Jim and Sara Haynes knew almost from the beginning of their son’s life that something was wrong. Jeffrey would choke when feeding. He had his first seizure at four months and frequent, uncontrolled seizures after that. “We were routinely at the children’s hospital, but the seizures were never under control.” Desperate for answers, they took Jeffrey to St. Louis Children’s Hospital, a premier center for seizure disorders. After a 24-hour seizure study, countless medications and medication adjustments, the seizures still did not stop. The combination of the severe seizures and the medications led to Jeffrey’s intellectual disability.
Jim and Sara said they prayed and prayed and they wondered what more they could do to ensure the best life for Jeffrey. Jim said, “You always want to know why. Did we do something wrong? What is the reason?” Finally, through genetic testing, they learned that there was a gene mutation in utero, not caused by anyone.
The Haynes realized they needed help; they needed a community. “Sara was Jeffrey’s best advocate” Jim said. “She searched out support groups and connected with other families with disabled children.” Through a contact at Jeffrey’s school, Jim and Sara learned about Cedar Lake. Because she knew it could be years before there was an opening, Sara got Jeffrey on the waiting list while he was still a child.
While they waited for Cedar Lake, Jeffrey’s needs continued to grow beyond their ability to provide the structure and environment he needed to thrive. After Sara received a significant health diagnosis, she and Jim knew that they could not meet the physical demands of caring for Jeffrey and in 2001, following a recommendation from a friend, placed him in the care of another program. Every weekend they would go to see him and every time they realized that it just was not the right fit for their son. They constantly worried about Jeffrey but did not know of any alternatives. “We would call Jim Richardson, (former CEO of Cedar Lake) and ask, where are we on the list?” Three years later on the day after Christmas, Jim and Sara were able to move Jeffrey to Cedar Lake Lodge.
At Cedar Lake, they have found a true home for Jeffrey. “They know our son as well as we do.” They learned that everyone there really does care and they know what they are doing. Jeffrey’s seizures are now under control – the best they have ever been. His behavioral problems have subsided because of the structure and programming. “I used to hope that Jeffrey would pre-decease us because I didn’t think anyone would ever love and care for him like we did.” Jim said. “Because of Cedar Lake, I don’t think about that at all. We trust them to love and care for Jeffrey and to always do the right thing.”