“NDSC has given us the chance to grow and learn so we can be the best parents we can be for all of our daughters.”
My name is Macy Johnson. I’m a 40-year-old stay-at-home mom. My husband, Mark, is also 40 and is currently a Master Sergeant in the U.S. Air Force. We have three beautiful little girls. Kaylee (9), Kelsey (4), and Kenzie (2). Kenzie has Down syndrome. We love to spend time outdoors playing together and taking care of our rabbits, chickens, and a small garden. Kenzie’s favorite things to do are swing with her sisters and pet the bunnies!
Kenzie is pretty much like any other 2-year-old. She’s sweet, smart, and silly. She loves for us to sing songs and read books to her. Pulling her sisters’ hair and stealing their Barbie dolls is always fun for her, and ice cream is her favorite snack. Kenzie has changed my perspective and how I look at Down syndrome, and I hope by sharing her story, I can positively influence others as well. It’s also helped me realize what’s truly important in life: family, friends, health, and happiness. Oh, and ice cream! Kenzie won’t let us forget about ice cream!
I first heard about the National Down Syndrome Congress through a Google search I did after we first received Kenzie’s diagnosis. I admit I Googled a lot more back then than I should have, but I’m so thankful I found the NDSC website. There’s a wealth of information, no matter what stage you’re at on your journey, but it’s especially great for new parents. There I learned about the annual NDSC Convention. One of our local support groups, the Middle Georgia Down Syndrome Society, gave our family (along with 5 other families!) a scholarship to help us attend this year’s convention in Orlando. My husband and our three daughters were also able to attend; it was our very first time at the convention!
What surprised me the most about the NDSC Convention was the amount of workshops available to attendees. There were so many different sessions on topics ranging from babies all the way through adulthood. NDSC did a great job organizing so many different sessions into such a short amount of time. I only wish I could have attended more! What was no surprise at all was how nice and welcoming everyone was at the convention. Everywhere we went there were smiles, hellos and hugs. I had lots of favorite moments, but the best for me was seeing the self-advocates speak at the plenary sessions. Whether they were introducing another guest speaker or sharing their story, I was really proud and inspired by all of them.
We are looking forward to next year’s convention in Sacramento and we hope to attend. I can’t wait to reunite with friends I met this year, meet new ones, and attend new workshops. The chance to visit California is an added bonus! If you have the chance to attend, by all means get there! Our experience this year was the most memorable Down syndrome related event we’ve ever attended. It was informative, fun and inspiring! NDSC has given us the chance to grow and learn so we can be the best parents we can be for all of our daughters. I hope this year’s convention is only the beginning of many more convention trips for our family.
My husband and I will soon be starting our own nonprofit organization, Kenzie’s Chromosome Crusaders. We will be providing families who’ve been given a diagnosis of Down syndrome with information packets and gift baskets at the time of birth. We are happy to help any family find the information they need or make local connections for support. We hope to inspire and encourage others as they begin their journey with Down syndrome. You can follow us on Facebook at Kenzie’s Chromosome Crusaders.