When my friend Kristy moved in with Community Connections host-home provider Rita Seay six years ago, neither of them could have expected what a life changing event it would be.
Kristy was born at a time when it was common practice for infants with profound disabilities to live in institutions. She grew up in group homes and staffed houses, until 2002, when she moved in with Seay in an intimate family setting called a host home.
Kristy was born with a rare group of congenital abnormalities called Cornelia De Lange Syndrome. Individuals who have CDLS have a range of symptoms. These include delays in most areas of development; respiratory, digestive, and heart defects; impaired cognitive functioning (lowered IQ); and physical symptoms such as short stature and distinctive facial features. Yet, just like any group of individuals, people with CDLS have more differences between them than similarities. It has been Kristy's unique personality, not her CDLS, that has earned her place in Seay's heart and home.
Unfortunately, the leading cause of death for individuals with CDLS is gastrointestinal disease, and many individuals with CDLS only live into their 20s. Kristy already was 30 when she went to live with Seay, but soon, Kristy became ill with what doctors diagnosed as the flu. Seay questioned the diagnosis. Kristy, who does not speak, was becoming weak and nonresponsive. Seay rushed her back to the hospital, where she was diagnosed with a bowel obstruction. Surgery was the only treatment, and Kristy's family decided not to put her through the stress of surgery. She was placed in hospice and given 24 hours to live.
However, neither Kristy nor Seay were ready to give up. Though Kristy was unable to say it, Seay could tell she was fighting to live. Through persuasion, the hospital allowed Seay to start giving Kristy ice chips, then apple juice. Soon Kristy was out of hospice and began a liquid diet. The next ultrasound showed that the obstruction was inexplicably gone. Kristy had managed to defeat death.
That episode was six years ago, and Kristy, with Seay's focused care, still is going strong. Now both women are huge advocates for host homes. Kristy, who once had pages of daily medications, now takes none. Though she cannot tell you in words, she is happy and healthy in her home. Those around her can see her light up when Seay appears.
Seay sees this in many of the individuals with disabilities she knows.
"I see such a difference in them now, being in host homes," she says. "They now have a place where they belong. They have grown to trust us and know without them saying a word, that we understand their wants and needs and will make their lives to be the best that they can be. This didn't come naturally, but with hours of training and compassion for people less fortunate, it's amazing what you see."
For more information on host homes for people with disabilities, contact Community Connections at 259-2464 or email@example.com.
Tara Kiene is the director of case management with Community Connections, Inc.