We’re a family of four: a devoted mom and dad (let’s call us Jamie and Alex), an energetic older brother, Max (5 years old), and our adorable little sister, Emma (4 years old). Emma loves playing dress-up, bouncing on the trampoline, and having tea parties with her dolls. And oh, she also happens to have Down syndrome (Trisomy 21), a diagnosis we received when she was just 9 weeks old.
Max is your typical superhero-in-training, with a passion for dinosaurs, comic books, and all things that go boom! We may not fit the traditional mold, but we like to think of ourselves as a “normal-plus” family.
Emma was born at home (a well-planned event, mind you) after a smooth and speedy labor on a beautiful April morning in 2012. Max met her later that day after daycare, and when we introduced them, he simply looked at her and said, “Emmy.” That name has stuck ever since.
After eight blissful weeks of adjusting to life with a newborn, we noticed something unusual at Emma’s check-up: a notable gap between her big toe and the next. A week later, we received the news that would change our lives forever—Emma had Down syndrome.
Initially, it was a shock; a massive adjustment. Our first step? Focus on family life. We confided in our close friends and family, but we took our time before sharing the news widely. We prioritized creating a loving environment and establishing a routine that worked for us, which helped us stay grounded. Once we felt ready, we opened up to others, letting them know we were open to questions and discussions.
We’re incredibly fortunate that both of our families have been supportive, eager to learn about our daily lives and how they can contribute. It’s comforting to know we have a safety net when challenges arise, and they do arise—because that’s life.
As we navigated this new journey, we learned how children like Emma learn and process the world around them. Health professionals and newfound friends have armed us with tools and techniques to help her flourish. This knowledge has transformed our perspective as parents; we’ve become more equipped to nurture her unique potential.
Are there challenges? Absolutely. Some days feel like climbing a mountain. But amidst the obstacles, we feel incredibly lucky and blessed to have Emma in our lives. Is there anything we wish we’d known before this adventure began? Well, aside from the winning lottery numbers, we’ve realized that while the future is unpredictable, we can lay the groundwork to support our children as they grow.
The best approach is to stay present, cherishing each moment together as a family while navigating the inevitable ups and downs.
If we could send a message back in time to ourselves at the start of this journey, it might sound like this:
Dear Us,
Don’t stress too much. You’re going to be just fine. Your kids are amazing, quirky, and sometimes maddening, but they’ll fill your days with laughter. Worry less about the unknown and enjoy every single day. You’ve got this.