Photo by Sandy Huffaker, Jr.
Billye Giesecke (far right) with her family at Friendship Manor
Friendship Home in National City is easy to miss. On a raised section of I-805, sunlight glints off passing cars and trucks. At Euclid and Eighth Street, the backside of Paradise Valley Hospital, miles of preframed windows and salmon-colored stucco dominate the landscape. In that unremarkable moment between the freeway and the hospital, Friendship Home fits perfectly. Built in 1983, Friendship Home is a single-story building that wraps around itself to face away from the street, its boxy lack of distinction covered with a beige and brown paint job. For a state-run institution that currently houses 99 men and women with severe physical, mental, and emotional developmental disabilities, its invisibility appears intentional. Friendship Home has no need to be seen. Like an exclusive club, those who are meant to be here find it.
A blue Toyota Cressida zipped into the parking lot. The door opened and Billye Giesecke pulled herself out from behind the wheel. “Sorry I’m late,” she said, handing over a manila envelope.
Call me Billye, she said when we met earlier in the week. She gave the unusual spelling of her first name before offering the proper pronunciation (GEE-see-KEE) of her last. A middle-aged woman with short silver-blond hair, Billye was dressed in a blue dress, matching jacket, and no-nonsense sandals.
We met at the San Diego Regional Center (SDRC) on Ruffin Road where I had spoken with Dan Clark, head of the center’s community affairs division. I explained I was writing a series on families with severely disabled children. Since SDRC offers support services to the county’s 12,000 disabled children and adults, it was the right place to find subjects for the series. Clark introduced me to Billye Giesecke, the center’s parent coordinator. As one who’s “been there and done that,” Billye offers peer support to parents; she knows the bureaucratic labyrinth parents face; she also knows the emotional pitfalls that come with having a disabled child.
After speaking for a while, Billye and I agreed on a day and time to meet at Friendship Home where her daughter was in residence. She promised to bring a few letters she’d written over the past 25 years, a correspondence her daughter will never read.
September 2, 1970: You’re almost two days old now. You’re such a beautiful little girl. It’s hard to put into words all the love that I feel for you already. When they bring you to me I can’t help but wonder at the miracle. I can’t remember ever having been so happy. Little Sheri, your daddy and I have so many dreams and hopes for you. We will always love you and never let anything hurt you. You’re our miracle —God’s gift to us.
Six days short of their daughter's first birthday, Billye and her husband, Alan, an El Cajon firefighter with 27 years' experience, would place Sheri in Fairview Developmental Center in Orange County, some 150 miles from their home in San Diego. Later she'd be transferred to Children's Convalescent Hospital in San Diego. Six years ago she was moved again to Friendship Home in National City.
At 27, Sheri Giesecke has spent all but one year of her life in state-run facilities for the disabled. Neither she nor her family fit the profile of those I expected to interview for this series, focusing on parents who’ve chosen to care for their disabled children at home. But as we stepped inside Friendship Home, I knew Sheri's story would be the first and that her tale would be important.
At birth there was no hint that within three weeks Sheri would start to have seizures that escalated to as many as 80 a day. Diagnosed later as infantile myclonic seizures, they left her severely mentally retarded, neither able to hold her head up, sit up, nor walk. Following their doctors' recommendation, her parents placed Sheri in the Fairview center where they were told she would start therapy and in time might be able to return home. Within three months Billye wrote her daughter another letter:
November 18, 1971: We know now that you will never be able to come home — not even to visit. They say it wouldn’t be good for you. The doctors say you are retarded to the one-month level and will probably never progress much past your present level. Sheri, we love you so much and miss you so.
On the morning we met inside Friendship Home, women were on the phones in the glassed-off receptionist area, a uniformed maintenance man wheeled a bucket and mop down the hall, two physical therapists stood deep in consultation. Nestor Domingo, the director of nurses, stopped to share a word before hurrying down the hall. Spots of deep red, trailing plants, flowers in vases, health-issue magazines on mahogany tables — here was the cheery winsomeness of a children’s hospital ward where patients range in age from 6 to mid-50s.
Billye led me to the room Sheri shared with three other women. No one was there. Over Sheri’s bed, nearest the door, a picture of a cuddly puppy was tacked onto the bulletin board with SHERI GIESECKE spelled out underneath in silver glitter. Her closet held a few things on hangers; pants and T-shirts were folded on shelves. Cotton and washable, the clothing looked slightly faded from the harsh detergent and commercial dryers used in their care.
Billye knew the schedule of activities and where Sheri would be at this hour. “Shall we go and find her?”
August 31,1991: Today is your 21st birthday — the age of majority—an adult with a wonderful life stretching out before you. But today is just another in an endless procession of days for you.
Your birthday is always such an emotionally difficult time for me. I remember the day you were born and how excited all of us were. I wouldn’t trade that moment for anything. That day was one of the most precious of my life. I’m so thankful God allowed me to have that moment unmarred by sorrow. You seemed so perfect, the fulfillment of my most cherished dream. But the dream was just that, a dream, one that will never come true. You’ll never be what every mother dreams of her child.
The white linoleum floors gleamed. A faint odor of Pine-Sol filled the air. Billye ducked into the large dayroom where half a dozen patients were installed. A curtain drawn over the window left the room in dim tangerine light. Despite murmurings, the room held an eerie quiet. This same sense of contradiction carried over to the room itself, a child’s world made large. Huge highchairs loomed on wheels, but with adult bodies strapped in. A volunteer guided a heavyset man wearing a helmet (in case he should fall) as he shambled awkwardly across the floor. In the corner were a couple of gait-trainers, devices on wheels like those for toddlers who, once strapped in, can move freely about while being supported. But these gait-trainers — made of metal not plastic — sported thick leather restraining straps and were big enough for an adult man to stand in. “Here she is,” said Billye, wheeling Sheri into the hall in one of the oversized highchairs.
I saw a movie about parents struggling with the reality of a terminally ill child. The mother wrote in her journal that when they tell you something is wrong with your child, time skips a beat, and that when it starts again nothing is the same. I still remember that day when you were five months old and I was standing in Dr. Sheehan’s office when our time skipped its beat — infantile myclonic seizures, profound retardation — and nothing was the same again.
Sheri’s skin had a creamy pallor, the look of someone who has spent all their time indoors. Her chestnut brown hair was cut short. She wore a tan T-shirt and khaki-colored pants. Sound asleep, her head hung to the side and her chin tucked in.
Billye, describing her daughter's seizures, asked me to imagine a big man hitting me in the chest with all his might. “That was what it was like,” she said. Today, besides profound mental retardation, Sheri suffers from cortical blindness and cerebral palsy with spastic quadriplegia.
“Wake up, Sheri. Wake up...”
Billye lightly rubbed her hand over the girl’s bare arm. She ran her fingers through her hair. “The curl has gone out,” she said. “It’s time for a visit to the beauty parlor.” Four times a year Billye packs Sheri in the car for a visit to the Haircut Store in La Mesa, where Janie, her hairstylist, gives Sheri a permanent. “She seems to like it,” Billye said.
At 11, Sheri underwent surgery for curvature of the spine (scoliosis). Her spine was fused and luque rods were wired around it for support. In such cases, the trunk stops growing, but because Sheri’s torso underwent some twisting before surgery, her right breast now lays tucked, hidden, under her arm.
Over the years Sheri has undergone a battery of programs called “communication protocols,” aimed at helping the patient develop “life skills.” In Sheri’s case, all approaches to communication failed. She has remained closed off, without the means to convey her wants, unable to learn from others. When she turned 25, the Gieseckes asked that no more attempts be made to draw Sheri out. She is what she is, they said. Rather than setting goals she was incapable of meeting, the Gieseckes thought it was time to celebrate who she was. The staff agreed.
Yet today Billye expressed hope that there was a means to reach her daughter. “When Sheri is tense,” she explained, lifting her daughter’s left hand, “this hand tightens. She frowns slightly, and her tongue hangs rigid from the mouth. When she is comfortable, the hand relaxes, there is no frowning, and the tongue lays more comfortably in the mouth.”
Billye admitted that it was subtle but suggested that maybe this was a way into direct communication with Sheri. “The staff is withholding judgment until they’ve tested her,” Billye said. “You never know,” she shrugged, rubbing Sheri’s hand and looking into her face. (A week later the staff would report that Sheri’s gestures were no proof of a cognitive response pattern. Her abilities would remain like an infant’s — limited to the expression of comfort or discomfort.)
“Wake up, Sheri,” Billye said quietly. The girl stirred. Her face trembled, muscles shifted like silt just under the skin.
Sheri’s grandparents visit on Sundays. “When Sheri hears their voices, she smiles.” But Billye says Sheri does not like her voice. “For some reason, I annoy her.”
Sheri raised her head. “Yes, Sheri, that’s it...” her mother coaxed. Sheri’s brows were knitted, her lips tight. Like a scowling infant, unhappy thoughts appeared to flit over her face. The eyelids fluttered, and then her eyes opened; they were beautiful—large, a brown color flecked with gold, the whites absolutely clear. While I knew her eyes were intact, that it was at the cortex that her blindness occurred, it was an unnerving moment. Her useless eyes stared straight at me.
“Did you see that?” Billye held her daughter’s hand. “She just frowned. Did you see?”
Whatever I saw had the subtlety of wind passing over water. I wasn’t sure. But Billye had been looking into her daughter’s face for a quarter of a century; she recognized nuance.
“That’s all right,” she soothed. “That’s all right. Do you want to go back to sleep? Is that it, Sheri?”
The head wobbled on its thin neck. The girl tucked in her chin and was gone — returned to a sleep so profound it might have been drugged. I thought of fairy tales about enthralled maidens and unending sleep. But this was the real thing, and there was something terrifying about what I’d witnessed. What must it mean to never fully wake up?
Billye returned Sheri to the dayroom, and we left to get something to eat at Jimmy’s Restaurant on Plaza Boulevard. Our booth was bright; sunlight pouring through the nearby window.
Billye ordered a grilled-cheese sandwich and iced tea. Half an hour with Sheri at Friendship Home had left me wanting something mind-numbingly heavy and sweet: I ordered pancakes with lots of syrup.
I know this letter doesn’t seem upbeat. It’s not a “Happy Birthday” letter, but it’s my heart. Broken and hurt — full of grief. Sheri, how can I bear your being 21? All those dreams and hopes have come to nothing and never will.
And so today I will go to visit you. I will take a cake that says, “Happy 21st Birthday, Sheri.” I will smile and talk to you and pretend this is a happy day, but inside, my heart will weep.
The waitress brought my decaffeinated coffee and Billye’s iced tea. While we waited for our food, Billye spoke of her impoverished childhood in Devine, a small town 30 miles southwest of San Antonio.
“And not just poor. We were dirt poor. Being white was the only thing that kept us from being on the lowest rung of the social ladder.”
In addition to poverty, her family was plagued with mental illness. Her grandmother was emotionally disturbed and an aunt, diagnosed as a schizophrenic, was in and out of state mental hospitals.
“I wanted money like other people, and I wanted not to imagine myself one day in some sort of asylum, talking to myself. For me that was what marriage and a family offered. A house that was nice, a husband and kids who were nice — these would make me normal and worthy.”
Alan Giesecke is a trim man with a red mustache and a contagious laugh. Billye met her husband when she was in college. Sheri was born three years after they married. Everyone was thrilled. She was a first child, a first grandchild, and a first great-grandchild for both families; she was also the first girl in five generations in Alan Giesecke’s family.
Tomorrow is your 24th birthday. Already pain is gripping me. What is the truth about you and me? This is something which I have struggled to understand all of your life. You were my first-born, the promise of the happily ever after that I had envisioned.
I remember a course in college in which we studied the different levels of mental retardation — borderline, educable, trainable, vegetable, basket case. I remember the professor using that term. And the picture that it conjured up in my mind was one of horror. A child who was so badly retarded that it should be thrown away, a “Basket Case.” I remember thinking that would be the worst thing that could ever happen to me. Sometimes, before you were born, I thought about that and fear would fill me up with dread and horror. After you were diagnosed, I wondered if it were my fault that you were so badly retarded. Sheri, I have never said this before, but I wondered if I were to blame for your retardation because I had often thought with dread of the possibility. Had I in some freak way caused you to be handicapped, because I was stupid enough to think about it and fear it?
The neurologist uttered two sentences that Billye would never forget. “He said, ‘She will never be able to give or receive love. Put her in an institution and forget she ever existed.’ ”
On the way home that same afternoon, holding five-month-old Sheri in her arms, Billye sat as far away from her husband as she could. “I was trying to be real small, staring out the window. My breath was coming in gasps, horror-filled gasps. I felt fractured and disembodied. All the parts that were supposed to protect me were gone. I felt exposed, alone, and stunned.” On I-8, heading east into El Cajon, they were between West Main and where the Johnson off-ramp now is when Alan Giesecke turned to Billye. A serious and deeply principled man, when it came to Sheri he would always take cues from his wife.
“So what do you want to do?” he asked.
Earlier, listening to the doctor, it struck Billye that she’d never been worthy. Here, resting fitfully on her lap, was proof of her unworthiness.
“Get rid of her and start all over again!”
She told Alan that was what she wanted to do. “And thus began a process of abandoning you for my sake,” she wrote in one letter.
Two days later Billye found she was pregnant. Caring for one daughter and pregnant with another, she described the next months as unbelievably trying. Sheri was placed in Fairview Development Center a few days before her first birthday. Two weeks later, Billye gave birth a second time.
The San Diego Regional Center where Billye works is one of 21 centers in the state of California for persons with developmental disabilities. Regional centers were started in San Francisco and Los Angeles as pilot projects. The goal was to assist persons with mental retardation and their families in locating and developing services and programs within their communities. The original centers were established in 1965 under legislation sponsored by Pasadena Assemblyman Frank Lanterman. Four years later, new legislation became effective. The Lanterman Mental Retardation Act made education, support services, and home care available to people who had once been assigned to state mental hospitals. The entitlement was later expanded to include those with cerebral palsy, epilepsy, and autism.
In 1970 Alan and Billye Giesecke were advised to place their daughter in a state facility, go about their business, and act as if she had never been born. Today, few physicians would offer such advice.
“I felt like a bad mom,” confessed Billye, speaking over her sandwich. “I’d take care of her laundry, driving the 150 miles to see that she had clean things. I bought her clothes and made sure that all the buttons stayed put. I never forgot her. And I never stopped feeling like a bad mom.”
Throughout this period, Billye was also caring for her second child with whom, at first, everything seemed normal. Tiffany walked and talked early, but by 18 months her language skills deteriorated. She had ear infections and, by the age of three, her speech was poor and she was drooling. Tests showed that Tiffany had 60 percent loss of hearing in both ears; in addition she had mild cerebral palsy and some brain dysfunction. Although in her case the condition was not severe, like her sister, Tiffany was found to be developmentally delayed.
Billye pulled out a wallet and showed me a glamour photo of a blue-eyed blonde in her early 20s. While Sheri looks more like Alan Giesecke, Tiffany favors her mother. “It was like I’d already given at the office,” she said, putting her wallet away. “One disabled child was enough.”
From the age of 3 until she was 20, Billye worked with her second child every night, for two and three hours, to keep Tiffany competitive in school. Today Tiffany is self-assured, articulate, and gregarious. She works as an aide in a preschool and has 12 units of college credit in childhood development. She lives in a private residence, takes public transportation, and handles her own money. According to her mother, she has gone out with boys but does not seem much interested in dating. (The Gieseckes adopted a third child. “She has grown into a profoundly normal teenager,” said Billye, smiling ruefully.)
In 1977, Billye became a born-again Christian. This helped, she said, to understand what was done and why. “I know that I placed Sheri because of my own disappointment. I placed her because of my need to have a normal child. I am not proud of this, and while I don’t forgive myself for abandoning her, I do accept myself, and I accept what I did.”
Three years ago in another letter to Sheri, Billye recounted the day she left her first-born at the state hospital:
You were dressed in that cute little purple gingham top with daisies and little white lace panties. You were so beautiful. You laid in that hospital surrounded by creatures of great horror. The little girl with the huge head, another little girl with the big floppy top to her head, covered by long jet black hair and almost as big as another head. There was that little one with a third leg sticking out of the middle of its chest. The nurses delighted in you. I was told you would get a lot of attention because you looked so normal and pretty and because we had brought you such cute clothes. How perverse! I was giving you up because you were not normal, but they would love you the best because you were the most normal-looking child there.
If Sheri had been born today, a support system would have helped Billye and Alan Giesecke make more informed decisions about their child’s care. At the time Billye was advised to place her child, she thought she was doing the best she could.
“The child I expected never came,” Billye said, referring to lessons learned in counseling sessions and grief therapy. “She is dead. And that person I meant to be with that child, she is dead too.”
It seemed like a tough lesson, I said. Billye nodded. “Yes, it is a tough lesson. But there is a child who was born and she does exist. And the woman who gave birth to that child, she also is alive. Rather than grieving for what can never be, I have learned to celebrate what is. It has not been easy.” Billye and I walked out of the restaurant and into the parking lot. It was going on 1:00 in the afternoon and blazing hot. Billye told me about the day a year ago when she drove to the hospital and climbed into bed with her daughter and held her, whispering from Psalm 139: “I will praise thee; for I am fearfully and wonderfully made: marvelous are thy works....”
Like many other families with disabled children, Billye and Alan and Sheri have profited from the entitlements offered to the disabled over the last 20 years. A decision made so many years ago has come to touch this moment in an anonymous parking lot in National City. The decision, Billye said, was a response to an old paradigm.
“Not so long ago we told ourselves that someone like my daughter was not fully human. That was the old paradigm. Now we speak differently of the disabled, we also act differently, and everyone is better for it.”
Suppose her decision had been different; what would have come from keeping Sheri at home? The shadow of Billye’s hand cut across her mouth as she struggled to answer the question.
“Who can say? The decision my husband and I made to place Sheri deeply affected our lives in good ways and ways that were difficult. And pone of it was easy.” Billye moved her hand, and its shadow dropped to her chin.
“And Sheri? Would I have changed anything with her?”
Billye sidestepped her own question. “Sheri was a worthy child. She will always be worthy of celebrating. It just took me a long time to recognize this and to understand something else.” She looked at me, her blue eyes shaded.
“Sometimes,” she said, “good enough is just that, good enough. You may look back and wish maybe that you’d acted differently, but sometimes good enough is what it has to be.”