One Foot Forward

Nine years ago, when my husband and I first became parents, we thought the most complicated part of parenthood was going to be as parents of girls – twin girls. I grew up with four brothers and Chris, my hubby, had two brothers. I remember thinking, “we won’t have girls; we simply won’t know what to do with girls.” Low and behold, we have two. So far we’ve managed to do a pretty good job, however, I dread the days of their teenage years … but that is a worry for another day.  As many first-time parents are, we were filled with preconceived notions of what parenthood included: diapering and feeding (easy), balancing fatigue and patience (difficult), and “are we ever going to sleep again?” (nearly impossible).

We were wrong. We knew we were expecting twins and opted to be surprised with their gender. We opted out of prenatal testing. We didn’t know we would have even one child with Down syndrome; we definitely didn’t know we’d have two children with Down syndrome. Our lives were completely changed when the pediatrician walked in and simply stated, “the test results came back. They are identical and have Down syndrome.”

Sarah R 080513Our lives have also been changed with the immense support the Down Syndrome Guild of Kansas City (DSG) has provided us. The DSG serves over 1,100 families and provides resources to hospitals and school districts in both Kansas and Missouri. We’ve benefited from numerous seminars ranging from speech intelligibility to building lasting friendships (a common theme in life).

Each year our family has participated in an annual benefit walk supporting the DSG and First Downs for Down Syndrome (FDFDS). FDFDS works with the Kansas City Chiefs’ offensive line and corporate sponsors to raise money that benefits individuals with Down syndrome and their families in the Kansas City community. This year the Step Up for Down Syndrome walk is Saturday, October 26th at Arrowhead Stadium (parking lot “C”). This is a one mile un-timed walk around Arrowhead Stadium. Festivities begin at 9 AM and conclude at 1 PM. Festivities and entertainment include: face painting, clowns, pony rides, moon walks, balloon artists, carnival games, and more. This benefit walk is one of the largest celebrations of Down syndrome in the nation.

This is a day when we take time to convene with family and friends. It forces us to pause and recognize just how many people we have in our corner supporting us, supporting our kids. Kansas City covers a lot of ground and I hope these walks pave the way toward awareness and acceptance of Down syndrome. If you’d like to be part of our team or another team, or to make a donation, check out Step Up For Down Syndrome (our team is Double Dipped with Downs).

For more information on the DSG or FDFDS you can visit their websites here or here.

I grew up in Liberty, just a few blocks off from the square. After a brief stint at Iowa State University, hubby and I returned to the Northland in KC to welcome our twin girls into the world. Soon after we were parents to 2, we were parents to 3. And after a bit of a hiatus, we returned to infant hood with the birth of our 4th child. As our twin daughters have special needs, I changed my course of study and earned an A.S. in Sign Language Interpreting. We used American Sign Language as our primary communication for the first 2 years of their lives. Over the last 9 years since becoming a mom, I've learned (and am still learning) about childhood advocacy, living on budget, baby wearing, cloth diapering, figuring out how to plan/shop/execute yummy/kid-friendly/healthy meals. While we've been life long KC residents, we are continuously in awe of what this city has to offer.


  1. Whether you believe in Hillary Clinton’s “it takes a village …” or not, I think your story is indicative of the fact that so many of us parents – no matter what issue we may face with our children – often need someone or a group of someones to come alongside us and just … live life where we’re at. Thank you for sharing this with us, Sarah!

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