by Jordan Foley
Navigating ongoing difficulties can feel isolating, but finding friends who willingly walk through these situations with us can ease the pain of everyday life.
A pair of Cedarville alumni — Carrie Holt of Lewis Center, Ohio and Erika Weise, from Hilliard, Ohio — found themselves with similar challenges of caring for special needs children, and their common steps have led to an unbreakable bond they discuss on the season 11 inaugural episode of the Cedarville Stories podcast.
Weise's firstborn son, Evan, a junior at Cedarville University majoring in political science, is excelling in the classroom while he battles each day with spinal muscular atrophy with respiratory distress. This rare progressive neuromuscular genetic disease only affects 60 people worldwide each year. Although it’s rare, being paralyzed and needing a ventilator since birth brings challenges most people never think of, or experience.
Likewise, Holt's third child, Toby, is 17 years old and a homeschooled high school student. Toby deals with spina bifida, which confines him — like Evan — to a wheelchair and ventilator. According to medical statistics, only 30 people each year are diagnosed with this condition.
Before being parents, Holt and Weise met at a singles church group soon after graduating from Cedarville. They quickly became best friends, as well as their husbands, Bruce Holt and Carl Weise. Ironically, all were attending Cedarville University around the same time. Carrie Holt graduated in 2000, four years after her husband, Bruce, completed his degree. Erika Weise earned her degree in 1999, the same year Carl graduated.
They have experienced life's greatest moments side by side, including delivering their first child one day apart. However, nothing could have prepared them for the challenges they would face together.
Three months after Evan Weise was born, he suddenly stopped nursing. After numerous trips to the pediatrician, the Weise’s were told their son’s liver was pushing upward into his lung, resulting in a collapsed lung, and causing him immense pain that forced him to choose between eating or breathing.
Erika was heartbroken. Carrie Holt and her family provided endless support for Weise's family during this time of grief and even denial. Holt could have never predicted that she would navigate similar circumstances almost three years later.
After a routine 20-week ultrasound checkup for her third child, the doctors noticed something was wrong. After being sent to a doctor specializing in high-risk maternal-fetal medicine, Holt received the news that Toby had spina bifida. Toby was born with a hole in his back, revealing his spine. Since birth, Toby has endured 62 surgeries.
Although Holt was thankful for the ongoing support of her community and church, she still felt that nobody could truly understand her family's daily challenges. After watching Weise's difficult journey with Evan, Holt was fearful of the pain to come with her news about Toby.
Nonetheless, both women firmly believe that God predestined them to become friends and support one another on their journey as special needs moms.
Both mothers are grateful for Cedarville's guidance and assistance for their families. Weise's son Evan has found immense help at the COVE, Cedarville's academic enrichment center, and has found it relatively easy to advocate for himself. Holt's son Toby has received encouragement and ongoing support from Cedarville's community.
"God has created so much beauty out of immense heartache," said Holt. "I openly admitted to Weise that I said some tone-deaf things to her while she was walking through this with Evan. I was beyond grateful she understood how I felt when I began this journey with Toby. Words cannot express how thankful I am that God intertwined our paths."