Ryan Hamilton spent the first dozen years of his life in the midst of his family – parents Bill and Jodi and older sisters Amy and Tara – in their Conway Springs home. One of his favorite pastimes was spending time outdoors with the family’s horses.

“Ryan used to love watching them,” his mother said recently. “He would holler and make them run. That just delighted him.”

Although Ryan had developmental delays, he continued making advancements and was a very appealing child with his blue eyes, blond hair and big smile.

“Ryan would go up to strangers and talk to anybody,” his dad said. “There wasn’t anyone he didn’t like.”

Jodi Hamilton said Ryan’s head was larger than usual when he was born. He spent several days on a respirator in intensive care and was checked carefully by several specialists.

“They could not find anything to say why his head size was larger,” she recalled. “We worried that he might have developmental delays, and he did. He didn’t suck very well and was always slower. He walked at 18 months.

“Ryan went to Rainbows United Preschool, and that is where he had the first seizure when he was three years old,” she said. Other seizures, including the grand mal type, followed, so a neurologist started him on medication.

Ryan talked but not fluently, was toilet trained, ate normal food and attended special education classes as the years passed.

“All the students accepted Ryan,” Bill said. “As a parent, you worry about how the other kids treat your child, but they really took him under their wings.”

Then one night when he was 12, Ryan experienced a grand mal seizure that caused a deficiency of oxygen so severe the tissues of his body were permanently damaged, drastically changing his life. He was no longer able to walk or talk.

     After that seizure on Oct. 19, 1995, Ryan spent three months in a Wichita hospital. Then he spent nearly a year in the skilled nursing area at Salem Hospital in Hillsboro. Staff there had experience working with a young man with a head injury, but Ryan’s situation wasn’t the same. Eventually the state intervened and decided Ryan should return to his family’s home.

There Ryan had round-the-clock nursing support, funded by the Kansas Medicaid Attendant Care for Independent Living program. ACIL provides support for medically fragile children who require the routine use of a medical device to breathe or for nutrition. Nurses came from Wichita 12 hours during the day, the Hamiltons took care of Ryan from 6 to 10 in the evenings (Jodi is a nurse), and a nurse from Futures Unlimited in Wellington came at night.

“When Ryan was at home, we had more control of what happened,” Jodi said. “There were some challenges, though, such as getting nurses to come to Conway Springs from Wichita, but once they came, they liked it there. Also, at first our house was not really equipped for Ryan. Eventually we built a new house with wider doors, a whirlpool bath for him and other special features.”

As Ryan’s 21^st birthday approached, Bill and Jodi knew they had an important decision to make because Ryan’s funding from ACIL would end with his birthday. They could not afford to pay for his 24-hour-a-day nursing support so had to begin looking for other options. Since Ryan was eligible for Medicaid funding, he could receive community-based day and residential services through the Kansas developmental disability waiver program. His medically fragile condition created a crisis situation, so he avoided being placed on the waiting list for funding.

Bill and Jodi visited several possible residences in Wichita but were not impressed with any of them. Then they heard about Creative Community Living, which provides community supports in Cowley County, just east of Sumner County where Conway Springs is located.

“When we looked at Creative Community Living, it was just so much nicer,” Jodi said. “Ethel (Gates, director of nursing) was very reassuring. Staff members actually came to our house and met with us to help with the transition. They came to meet Ryan and learn about his needs.

“That helped make the transition a lot easier,” she said.

Ryan turned 21 on Nov. 10, 2003, and moved into CCL’s duplex on 20^th Street in Winfield on Dec. 16. Other younger clients who are medically fragile also reside there. A house nurse provides oversight for 20^th and two other residences, Ethel checks in there regularly, and on-call nursing is available at all times.

Many of Ryan’s health difficulties are related to his stomach or colon. Perhaps because of his inactivity, food doesn’t move through the colon like it should.

“His stomach becomes distended, and he is really uncomfortable,” said Christina Martin, a staff member at 20^th ever since Ryan moved there. “Ethel gives him a treatment every other day to relieve the gas in his intestines.”

All Ryan’s nutrition is received through a gastrostomy tube, and he receives medication for spasticity through a Baclofen pump. He must go to Wichita periodically to have it refilled – at first once a month, but now that he has a larger pump, closer to every two months.

Ryan continues to have seizures and is considered legally blind.

“Ryan has many medical nursing challenges that require close monitoring,” Ethel said. “He has delayed emptying of his stomach, which is monitored every four hours, and also has slow motility of the entire gastrointestinal tract. He has Crohn’s disease for which he receives medication. Since Ryan is unable to move and turn himself, staff must reposition him every one to two hours. Skin integrity is monitored each time he is repositioned.”

“The therapy aide comes to 20^th Monday through Friday, and Ryan loves that,” Christina said. “She does his range-of-motion exercises and puts him on his tilt table. He’ll smile so you know he likes it.”

Those smiles are one of the rewards for providing support for Ryan, she said. “The smiles he gives you just warm your heart.”

Ethel agreed.

“Ryan is a joy to take care of and truly has the sweetest smile,” she said. “He does respond when we talk to him.”

Ryan, whose nickname is “Buzz,” sometimes goes to a Lutheran-sponsored service for people with disabilities on Thursdays, to some CCL activities in Meyer Hall, and on short trips to places in the community. Last December he attended his sister’s wedding in Conway Springs.

“Every Sunday you can count on his mom to come see Ryan,” Christina said. “Usually his dad comes with her, and sometimes the whole family will come. Usually they’ll go to his room and do his physical therapy exercises, read the paper, listen to the radio or sing some songs they sang to him at home. He likes music.

“His family is always so nice,” she said. “They are very dedicated to Ryan.”

According to his mother, Ryan especially enjoys having his young nieces and nephew visit.

“His face lights up when he hears their voices,” she said. “I probably pick on him too much, checking to see if his nose is clear, if his ears are clean. We talk to him about what’s been happening. Bill talks about his horses and his roping. We talk about what the grandkids have been doing. We check to see if there’s anything he needs and anything we could be doing.

“It was tough to have Ryan move away,” Jodi said. “It was a big adjustment for us. We were used to seeing him every day, and we were so used to having people in and out of our house all the time. We had so much time to ourselves after he left we felt a little guilty.

 “We would rather have Ryan at home,” she said, “but one of the things I had to learn was that things were going to be different” than they used to be. “I can’t always control things. I just have to trust that the staff will take good care of him. CCL’s a wonderful place. They do very good work. I just had to let go and put it in God’s hands.”

Bill said that years ago a pastor counseled them that everyone has a cross to bear in life. The only difference is how you carry it. That bit of wisdom has helped the Hamiltons deal with what happened to Ryan. Difficult as it has been, Bill said they have learned to accept his disabilities and keep doing the best they can.