A mother lets go of a disabled daughter -- and both begin a new life BREAKING TIES

THE BALTIMORE SUN

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.

But Valorie quickly developed a protective instinct that drove her to provide impeccable care for Erin and shield her from discomfort. Erin has never had a cavity because Valorie brushed her teeth four times daily. "It was all I could do for her, to keep her immaculate," she says. Just to make Erin's first birthday special, Valorie bought an inflatable swimming pool and let Erin splash around in it in the kitchen. It was the day after Erin had been released from the hospital, where she had been treated for pneumonia and frequent seizures.

That birthday was one of the milestones that would sadden Valorie, conjuring thoughts of what might have been. Erin's fifth birthday was rough emotionally because she should have been starting kindergarten, her 13th because of middle school. On Erin's 16th birthday, Valorie kept thinking about the high school prom and graduation that would never happen, with reminders coming in the mail: gown catalogs, Miss Teen applications and college loan forms.

Schools for the mentally and physically disabled "saved my sanity," says Valorie. She is talking especially of the Cedar Lane School in Columbia, which Erin attended for 14 years. She entered a stimulation program for retarded infants at 6 months old, and continued in therapy and special education programs until "graduating" from Cedar Lane last June.

Though school provided daytime relief for Valorie, life was a struggle for the single mother who cared for young Erin at home without professional assistance. Valorie tried going to nursing school and working as a medical assistant in the early 1980s, but found it too stressful when added to tasks at home. She approached dating warily, greeting each new acquaintance with defensive introduction: "My name's Valorie. I've got a retarded child. Very, very retarded." It scared off men she wouldn't want around anyway, she says. "If anybody was going to meet Erin, I made sure they knew who they were going to meet, that she was a lot more important to me than they were, and that they could take her or leave her."

Richard Haddad took them both. Valorie and Richard met in 1981 at a St. Patrick's Day party at a Columbia pub, and got married two years later. Richard was the only man Valorie brought home who touched Erin the first time he met her. Many people, even men and women who know Erin, are reluctant to do so. "Rich just went over and touched her face on both sides and talked to her, and I remember just being amazed," Valorie says. "So I said, I'll take this person."

Neither Valorie nor Richard expected to start another family, but wound up planning one around Erin. "People asked me, 'How can you do this? How could you get yourself in that situation where you take on that responsibility?' " said Richard, 53, director of administrative services for the Washington Suburban Sanitation Commission. "Erin was just part of the deal." Richard, who had a joint-custody arrangement with his ex-wife, brought his two then-teen-age boys -- Steven and Jason -- into the new union. He legally adopted Erin when she was 13. Valorie's ex-husband returned to Pennsylvania and hasn't been involved in Erin's life.

The mother and the newcomer father had different approaches toward dealing with Erin, but Richard realized there would be certain boundaries. Valorie would be the decision-maker; he would be the helpmate. Richard jokes that Valorie pampered the easily irritated Erin so much that he'd have to run into Erin's room every time a video or music tape ended to keep her from crying. "Val's got this protective fence around Erin and around her relationship with Erin, her routines with Erin," he says. Valorie says she's always accepted and loved Erin unconditionally. Though she realized Erin couldn't return her affection, she still tried to forge a rewarding mother-daughter relationship. She used to put Erin's arms around her neck and squeeze them to feel what a hug from her child was like. Then, at age 16, Erin surprised Valorie by reciprocating for the first time, flopping her arms on her mother's back and hugging with her wrists.

That was a moment to celebrate, because Erin hasn't shown many advances over the years, Valorie says. But she recalls with a laugh when Erin was 15 and said "Mama" for the first time, the one word Valorie had been drumming into her for years. "Now she says it all the time and I wish she'd stop," Valorie chuckles.

Sometimes, there was no choice but to laugh to break the tension and make daily living more bearable, Valorie and Richard agree, because life with Erin could get pretty grim -- as when she got the flu. Typically, Erin would stop eating and drinking, become dehydrated and have to be hospitalized. In 1992, she missed six months of school and had diarrhea for 10 months, the result of antibiotics she took to fight the illness.

Shopping trips with Erin always have been reason to either laugh or become angry. Even now, people's stares still bother Valorie. But on the other hand, curious kids often came over to see Erin, asking questions and reading bumper stickers on the back of her wheelchair.

Having two "normal children" -- Ashleigh and Jonathan -- after 10 years of caring for Erin was "very healing because I do get hugs from my own kids," Valorie says. Valorie and Richard acknowledge that their healthy, active children have been shortchanged in some ways by growing up with a dependent sibling. Yet Ashleigh and Jonathan are glad to have Erin as their sister.

Ashleigh wrote this in a school journal: "I will never forget the wonderful abilities I have. When I wake up in the morning, I can see the trees waving their branches through the window. I can feel the crisp cool air when I go outside. I can hear the blue jays singing in a tall tree. I can smell the sunflowers in the garden. I can taste the wild raspberries. I have a sister who can't do much of these things. Her name is Erin."

Valorie says she could sense how worried Ashleigh and Jonathan were before Erin's six-hour back operation in May 1993 to relieve pressure on her internal organs and straighten her spine. Doctors had told the Haddads that there was a 20 percent chance Erin wouldn't survive the surgery. Before the operation, in which two metal rods were inserted in Erin's back, Valorie wrote a complete funeral service for Erin and prepared Ashleigh and Jonathan for the possibility that their sister would die.

As Erin was wheeled into the operating room, she had on her headphones, and a grin was on her face. She was listening to Ashleigh's chorus class sing "Happy Birthday" to her. She pulled through the surgery.

Sounds are Erin's lifeblood. For nearly all her waking hours, she ,, listens to music, videos or television or slaps her keyboard. She's rarely without headphones and the Sony Walkman she carries in the knapsack hanging on the back of her wheelchair. She likes children's voices, "Sesame Street," Walt Disney productions, cartoons, rock artists from Jimmy Buffett to Eric Clapton, Frank Sinatra, classical violin -- almost everything she becomes familiar with, except . . . "She hates country western, so give her credit for that," jokes Valorie. In Erin's last year at Cedar Lane, instructors used music as a motivator, teaching her to push buttons at a workstation to keep music playing on her headphones or to call for help. The yearlong project's goal was to get Erin to make choices, rather than sit passively.

Her new life in Cecil County is highly structured. Erin resides with one other similarly retarded and disabled young woman from Howard County in a house just up the driveway from the Chesapeake Care Resources' day facility, at which about 30 adults like Erin receive therapy and participate in activities. A residential counselor, who assists the two women, lives in an upstairs apartment.

Erin arises at 6:30 a.m. for grooming and breakfast, then listens to "Barney" on television before going to the day facility. At 9 a.m., physical therapists place Erin on a vibrating table and work her limbs to keep her muscles from weakening, singing the ABCs and saying "ma-ma-ma-ma" to calm her. Erin then goes to a sensory stimulation room with a disco-style mirrored ceiling ball, containers of scents, mood music, plastic strands of lights and lighted, bubbling water tubes. The room is designed to soothe even the most irritable clients. On a typical day, Erin spends her 30 minutes in the sensory room -- the only place she's allowed to suck her thumb -- lying on a blanket with a vibrating "massage wand" around her. After a clothes change and lunch, Erin receives more therapy, then returns home around 3:30 p.m., where the counselor cares for her until bedtime at 8:15 p.m. Medical care is available around-the-clock.

She is surrounded by her prized possessions -- the keyboard, television, videocassette recorder and stereo. She even has had new experiences, including a week's vacation in Ocean City with Chesapeake Care staff, and the discovery of strawberry milk as a favorite beverage.

The Haddads toured many homes and facilities for the disabled in 1993, but knew immediately upon visiting that the Cecil County site would be right for Erin. The activity building was spotless and the developmentally disabled adults were clean, Valorie says. The staff kept the charges busy, treated them kindly and coped calmly with their problems, she says. In contrast, some other facilities smelled like a "barnyard" and were overcrowded with retarded people -- from senior citizens to young adults -- who were being ignored, she says.

Valorie, who is pursuing an art degree at Towson State University, never thought she would be separated from Erin and now says, "I didn't realize how much I'd miss her. I haven't given her up, I've just let her go."

Initial visits -- the smell of Erin's hair and the feel of a hug -- have stirred Valorie's emotions. "I miss her as a person because I love her," she says. "I'd cry when I drove home, not because I want to bring her home, but because I feel bad she has to be somewhere other than home. People ask, 'How can you miss somebody who's never talked to you, who you're not sure knows who you are?' She's my flesh and blood. We have a very deep bond."

Erin might still be at home if not for Richard's persistence in working through the state's bureaucracy for the developmentally disabled, says Valorie, who admits she wouldn't have had the energy to care for Erin on a daily basis and be an advocate for Erin's future. Richard headed the Maryland chapter of Voice of the Retarded and served on the board of the Association for Retarded Citizens/Howard County.

The state Developmental Disabilities Administration (DDA) estimates that about 50,000 Maryland residents have developmental disabilities of some kind. The DDA serves nearly 13,000 of them at 160 state-supported agencies and five state institutions.

4 And now Erin Haddad is among those being served.

Though she has been severely limited by conditions at birth, Erin has made her mother a stronger person and taught her many lessons, Valorie says. Here are a few:

* Never take the miracle of a healthy child for granted.

* Assume that every disabled person has feelings and can

understand you.

* Love your children for who they are, not for what they can do.

* Happiness can be regained after giving birth to a disabled child.

"I'm not bitter about what life has given me," Valorie says. "I'm no different from anybody else. I think that's where a lot of people fool themselves. They say, 'I couldn't do what you've done, you're such a good person, you're chosen.' Well, I'm just a mother who loves her kid, period, and I just did what I had to do."

ADAM SACHS is a reporter for The Sun.

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