Meant to Be: A World Down Syndrome Day Story
Today's blog is written by Katelyn Herrygers, author of I Am Me.
For as long as I can remember, I wanted to be a writer. From a young age, books captured my attention in a way that inspired me to try to create my own. Made-up short poems and stories dot my memories of my childhood.
When my husband and I became pregnant with our son Jameson, or as we call him, Jay, in 2017, we were ecstatic to start the journey of growing our family. After over a decade of dating—Ben is my high school sweetheart—graduating with undergraduate and graduate degrees, living in an apartment, buying our first house, getting married, and buying our second house, a baby was next on our list.
All went well for me during the first trimester. Morning sickness didn’t plague me, but fatigue did! During our 20-week ultrasound in the middle of the second trimester, the tech found some inconsistencies in Jay’s nuchal fold—the area of skin behind the neck. I go into further detail on my blog in Our Diagnosis Story, but here’s the short version: We were sent to a specialist for additional testing. After a blood panorama, we learned that our baby would have a 99.98% positive chance of Down syndrome. There are a lot of emotions at play when you’re pregnant; throw in a diagnosis and those emotions work on overdrive. Ben and I spent the next half of our pregnancy taking in the news, researching what we could and coming to terms with our new reality.
Having a child who has Down syndrome wasn’t part of our life plan, but life has a funny way of giving you what you need, when you need it. Jay is exactly that—he’s what we needed then and he’s exactly what we need now.
Just a few months after Jay was born, the writing bug struck me. With this new life and enduring love I felt for this human we created, I couldn’t help but want to capture my love and support of who he was and who he is. Jay is meant to be. Thus, the beginnings of I Am Me/Yo soy yo began to form on scraps of paper. I tried to go the traditional publishing route but ran into roadblock after roadblock. The process was draining and so disappointing, I nearly stopped trying to do anything with I Am Me. But after locating a local Grand Rapids-based illustrator, my “book” was starting to become a reality.
Fast-forward to today, I Am Me/Yo soy yo has been widely used in celebration baskets via nonprofit organizations and community foundations around the U.S. and in Ireland. The whole theme behind the book is awareness, acceptance and celebration of people: “You are you and I am me, just exactly how life is meant to be.” It’s about loving who you are and those around you.
Books for Joy and Learning
Books are a tool we use to support Jay’s learning and development.
We used videos, songs, and flashcards to help him connect objects, foods, animals, etc., to learn Baby Sign Language. It was a win to get Jay to sign a word like, “more.” Later, it became a win for Jay to sign a statement like, “More please.” And then later it became a win for Jay to verbally ask, “Book please” or “More books.” I see communication as a progression learned through experience. For me, and I think for Jay as well, books create organic experiences to make the process of learning to communicate engaging and fun.
We have books that are well worn and well loved—he knows what he likes! The moments I like the best are when Jay decides to put his toys down and look at his books instead. In those instances, he sits—often with his legs crossed and the book on his lap—and uses his pointer finger to glide across each page, reading in his own way. Some words he utters correctly, doing his best to put in the hard work of shaping his mouth, lips and tongue to make the necessary sounds, filling in others with a form of his own language. Either way, he’s learning the art of reading and what it means to enjoy time exploring, imagining and learning just by sitting with a book.
Mark Your Calendar!
March 21 is World Down syndrome Day each year. The day is selected to represent Trisomy 21, or 3-21, which is Down syndrome. For individuals who have Down syndrome, they have an extra copy of the 21st chromosome. Join people around the globe to celebrate differences and supporting the Down syndrome community and Rock Your Socks!
I am so thankful to be able to share my love for Jay through the book I Am Me/Yo soy yo, and to help encourage the fact that we are all here, super, and meant to be.