Kyle, Steve, Seth, Allison and Susan stand in front of the altar at St. Mary Parish in Salem on Christmas Eve 2023.
By Laura Melius
Steve and Susan Leber’s son Seth was born Oct. 9, 2001, in Pierre. Before his birth, doctors had suspected possible complications, but they were unsure as to a definite diagnosis. Shortly after birth, Seth was diagnosed with congenital cytomegalovirus (CMV), a common virus that can pass from a mother to her baby in utero. “Due to that diagnosis, he has cerebral palsy, deafness, developmental delays, as well as other issues,” Susan explained.
The first days of Seth’s life were especially fragile.
TOUGH MEDICAL JOURNEY
Seth was in the NICU for 11 days, during which he received varied medical treatments, including bilirubin lights to treat jaundice and medications to control his seizures. The Lebers were offered an experimental treatment for their baby son in Lincoln, Nebraska, but they turned it down since it had the potential to be highly toxic.
Even after surviving his first days of life, the Lebers
were told the time they would have with Seth would
very possibly be limited.
“He wasn’t given a very good prognosis, and so we spent the first few years of his life expecting he could pass away fairly soon,” Susan explained. “At first, it was kind of a kick in the gut, but we didn’t have time to feel sorry for ourselves. We never got angry at God or anything. We just kind of went along and did what we had to do for our family. We had to learn to rely on each other more than other families, I think.”
Seth received a cochlear implant when he was 2 years old, which allowed him to hear for the first time. The implant and the ability to hear for the first time greatly impacted his life. The first hospital they consulted turned Seth down for an implant until he could sit up on his own.
“We knew he wasn’t ever going to be able to do that,” Susan said. “We were then referred to Mayo Clinic in Rochester, Minnesota. There, he saw Dr. Driscoll, who said if we were willing to figure out how to keep the processor on his head, he was willing to give Seth a cochlear implant. He has been enjoying the gift of hearing ever since. We are so thankful.”
Raising a child with special needs often requires additional medical or adaptive equipment to assist in day-to-day life. The Lebers are grateful for the help of Family Support 360 in South Dakota, which offers equipment, home modifications, respite care and several other resources for individuals with intellectual or developmental disabilities.
“Family Support helped us get the medical equipment and different specialized items that Seth needs that makes caring for him at home easier and achievable,” Susan said. The organization assisted the Lebers in securing both a ramp for their house and a ceiling lift.
GROWING AS A FAMILY
At the time of Seth’s birth, the couple also had an older son, Kyle, who was 2 years old. The Lebers’ daughter, Allison, joined their family about six years after Seth was born. Steve and Susan have seen that growing up with a brother with special needs has made Kyle and Allison more compassionate towards others. It has also made them more aware of their own abilities.
“They learned that the abilities they have are a gift from God; he has given them their abilities for a reason, and they need to use them,” Susan explained. “We always told them that they can do things their brother is not able to, so be sure you don’t waste your God-given talents.”
As a family, the Lebers like to go camping, go for walks and watch movies together. Seth enjoys camping, as well as going for car rides and watching his favorite show, “Heartland.” He enjoys listening to country music and oldies, and he is able to differentiate between the voices he hears.
While the family attended St. John the Evangelist Parish in Fort Pierre at the time of Seth’s birth, they have attended St. Mary Parish in Salem since 2008.
COMMUNITY IMPACT
“Over the years we have had people in public come up and say ‘hi’ to Seth and us, and they have different stories from their own lives,” Susan said. “Some have had children that are disabled, some have worked with disabled kids and adults, and it’s clear to see how their own lives have been positively affected by their experiences. It’s clear that God has blessed them and us through these shared experiences.”
For others without much life experience with others with disabilities, they may not know how to react, or how best to show their support for those with additional physical or developmental challenges.
“First and foremost, pray for them. It helps more than you know,” Susan said. “Also, don’t underestimate the simple things: a door held open, a smile or a hello. It helps much more than anyone thinks. Over the years, our faith just started to grow and has gotten to the point where we can see how God turned this into a blessing for us. We never would have chosen this life for ourselves, but now we can’t imagine our lives without Seth. It has made us much better people.”
For parents facing an unexpected diagnosis or medical challenge within their family, the Lebers offer this advice: “Don’t be afraid of the challenges. God will carry you through. At some point, you will look back and be able to see all the miracles and the ways God has blessed you due to your situation. Take things one day at a time, if need be, or one hour at a time. God has this and it will all work out.”
