhere we went, people were just drawn to him; it was amazing to experience. As he got stronger and able to stand and walk, he developed some dance moves that make your day and is a big hit anywhere there is music. Peter is now three and is a typical toddler with tantrums, picky eating, and too smart for his own britches. He is still not able to speak actual words, and that is truly hard at times, but we don’t need to hear “I love you” to know that he does; we feel it. My one regret is that I was sad those first few hours, and that I don’t have a family picture from his first day of life because of the fear of the unknown. I plan to change that for other moms and dads.
As we close out this month, I want to ask that in the future we claim October as Down Syndrome Acceptance month, and to not only educate ourselves, but our children in how awesome it is to be different. Let us teach them at an early age about respect and being kind and gentle to one another. In the end, we only seek to educate and cure ignorance.
About Courtney Nalty
Courtney Nalty is a native New Orleanian, as is her husband of seven years, Will, and they are the proud parents of two boys, Peter (3) and Benjamin (17months). When not busy with the duties of being Director of the Lambeth House Foundation, she loves to spend time with her family, volunteer, read, workout, watch football, and when she is lucky, curl up on the sofa to watch some classic films with a bowl of ice cream!