“Emily was born at 26 weeks gestation,” Barb said. “She was delayed, and everyone said she had something called ‘preemie syndrome.’”
At Emily’s 15-month checkup, what her parents thought was an ear infection, turned out to be something far more serious.
“We were told that Emily’s infection had cleared but she had Cerebral Palsy (CP)” Barb said. “I had no idea what that meant at the time. It was devastating.”
Suddenly all the hopes and dreams the couple had for their daughter were dashed. Doctors told Barb and Tom that Emily would never walk and would always be “very low functioning.”
As she grew, Emily was delayed but not as much as her parents originally thought she would be. The family found support in their local church in West Carrollton and their community and family, all of whom helped them cope and work through their initial grief of having a disabled child.
“Emily would tell me her ABC’s and could count to 25 at 18 months,” Barb said. “I was shocked at what she could do.”
At every therapy evaluation, Emily’s physical limitations were apparent, and she was always quiet, giving therapists the impression that she didn’t know what was going on around her.
“We went to Dayton Children’s and Cincinnati Children’s for a first and second opinion,” Barb said. “Doctor started talking about bones and muscles they would cut, and I had to take my daughter home.”
The couple got a third opinion when Emily was age 2 — at Riley Hospital for Children in Indianapolis.
“The doctor picked Emily up and put her on his lap,” Barb said. “He told us we had a very intelligent little girl.”
Barb said although this made them happy, the fact that Emily would likely never walk made them angry.
“This marked the beginning of our acceptance phase that Emily would always be different,” Barb said.
By the time Emily was 5, Barb said her own heart began to soften, and she had worked through much of her grief. She decided to surrender her life and her daughter’s life to God.
“Life is about relationships,” Barb said. “We live in a demanding world where we are measured on our performances. Emily has always excelled in relationships and her love for the Lord.”
As Emily progressed through public school in West Carrollton, Barb knew she had to change and lead by example so she could be the best advocate for her daughter. Though Emily had an Individualized Education Program (IEP) that detailed her multiple disabilities, her kindergarten teacher believed that she would have no issues graduating from high school and going on to college.
“That teacher rewrote Emily’s IEP and that changed the course of her education,” Barb said. “Instead of being in a multi-handicap only classroom, she also went to regular classes.”
And Emily was starting to express herself and her feelings, letting teachers and her parents know what she wanted and didn’t want to do. She got her first motorized wheelchair and often refused to move out of classes she enjoyed — particularly reading, which has always been her favorite.
As a fifth grader, Emily was tested for gifted classes and started in the program the following year.
“To be honest, this wasn’t on my radar,” Barb said. “Emily had excellent teachers, but we weren’t sure she was ready.”
Though Barb said they knew Emily was intelligent, what they didn’t expect is how much their daughter would enjoy school and socializing. In middle school, the goal was to prepare Emily for college. She learned about Cedarville University from a good friend who attended there.
“I knew from the time I was 9 that I was going to go to Cedarville because everyone was so accepting,” Emily said.
Emily accepted her disabilities and started to have hope for the future. She graduated from Cedarville University in 2011 with a bachelor’s degree in communication arts and earned her master’s degree in Christian theology and non-profit management in 2017.
“I had a moment in 2012 when a new ministry vision came to me,” Barb said. “It was a nonprofit designed to empower the ‘differently enabled.’”
In February of 2015, Empowering the Differently Enabled (EDE) became an official 501(c) (3) nonprofit organization. The Shanahans began building the board of directors and officially moved to Cedarville in 2017.
Today as Barb, Tom and Emily launch EDE, Emily is also writing her first children’s book. She is an active blogger and motivational speaker and is sharing her story to help inspire others who are also “differently enabled.”
“It turned out that God had a much larger plan for us and Emily’s disability ended up being a gift,” Barb said. “It transformed my marriage, my parenting skills and all of our lives.”
For more, log on to edehope.org.
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