The Haddad family's van rolled up Interstate 95 not long ago, 19-year-old Erin and her two younger siblings in the back amid boxes full of Erin's clothes, linens and stereo equipment.
Erin was on her way to start a new life -- and so was the rest of the Haddad family. But Erin's mother, Valorie, who had struggled so many years to put painful feelings of guilt and sorrow to rest, couldn't help thinking it shouldn't be like this.
This was the day Valorie would break the ties that had bound her so closely to her daughter for 19 years, an extraordinary relationship based on unconditional love and near-obsessive devotion. This was the day she should be taking Erin to college to begin an independent life of limitless potential, Valorie thought, not to a Cecil County group home for profoundly retarded and physically disabled adults.
For Valorie, the 60-mile trip from the Haddads' Columbia home marked the end of 19 years of daily spoon-feeding, diapering, dressing, grooming and lifting the daughter incapable of the simplest tasks, the daughter with a one-word vocabulary who can barely return affection.
For Valorie's husband, Richard, and her other children, Ashleigh, 9, and Jonathan, 8, Erin's placement with the nonprofit Chesapeake Care Resources Inc. would bring a more normal family life, including spontaneous walks in the park or trips to the mall without logistical nightmares.
This is the story of Valorie's despair and rejuvenation, of a family coping with life under the burdens of caring for a disabled daughter, and of the wrenching decision to place her in the hands of others.
"The only way to survive living with Erin each day is not thinking about the next day, what happened to her, what she should be doing," Valorie, 42, says as she and Richard unwind on the deck of Erin's group home in the town of North East later on the day of the trip. "I've relived the moment [of learning about] her brain damage a million times. The injustice of what happened to her is fresher."
The Haddads worked seven years for this trip, knowing that competition for limited spaces at state-supported facilities would stiff. They wrote to the governor and met with Maryland's top health officials, working the case up the state's long waiting list, now estimated at 7,500 for people needing residential or day services, or both. They toured facilities for the retarded and disabled, searching for peace of mind and a clean, safe and loving environment in which Erin would receive individual care.
Erin, who was born on May 27, 1975, should have been the healthy child of an uncomplicated pregnancy but suffered brain damage at birth, Valorie says. A trust fund established as a settlement of a malpractice lawsuit has paid for many of Erin's medical expenses -- and time and a second marriage have helped ease Valorie's pain.
Because of the injury to her brain, Erin has cerebral palsy and also is cortically blind, which means her brain doesn't interpret images. Moreover, she has a seizure disorder and scoliosis, curvature of the spine, which required a life-threatening operation in 1993. She can't use her arms to push her wheelchair or feed herself. She can't chew because she has spastic epiglottis, which inhibits her ability to swallow. She can eat only bland, warm, pureed food.
It will cost about $63,000 to care for Erin for one year at the state-financed Cecil County facility, not including any medical needs, which would be covered by federal programs. The Haddads spent nearly $12,000 on Erin's special needs during 1993, including $8,100 for a nursing-home stay after back surgery, and $1,500 for diapers. Those expenses were paid through the malpractice settlement, with other medical costs covered by family health insurance.
Years ago, the reality of her first child's medical problems sent Valorie into an emotional tailspin. "I had Erin when I was 23, and time just stopped right there, and I became 75," says Valorie. "I'll never be that old again. I was old in body, old in mind. I was dragged out, exhausted, [having marital problems], depressed." Valorie's first husband was a high school beau from the Pittsburgh area. They moved to Columbia in 1973. When she became pregnant, she assumed that the outcome would be a healthy child and happiness. But Erin's problems put unbearable strain on the marriage.
"I thought we had done everything right," Valorie says. "I took all my vitamins, went to all my prenatal visits. I was very naive. And it really hit me between the eyes. I was shocked." The marriage crumbled several years after Erin's birth under the weight of guilt, denial, anger and sadness.