HURTS, TEARS COME DESPITE GOSPEL KNOWLEDGE, TESTIMONIES MEMBERS WITH DISABILITIES AND THEIR FAMILIES ADD A DIMENSION OF UNDERSTANDING TO THOSE AROUND THEMAlthough members who face certain challenges may be comforted, encouraged and sustained by gospel knowledge and strong testimonies, many still find they are not immune to hurts and tears along the way.
Following are accounts from some members, representative of many throughout the Church, who have encountered particularly difficult challenges, either in their own lives or in the lives of those they love.*****
`One of the least' wins others' love and caring
Robert and Karla Hoyt recently maintained a vigil at the bedside of their 9-year-old daughter, Julie, who was in a life-or-death struggle with a paralyzing stroke and other complications following open heart surgery in February.
Julie has Down syndrome, complicated by multiple disabilities and ailments. The Hoyts also have an adopted daughter, Lori, 6, who has Down syndrome.
Lori is described as the child who has the more typical Down syndrome characteristics. "She is very calm and sweet, and extremely social," said Sister Hoyt. "And she has very good health."
Julie, however, has had serious health problems since birth. In her first year, she had four major operations, three on her heart. She received her first pacemaker when she was 6 1/2 months old.
"Julie's challenges resulting from Down syndrome are complicated with many autistic-like characteristics. She is very aggressive and often pushes and hits," Sister Hoyt said of Julie before her last operation. "This doesn't lend itself very well to social acceptance.
"It's easy to serve the Loris of this world, but the Julies are a different story. Most of the time I just want to wrap her in a warm blanket and take her away to a magic place where we can wait out mortality and then watch her walk forward to receive her crown."
When the girls were babies, the Hoyts didn't have many problems taking them to Church. However, as Julie got older and became more aggressive and difficult to manage, special arrangements had to be made.
After the Hoyts asked leaders in the Pierce City Ward, Joplin Missouri Stake, for help, the nursery leader, Michele Lassiter, who had so unconditionally loved Julie, asked to be the teacher for Julie and Lori. Lori has since been mainstreamed into a regular Primary class, and Julie has a new teacher, Janice Falls.
"Janice is a champion," said Sister Hoyt. "She is a leader who has been extremely strong and thoroughly dedicated in her past callings. She has gone from leading many to serving one."
Sister Falls said, "I appreciate the scripture that reminds us that when we are serving `one of the least of these,' we are serving the Savior. But serving someone like Julie isn't always easy. It's very important that we learn to serve people with disabilities.
"At times, I can look in Julie's eyes and there will be a flash - I can almost see that little spirit inside her. Sometimes, for just a moment, her eyes will communicate to me a `thank you,' or an expression of sisterhood.
"I soon realized that having a lesson plan is not important. What is important is that I meet Julie's needs, and what Julie needs is love."
Sister Hoyt and Sister Falls spoke of how ward members, especially Primary children, have accepted Julie. "One day, she walked by Trevor Petersen, who is 8. She hit him hard, right in the chest, and walked on, never breaking stride," said Sister Falls. "I brought her back to apologize. Trevor said, `That's OK, Sister Falls. I know that's how Julie says she likes me.'
"When the older Primary children learned Julie was going to have another operation, they fasted and prayed for her. They continue to pray for her."
Boundless love, unfulfilled dreams
Heinz and DeAnna Horstmeir of the Worthing Ward, Columbus Ohio North Stake, are parents of Scott, 20, who has Down syndrome.
Sister Horstmeir spoke of the pedestal on which many people tend to place parents of children with disabilities through comments such as: "Only you could handle this," and "This child went to the right person." Some, especially Church members, say, "The Lord has sent him to you because He knows you can handle this challenge."
She realizes people's thoughts and intents are kind, but she feels such comments sometime have a restraining effect.
"Because people have put me on such a pedestal, I don't dare share my problems with them," she said. "They've built me up too much. We, as Church members, tend to want everything to be positive. That makes it very hard to talk about problems such as having a child with Down syndrome. We don't want to be built up as `super parents' and we don't want our son built up as `an angel' who is `so sweet.' We're just people."
She spoke of the changing attitudes toward children with Down syndrome. "When Scott was born, doctors and nurses and several `experts' told us to put him in an institution, that it would be bad for our other three children if we took him home from the hospital," she recalled. "Then a little night nurse came in and said, `Your baby is swallowing very well. Do you want to see him?' She brought him in. Once I nursed him, I had to take him home. We thought he wouldn't walk, talk or be toilet trained. Whatever he did was joyful to us. When he pulled himself up to stand, I sent letters to those who said he would never do anything."
Sister Horstmeir spoke of the "up and down" process of raising a child with disabilities. "It's not a matter of just growing into it and accepting it," she said. "I remember taking him in to get his picture taken. The photographer said, `Can't he hold his head up?' I went home and cried.
"My sister-in-law had a baby about the same time. When I saw pictures of her child and made comparisons in regards to accomplishments, it became really difficult. Then when it was time to start school and tests were given, I saw that he wasn't doing half as well as other children; that just tore me apart. At home, you kind of forget what it's going
'Marvelous friends' helped along the way
Terry Frost Milner, now in her mid-20s, has not walked since she was 10 when her legs were paralyzed as the result of a spinal fusion performed to straighten her spine. She was stricken with cancer at age 4. By the time she was 6, she had had six major operations.
She spent her teen years in a wheelchair, saddened that she could not walk, run, dance or play sports. However, she discovered she had talent in music and in the arts.
She went through many stages, at first resenting the fact she couldn't do all that others could do. Then she decided she wanted to be independent and do things for herself. "I discovered a lot of the things I thought I couldn't do, I really could do," she said.
She said that realizing she is a child of God and knowing that the plan of salvation teaches that all will be restored to her helped immensely. Also, many Church members tried to involve her in as many activities and events as possible. She served an 18-month stake mission in Adelaide.
About three years ago, she and Michael Milner were married in the Sydney Australia Temple. "Michael and I both have strong testimonies of the gospel," she said. "We dated before his mission. When he returned, we prayed about our decision to be married."
At the wedding reception, the groom picked up his 90-pound bride and danced the wedding waltz with her in his arms.
Friends and family have become accustomed to seeing the couple together, going piggy-back style as he puts her on his back when they go places not accessible to wheelchairs. "I love walking along the beach with Michael, especially at sunset," she said.
She is grateful for "many marvelous friends" who have included her along the way. "At times, I felt left out because I couldn't do all the things they could, but most of my friends included me as they would any other friend. They disregarded my disability. To my family and friends, and especially my husband, my disability doesn't exist. I don't consider myself disabled because I can do most things now that anyone else can do, except walk."
Just 'a word, a smile boost our spirits'
ST. PAUL, MINN.
John and Rita Saumweber of the St. Paul 3rd Ward, St. Paul Minnesota Stake, have two adopted daughters and a foster son. All the children have disabilities.
Tricia, 17, is hearing impaired; Mary Beth, 13, has Down syndrome; and Tony, 8, has multiple disabilities that require round-the-clock care.
"Tony can't do anything for himself," said Brother Saumweber as he held the dark-haired, bright-eyed youngster in his lap. "He can't talk; he can't even eat. He uses a feeding machine."
The Saumwebers take turns getting up during the night to check on or tend to Tony. With too few hours of sleep, they begin their day at 4 a.m., preparing his feeding tube. Then Tricia is up, getting ready for seminary at 5 a.m.
Brother and Sister Saumweber, who met while working with people with disabilities, became foster parents about 15 years ago, when a child at a school where one of them worked needed a foster home.
"That got us started," said Brother Saumweber, who now works with the city of St. Paul in finances. "We've had children come to live with us ever since. Tricia and Mary Beth are now ours. Going to the temple and having them sealed to us was one of the most wonderful experiences of our lives."
The Saumwebers feel that although love might conquer all, it takes more than that to raise three children with disabilities.
"Sometimes I think I'll scream if one more person comments on how patient I am," Sister Saumweber said. "I work at being patient. Sometimes I feel almost overwhelmed. Then Mary Beth will say a complete sentence, or Tricia will do something thoughtful, or Tony will smile. That's all John or I need. That little bit gives us a boost, lifts our spirits. It's enough to go on again."
They spoke of the gospel and Church programs that have helped them. "We're excited about what's ahead for our family," Sister Saumweber said. "We look forward to the celestial kingdom. We talk about when Tricia will hear, when Mary Beth will be able to understand things, and when Tony can walk and talk.
"I have the same hopes any other mother in the Church has. I hope I'm teaching my children to be responsible, caring, thoughtful people. I hope they will stay strong in the Church. I hope they can find acceptance and love, and a place in the world where they feel like they belong, and that they can have friends."
Learn sign language, welcome deaf friend
Alofa Solitua, who is profoundly deaf and is unable to speak, found a group of ready-made friends when he moved into the Parramatta Ward, Sydney Australia Parramatta Stake, six years ago.
There to help him adjust were Jay Parton and other young people then in their early teens. Jay and the others learned sign language so they could communicate with Alofa, understand his needs and convey their friendship.
This exercise of love and helping paid great dividends as Alofa became part of the group and realized his ability to lead a normal life. Even though he still doesn't utter a single word, he is able to communicate with sign language and lip reading.
Elder Alofa Solitua entered the Missionary Training Center in Provo in January in preparation for serving in the California San Jose Mission. In February, Elder Jay Parton entered the Missionary Training Center in Sydney in preparation for his mission to the Australia Brisbane Mission.
'Spirits, mind more powerful than bodies'
With only a limp, Vickie Bateman enjoys playing golf with her oldest son, camping with her family, teaching children to sing and painting murals for local dance recitals. She also works part time, is a member of the high school band booster club, and is second counselor in the Young Women presidency in the Shelley 1st Ward, Shelley Idaho Stake.
"I'm one to believe that our spirits and our minds are much more powerful than our bodies," she said.
She speaks from experience. On Jan. 22, 1977, while collecting samples from a filtering device at a potato processing plant in Shelley, her right foot was caught in a screw auger. By the time she freed herself, she had lost her leg at mid-thigh.
During the four-week hospital stay, the doctors and nurses were amazed at her positive attitude. "I was just so thankful to be alive. I appreciated my life and didn't mourn the fact I lost my leg," she recalled.
Her attitude remained positive during the physical therapy, when she had to build up the muscles in her stump and learn to use a prosthesis. However, she recalled the day she got home and "started walking toward the house, the prosthesis literally fell off. I went in the house and threw it. As I learned to walk on it and learned how it functioned, then I could handle it. It just took a little time."
During the 14 years since the accident, she's pretty well had the attitude she could do anything she wanted to do.
The hardest part, she noted, is when her disability slows her down. "It's hard when my leg gets sore and I've got things to do. I literally have to sit down and rest. I really like to be busy and accomplish a lot."
Sister Bateman described her greatest need over the years is "just to feel accepted, like anybody else. One of the ways I find to be more comfortable is to let people know what happened. Then I can act like myself."
Sister Bateman and her husband, Larry, have three children: Dustin, 17, Valerie, 8, and Ryan, 3. She is expecting her fourth baby in June of this year.