Family and friends of Ron Moss gathered Friday in the basement of United Methodist Church in South Amherst anxiously awaiting his arrival.
They had carefully decorated the large room with streamers and balloons reading “Happy 50th birthday!” Moss would arrive at 7 p.m., and the guests were eager to see his reaction of surprise.
A woman walked down the short flight of stairs leading to the basement.
“The van’s here,” she said, signaling the arrival of the guest of honor.
“There’s no way we’re getting him down here,” she said. “His wheelchair’s too heavy.”
The guests good-naturedly moved the party upstairs.
For Moss, who has cerebral palsy, walking down a flight of stairs is just one thing he cannot do.
Cerebral palsy is a disorder that involves brain and nervous system functions such as movement, hearing or thinking. The disorder can cause muscle weakness or loss of movement, tremors, problems swallowing and speech difficulty. It is caused by abnormalities or injuries in the brain that often occur in a child’s first two years of life.
According to www.cerebralpalsy.org, about 10,000 babies born each year will develop cerebral palsy.
Ron’s mother, Claire, remembers when she first found out her son had the disorder.
Claire had difficulty in labor. The umbilical cord, which tangled around Ron’s throat, cut off the baby’s oxygen for 15 minutes, breaths that were vital to his development.
Ron exceeded her expectations. Now 50, he lives at REM Ohio, which provides housing and support services to the developmentally disabled. He works at Oberlin Work Activity Center and has recently completed an autobiography.
Although Ron’s mental functions are high, he is a quadriplegic. He cannot walk, feed himself, hold objects or even speak clearly.
Ron’s younger brother, Dan, did not understand Ron’s condition when he was growing up. Dan said he often questions why it was Ron who was affected by cerebral palsy and not him.
“It’s kind of sad to say, but it was like, ‘Why am I OK and he’s not?’ And I’m sure in his mind it was, ‘Why is he OK and I’m not?’” Dan said.
“Growing up with this has given me a great appreciation for what I can do ... (Ron)’s never opened a refrigerator door. He’s never gotten to hug somebody. Just simple things, that for me, I can’t comprehend how that would be day to day.”
Although Ron cannot open a refrigerator door, he enjoys writing. He operates his Windows 98 computer with a button on the back of his head that allows him to type. He’s spent 19 years working on an autobiography of his life.
According to the autobiography, one of Ron’s biggest struggles is finding people with similar conditions.
“I am 49 years old and I live in a group home in South Amherst,” Ron wrote in 2011. “I am very high-functioning, however, I live with seven other individuals who are mentally challenged. I feel like I’m all alone. I also attend a workshop on a daily basis. I am looking for people that I can communicate with on my level.”
Ron has found more friends among staff members at his group home.
One friend is Freda Stevens, a direct care professional who has been working with Ron for years.
Stevens said Ron is caring, fun-loving and adventurous. Her favorite recollection of their time together is taking Ron to Maumee Park and giving him a memory he would not forget.
“I looked at Ron and said ‘Would you like to go swimming?’” she said, recalling the trip.
Stevens and other care staff put a life jacket on him and held him in Lake Erie so that he could feel the water.
“He said, ‘My arms are free. My legs are free,’” Stevens said. “He’s never got to do anything like that.”
Ron has also struggled with relationships. He has dated in the past, but has not found a woman to share his life with.
Claire said Ron was engaged once, in his 20s.
“I got him a ring and where we lived, we went out in the backyard, and I put the ring on her finger for him,” Claire said.
Ron’s fiancee had cerebral palsy as well, but the two never got married. She died on the operating table, Claire said.
Despite his struggles, Claire said Ron has remained strong and has faith in God.
During his birthday party, Ron joked and laughed with guests. He insisted on recounting stories from his past, even if it took him twice as long as the guests. One of his biggest pet peeves, he said, is when people pretend to understand him rather than asking him to repeat himself.
“Even though I have a disability, I don’t want pity,” he said.
He wrote in 2011, “If I had to pick one positive thing out of my life to be thankful for, it would be the fact that I’m able to think for myself and make my own decisions about what I want and don’t want. I don’t look at myself as being handicapped or mentally challenged. I look at myself as having the want and the need for a physically, as well as mentally, stimulating environment as possible.”
Send your Amherst and Vermilion news to Chelsea Miller, 329-7123 or firstname.lastname@example.org.