Welcome to the Family
Katy Sursa is dedicating her life to helping those with special needs thanks to her inspiring daughter, 3-year-old Emma Kate, who attends The Allen School in Little Rock. Katy works at the school as she also works toward a master’s degree to achieve her dream of running a nonprofit dedicated to those with disabilities.
SAVVY: WHAT IS YOUR DAY-TO-DAY LIKE?
KATY SURSA: My day starts at 5 a.m. with coffee! I wake Emma up at 6 a.m. so we can get ready. It takes her a little bit longer in the mornings because I let her try to get herself dressed, teeth brushed and general morning routine. Then it’s off to school!
YOUR DAUGHTER WAS DIAGNOSED WITH MOSAIC DOWN SYNDROME. WHAT WAS IT LIKE TO GET HER DIAGNOSIS? It was horrible at first. Doctors, at least the ones I had, do it wrong. My OB’s nurse called me and told me there was an abnormality on a blood test early in pregnancy. In her words, “There could be something wrong with your baby.” That’s the news every mother dreads. My husband, Wade, and I saw a perinatologist from 16 weeks gestation until delivery. Emma Kate had a birth defect called duodenal atresia (basically a tissue blockage in the bowel), which she was able to see on the 4D ultrasound prenatally. Because of this blockage, Emma Kate had surgery three days after she was born. She also had a very large hole in her heart called a ventricular septal defect, which required open-heart surgery.
WHAT ADVICE WOULD YOU GIVE TO OTHER FAMILIES WHO RECEIVE A SIMILAR DIAGNOSIS FOR A CHILD? I would say, welcome to the family! There is an unspoken, often unseen, network of families of people with Down syndrome—and this is true for any child with special needs, no matter the age. We are here. We support each other. We listen to each other’s pains and joys. We celebrate everything!
DESCRIBE THE CARE AND SUPPORT YOU HAVE RECEIVED AT THE ALLEN SCHOOL. HOW HAVE THEY BEEN ESSENTIAL TO YOUR CHILD’S PROGRESS? The Allen School is technically a developmental day treatment facility for preschool age children. Their aim is to never turn away a child due to their diagnosis or ability. My daughter is no exception. No hurdle was too big or problem so complicated they weren’t able to tackle it full force! Everyone at The Allen School, from the chef to the teachers to the therapists to the administrative staff, all the way to director Suzy Benham, genuinely cares about each child.
WHAT IS YOUR SUPPORT SYSTEM LIKE? Like I mentioned above, the Down syndrome community seeks out those families of people with Down syndrome. I am the state coordinator of education and advocacy for the Arkansas Down Syndrome Association, a member of Buddy Talk and other online support groups. My family is great! My parents live in Hot Springs and come over all the time. They’re a very big part of Emma’s life. Above all, my partner and husband is my rock. Emma Kate is fortunate to have a father as active and involved as he is.
WHAT IS YOUR FAVORITE THING ABOUT BEING A MOM? Watching her learn. She learns so quickly and picks up on things I never would have imagined. She teaches me daily to slow down and notice people. Because of the way Emma Kate pays attention to everyone she meets, it’s not uncommon for me to stop with her and say hello to anyone or everyone we meet.
WHAT MAKES EMMA KATE AMAZING? Even as an infant, she has had an extra-sensory ability to pick up on people’s emotions.
WHAT DO YOU LIKE TO DO AS A FAMILY? We like to hang out at home mostly. There are occasions where we’ll go to the zoo or a museum, but honestly, Emma Kate is happy just to play at home and be around family.
WHAT DO YOU WANT READERS TO TAKE AWAY FROM YOUR STORY? Children with Down syndrome are not anomalies. They’re not much different than other children. Families with a child with Down syndrome just want to be seen. They want to have the world notice they’re there, and that their family is no different. We want teachers to feel empowered to be a wheel, which moves our child’s education down a path to independence. We want the community to understand that some behaviors are unavoidable and we want to apologize upfront for the day our child will do something seemingly socially inappropriate because they don’t understand. We want to also never apologize for raising our child the best way we know how. We want the government to understand that we have no interest in freeloading on government funds. We pay a monthly premium for our Medicaid services under the TEFRA program because our private insurances could NEVER cover the bulk of services like therapy and day-habilitation, which our child deserves.