When their daughter, Hope, was born 10 years ago with the paralyzing condition spina bifida, Judy Morse Crutchfield and her husband Alvin weathered the trauma and adjusted to the consuming and costly requirements of tests, operations, treatment and therapy.
The birth of their son Adrian three years ago brought the joy of having a healthy baby. Two months after he was born, Judy Crutchfield returned to her job as a telephone company service representative, leaving Adrian each day in a neighbor's care.
At nine months, Adrian was well developed and learning to walk--a delight to his sister and parents. Then one day his mother came to collect him from the babysitter and found him unconscious. He had suffered a subdural hematoma, a clot inside the brain that left him partially paralyzed on his left side.
Crutchfield said doctors told her the clot was caused by an injury to the back of the baby's head. According to Crutchfield, the police investigated at the request of Children's Hospital, where Adrian was treated. She said the police found that the injury was accidental, but were unable to determine where or when the accident happened.
Crutchfield said she never found out what caused the accident. She said the babysitter told her that "as far as she knew, it didn't happen" at her house.
"If you have a child who is not handicapped you take a lot for granted. You don't realize" the difficulties, Crutchfield said. Going shopping means having to bypass the escalators and look for an elevator. For the child, it means watching while others romp on the playground, and staying behind when there are class field trips.
Besides the extraordinary medical expenses, doctors' appointments consume far more time than in an able-bodied family. On her calendar, Crutchfield noted a week full of appointments: the neurologist and the urologist for Hope, the orthopedic surgeon and the pediatrician for Adrian and physical therapy sessions for both children.
The double misfortune might have left many parents scarred by bitterness, anger or self-pity. But Crutchfield, who has carried most of the weight of her children's special needs, regards her situation stoically.
Emphasizing the heartening details and understating the painful, she describes the ordeal of having two disabled children.
"We don't know what happened to Adrian. We can't change the fact that it did. This is how Adrian is going to be. . . . I just hope he'll reach the point that he will be able to get around," she said.
"We're just a normal family . . . only physically we're different," she said, shrugging at the shocked or pitying reactions she sometimes receives. "This is the way it is. It could be worse."
Crutchfield describes herself as "a very old 29," but has the youthful looks of a high school senior. She is slender with long, straight brown hair, eyes that are huge, blue and direct. Her composed bearing belies the underlying toughness that is implicit in her history.
While her husband, a clothing salesman, assumed some of the routine family duties, Crutchfield said she has tried to shield him from the more stressful responsibilites.
"It was very difficult. It was a lot harder on him than on me," she said. "I couldn't subject him or anybody else to that." Her mother, she says, was helpful.
A Washington native who chose not to attend college, Crutchfield was married a year after graduating from Wilson High School. She is close to her large, supportive family, including her retired parents, a Federal Bureau of Engraving electrician and an American University payroll administrator, two sisters and two brothers. But Hope and Adrian are primarily her responsibility, Cruchfield said.
"She is a patient, understanding parent who coped with the children, one day at a time, but was also able to look into the future," said Thelma Mullin, administrator of the D.C. Society for Crippled Children where Hope is a graduate and Adrian was enrolled until the family's recent move to Kensington.
"Hope was 3 1/2 when she went to the D.C. Society, and right away I could see improvement. They did a lot for both kids," Crutchfield said of the Easter Seal Society institution at 13th and Girard streets NW. "They got Hope walking and they got Adrian to relax, to sit still and read a book." For herself, she said, she has sought no special counseling or psychological reinforcement.
"I know there are people there. There are shoulders to cry on, but I don't think I need it," Crutchfield said. "I guess I have to be strong for the kids because I'm all that there is, and if I can't deal with it, they can't deal with it.
"We are a normal family. I try to teach the children that," she said. "They are going to be punished, just like anybody else, they are going to have to do their homework and go to bed on time, just like other kids."
Throughout, she has worked for the C&P Telephone Co., the first six years as a service representative, and for the past three in the traditionally male, manual labor position of central office technichian. She was working days, but shifted to night work after Adrian's accident in order to spend the days with him in the hospital, and has remained on that schedule.
"It's a lot of responsibility," Crutchfield said of the physically demanding job, handling "lots of wires, machinery, computers . . . essentially maintaining dial tones" for thousands of phone connections. "If you want the job you have to be able to do it. You can't say, 'I can't lift heavy equipment, I might hurt myself.' I enjoy it."
For more than a year after Adrian was injured, Crutchfield said she could not bear to trust either child to a babysitter. With remarkable calm, she recalled the day she found him lying motionless in the babysitter's arms.
"She said, 'Judy, I can't wake him.' I knew he'd had a seizure, because I had been through that with Hope," Judy Crutchfield said.
"I threw cold water on him, sat down with him in my lap. He wasn't breathing. I gave him mouth-to-mouth resuscitation. . . . He started yawning. Later I learned he was gasping for air." After the third time the baby's breathing stopped and she got it started again, fire department rescuers arrived and took over with an oxygen mask.
In the hospital for weeks after the injury, Adrian was unrecognizable, his mother said, his face puffy from steroids administered to reduce the swelling in his head, and emitting the terrible screeching sounds that follow head trauma.
"He was so tense and bent over to the left side," Crutchfield said. Then one day after he had been there for six weeks, he just started babbling. The doctors were amazed."
Today, Adrian is "very quick, just like a normal 3-year-old, only he can't walk," she said. His learning capacity is apparently intact, but he will have some lifelong physical impairment and is unlikely to have use of his left hand, his mother said.
He wears restraining casts on both legs to relieve the tension in his limbs and lessen chances of having to have surgery later on to lengthen overly taut muscles. Although her children's disabilities are completely dissimilar in origin and effect, Crutchfield said her earler experiences with Hope helped prepare her for handling Adrian's condition.
Hope was born with an opening in her spine, the characterizing effect of spina bifida, a genetically caused condition. Nerve damage caused to the partly exposed spinal cord is permanent, resulting in paralysis of some part of the lower limbs and hydrocephalus (accumulation of fluid in the brain). Nearly all spina bifida victims suffer dysfunctional bowel and bladder muscles, making elimination possible only by catheterization--insertion of a tube directly into the bladder.
"Fortunately," in her mother's view, Hope's paralysis is below the ankles, and she escaped some of the more severe effects of spina bifida. Hope has been in and out of the hospital all her life for operations, including three or four replacements of a fluid-draining shunt and skin grafts for sores that refuse to heal on her feet where she lacks sensation. She walks with the help of braces and has been able to catheterize herself since age 5.
"She was a very good baby. She was in the hospital for a long time, and she did very well," Crutchfield said. A pretty, darker-haired echo of her mother, with the same confident air, she acknowledges matter-of-factly the sometimes unkind curiosity of schoolmates about her leg braces and her sturdy, awkward gait. She wants to become a nurse.
After years in a Northwest Washington apartment, the family moved several weeks ago to a small, one-story house surrounded by green space in Kensington. Adrian, an alert, smiling child, moves swiftly around the carpeted floor, favoring visitors with his newest phrase, "That's a lot of baloney," and demanding to hear his Stacy Lattisaw records. His right hand is calloused on the heel from pulling himself along in a side-sitting, half-erect crawl.
Not the least of Crutchfield's hardships is the financial strain of extraordinary medical costs, and the difficulty of securing appropriate schooling for her son and daughter, she said.
Although her medical insurance pays most of the costs, Hope's leg braces have to be replaced every two years as she grows. They cost more than $1,000 a pair.
"We've been lucky so far. I have insurance. I tried to get Supplemental Security Income (a program of federal aid for the elderly and handicapped), but they base it on income," and she was ineligible, Crutchfield said.
In addition, the process of transferring Hope into regular school from special education classes, where the academic program is less rigorous, involved a "tremendous amount of red tape."
"I wanted Hope to be mainstreamed, and they said she wasn't ready. The whole process . . . was perfectly ridiculous, but we finally got her into the neighborhood school."
Crutchfield said her ability to cope with such trials is founded in determination and "a lot of praying. Mostly it's 'Give me strength.' " But usually, she said, she does not try to analyze it.
"You have to accept it. There's nothing you can do about it. . . . We may not like it--Hope gets frustrated, she hates her braces and crutches--but you just have to deal with it." And she tells herself there is a master plan.
"I think there is a reason. I don't know what the reason is. Maybe later on . . . ."