At one point, social workers told my mom that they were coming to evaluate the home and our situation. Mom cleaned and straightened until 2:00 a.m. She bathed all three of us and put us in clean clothing so that everything was spick-and-span when the social workers arrived. If the social workers had found fault with the way we looked or the cleanliness of the house, the consequences could have been punitive. What an added burden!
I was too young to process all that was happening. I do remember my mom playing a Helen Reddy record album. The song “You and Me against the World” contains a poignant line: “When all the others turn their backs and walk away…” I now know that song probably expressed my mom’s feelings of isolation as the caregiver for a child with special needs. Amie’s movements were spastic, and she wailed and couldn’t be consoled. Invitations to go anywhere dwindled.
Folks tire quickly under chronic duress, especially in situations that can’t be fixed. It can appear as if everyone else is going on with their hunky-dory lives. My folks went without adequate rest during the night, and the energy they used up facing the relentless demands that each day brought wore them out. And there was no end in sight.
Biblical counselor David Powlison expressed the isolation that comes with caring for a disabled child: “Parents of a severely disabled child face lifelong hardships of many sorts. They also face how they are treated by others. Friends and family distance themselves or feel awkward and don’t know what to say, or offer laughably (weepably?) inappropriate help, or don’t want to be bothered, or offer a thousand suggestions and fixes that reveal utter incomprehension of the realities. Disability is compounded by isolation.”1
Rob and I were too young to give my mom any support, and we could be naughty and a handful. I recall my mother telling us one evening that we had to go to bed at 7:30. I planted my feet apart, put my hands on my hips, and with all the sassiness a five-year-old can muster, declared, “I’m not tired!”
She wearily replied, “You’re not, but I am. Go to bed.”
Rob and I rarely went to sleep as directed; instead, we chose to romp in the bedroom we shared. Night after night my brother and I played an imagination game called “hot lava.” The floor was the hot lava, and the only way to avoid “falling to our death” was to run as fast as we could across his bed, leap across the huge abyss (which was only about two feet) to the foot of my bed, run down the length of it, leap across—and round and round we’d go!
Our enthusiasm for this game got the better of us, however, because we couldn’t play silently. My parents would hear our giggles and chuffing breaths, and when the beds began to creak, Dad would appear at the door.
We were not brain damaged in the same way Amie was, but we had our own brand of cause-and-effect learning disability, though it wasn’t medically diagnosed. Each night we would gape at him, shock filling our wide eyes when he delivered the news that we were going to get a good-night spanking. We should have been able to figure out that our hot-lava jumping and the subsequent punishment were linked. But the next evening when it came time for bed, we would choose to repeat the previous night’s performance.
I’m sure my folks scratched their heads in wonder over our inability to realize that punishment would follow our disobedience. Technically, in our minds, we hadn’t gotten out of bed because we had avoided the floor at all costs!
In the fall of 1970, Mom became pregnant. During a discussion about what to name the baby, Rob suggested Superman. I thought Underdog was perfect, and my mom said, “How about Joseph Brandon?”
I wrinkled my nose, saying, “Nah! That’s a dumb name.” My suggestion for his title didn’t count for much, and Joseph Brandon arrived on the scene in June 1971. The timing of the pregnancy seemed lousy given the craziness of my sister’s health issues, but the gift of a new baby doesn’t always arrive when it’s deemed convenient. He wonderfully completed our family.
When Amie was three years old, her looks favored our mother; her hair had grown in brown and curly, abundant enough to cover her scars. She had large blue eyes that were still beautiful even though at times they would roll back in her head, and the blindness made them seem vacant.
One of my favorite memories of Amie is from this era. She loved to sit on the linoleum floor in our laundry room and play with the door. There was a spring attached to the back of it, so when she swung the door toward the wall, it would bounce back to her. She was tickled at her ability to make the springy boing sound. Her giggle was contagious, and I laughed not because of the noise but because it delighted her so much. She would swing the door over and over and over again, never seeming to get tired of it.
Amie didn’t walk on her own until she was about four and a half years old. Grandma Courtright bought her the special shoes she needed to further correct the clubfoot. Grandma also bought a wheelchair for Amie to ride in. This generous purchase helped my mom when she had to take Amie to physical, occupational, and speech therapy several times a week. The trip required at least an hour on the road depending on traffic, and Mom had three other ambulatory children to manage. Not only were we no help, but we also added stress with our disobedience.
One day my mom lost her temper with Rob and me, and she said she was leaving. Mom walked through the laundry room and went out into the garage as if to get in the car. Rob and I looked at each other, not understanding that she was trying to teach us a lesson. We were supposed to stop acting up and behave; instead, we were more delighted with the idea than we should have been.
“Let’s go live with Grandpa Vance!” I suggested. “Quick, where’s the phone book so we can call him?!”
Rob found the book. I was eight then and able to read, but the way the names were arranged in the phone book confused me. I couldn’t find my grandpa’s name to save us. I dragged my finger up and down the columns of names, and we talked about how fun it would be to live at his house. We would eat gingersnap cookies and play in the big, old box he had in the back of his garage. It was filled with rich, black soil, and worms crawled in it by the hundreds. Grandpa sold those worms to fishermen for bait as a source of income, but to us grandkids they were just a source of entertainment. How amazing it would be to live with him!
While we were madly shuffling pages of the phone book, my mom walked back into the house and saw us. We were disappointed that she was back and that we hadn’t had time to call Grandpa before she returned. Whatever lesson she was hoping to teach us about learning to behave was lost.
I’m surprised my mom didn’t lose it more often. On top of Amie’s health-care issues, my dad, my grandma, and I piled on ours. Dad had rheumatoid arthritis, and it was causing more pain than he could tolerate and still drive a truck. He missed more and more days of work. Grandma Courtright was prone to falling, and the resulting injuries required care. I had asthma, bronchitis, and all manner of gastrointestinal (GI) troubles.
When Amie was five years old, the American Fork Training School for the Mentally Retarded approached my parents about the idea of having Amie live at their facility. My folks were given a tour of the state-run children’s home where she could live, get medical attention, and receive therapy on a regular basis. The staff of the training school would be able to help her walk, feed herself, and use the toilet unassisted. They said my sister would excel in ways that wouldn’t be possible if she remained with our family.
Mom and Dad were faced with one of the toughest decisions they would ever have to make. I know my mom cried often, and both were filled with anguish. After receiving counseling from family, doctors, and friends, and praying long and hard with our church’s pastor, Mom and Dad decided to put Amie into the training school. They concluded it was the best option for all involved.
At the time, I didn’t fully comprehend what was happening. It seemed to me that Amie just up and disappeared. She was home one day and then gone the next. To add to my confusion, we didn’t visit her. The training school had discouraged my parents from doing so, telling them not to come to the institut
e for months. They especially advised my mom to stay away so that Amie could bond with her new caregivers.
I’m sure my parents gave me some explanation, but I wasn’t able to comprehend the myriad factors contributing to Amie’s leaving. To make sense of it all, I constructed scenarios to fill in my gaps. Basically I made up a bunch of stuff that was very real in my day-to-day world. It seemed reasonable to cast the blame for our family’s troubles on my shoulders. I felt it was my fault.
At nine years old, I certainly couldn’t fathom how hard-pressed my parents were. Amie was getting heavier and more unmanageable on every front. They had to juggle the unrelenting needs Amie presented and also rear three other young children who also had health issues, care for my ailing grandma, battle my dad’s rheumatoid arthritis, and deal with crushing financial burdens. I thought I was in some way responsible for my family’s predicament, for whatever bad things might be happening. I have since learned that clinical psychologists call this mind-set “magical thinking.” I definitely carried a load too heavy for my young heart, and I became weepy and withdrawn. I tried as hard as I could not to cry by pinching my arm or biting my lip. But the harder I worked to hold all my emotions in, the more I couldn’t help myself. One of my nicknames in grade school was “crybaby.” The very thing I wanted to do the least was something I seemingly had no power to stop. Most of the time, the circumstances didn’t warrant the torrent of tears I could unleash, but my emotional pain was real and spilled out at the slightest trigger. If I heard it once, I heard it a thousand times from adults: “Stop crying, or I’ll give you something to cry about.”
I recently read Kate Larson’s book Rosemary: The Hidden Kennedy Daughter. Rosemary was considered mentally disabled, having been injured during birth. Her father, Joe Kennedy Sr., was ill advised in his quest to get help for her. It was decided she should undergo a lobotomy to rein her in and “solve” her mental troubles. This was a disastrous solution. She left the family, and some of her siblings didn’t see her for years.
The book recounts Ted Kennedy’s feelings about his sister’s disappearance:
“What Rosemary’s siblings were told about the surgery and its outcome has not been fully recorded, but clearly it was little…. Young Teddy was particularly troubled by Rosemary’s sudden and unspoken disappearance from the family circle. At nine, Teddy feared that he “had better do what Dad wanted or the same thing could happen to me.” There “will be no crying in the house” Joe told Teddy and his siblings, so whatever fears Teddy harbored, he kept to himself.”2
The enemy of my soul, Satan, used Amie’s leaving to wage war in my heart for almost thirty years over my worthiness to be loved and valued. I bought his lie “hook, line, and sinker,” that I had to be perfect or I would be abandoned by my family and never see them again. This was not true, and no one told me this. I figured it all out in my head and drew faulty conclusions, which I was too afraid to voice for fear they would be validated for sure if spoken aloud.
The times I was legitimately ill with breathing or intestinal issues, I was afraid my being sick wasn’t okay. I compared my situation to Amie’s. Her permanent brain damage and physical disabilities were real—no one ever questioned or doubted them. Anything that happened to me seemed to pale in comparison, and I felt as though my own temporary troubles were invalid because Amie’s were severer. I thought my troubles weren’t worth other people’s concern or attention. For years I dealt with a conundrum: I needed nurturing and validation of my own hurts and fears, but I rejected myself as unworthy of receiving care and compassion when they were offered. No one but me was comparing me to Amie, but I continued doing it, consciously or not, well into adulthood.
In 1975, at age thirty-one, my dad became permanently disabled. This resulted in a great deal of upheaval and several moves to find affordable housing. For us kids it meant changing schools and finding new playmates. My mom went to work, and my dad was at home with us, and because of the pain he was in, he was unable to handle a lot of noise and commotion. Basically my parents had to regroup and find another way for my dad to work. He needed a place where he could get training for a job that wasn’t as physically demanding as truck driving. He requested permission from Social Security so he could attend Denver Baptist Bible College. He expected the government to turn him down flat, but the request was granted. My folks subsequently packed everyone up and moved to Broomfield, Colorado, when I was ten years old. We spent the next four and a half years there while my dad went to school and got his degree in pastoral studies.
During that time our whole family would travel back to Salt Lake to visit our grandparents and Amie at least once a year. The trip was about five hundred miles, and because the speed limit was 55 mph, the drive took at least ten hours. We usually left in the evening and drove all night. I know I’m not alone in having a strict dad who wanted to drive straight through. He did not stop driving until the gas tank had to be refilled. Now that we are adults and have children of our own, my brothers and I find it laughable that we were instructed to drink minimally because Dad was not going to pull over every half hour to let one of us kids out to pee. There were quite a few stubby pines along Route 80 in Wyoming, which received a sprinkling because the rest stops along that road were few and mighty far between.
One year my folks brought Amie and her caregiver to Colorado. My memories of this visit are fuzzy. Amie wore thick, dark-framed glasses that “corrected” her vision, but even with them, she was legally blind. When she tried to walk, she was spastic and disjointed. She cried with a loud wail that set my teeth on edge. It was especially painful because we wanted to comfort her but weren’t familiar enough with her to know what was wrong or if indeed anything was wrong at all.
Our visits were infrequent and brief, but my family certainly made the effort. We didn’t travel anywhere else, and with our limited income, these visits were an extravagant luxury. At times Grandma Courtright would buy me a plane ticket so I could fly back alone to visit her. She and I made it a priority to spend time with Amie at the training school whenever I was in town. Because of my own health issues, I was a skinny little thing. In contrast Amie was quite sturdy. My grandma was about as tall as she was round, and she found it a little hard to manage holding Amie’s uncontrolled movements. The encounters were all a tangle of arms and legs, and Amie ended up either cackling or crying. She was a handful, and Grandma and I weren’t too successful in our wrestling matches with her.
One thing that made me laugh and made my grandma frustrated was that in spite of Amie’s brain damage, she knew when she didn’t want to be picked up and would raise her arms above her head so there was no way to get a firm grip under her armpits. She would wriggle her way out of our grasp and be laughing herself silly while doing it.
My grandma was a stoic if there ever was one. She rarely cried, but after our visits with Amie, we would drive from American Fork back up to Salt Lake City, and there would be a moment when a tear or two would make its way down her cheek. She never failed to take me to see Amie or visit my grandfather’s grave when I came to visit. Both things were hard and a source of grief to her but important enough that she continued to do what was necessary.
Whether or not it was my fault, Amie seemed disconnected from me. What I could give to her and what we could mean to each other were not enough to form a satisfying relationship. My magical thinking mind-set had not evaporated. I felt responsible for the disconnect between us. Living with regret is a heavy thing. There was no way to explain to Amie the various reasons why we didn’t have much of a relationship. I didn’t know her because of the lack of personal contact, and she was in no way attached to me for the same reason. I was cognizant and pained by the absence of truly knowing her, while Amie was innocent and did not carry that burden.
While the details surrounding Amie’s life have faded, my memories surrounding her death are vivid.
In 1980 my father completed Bible college, and my folks were not altogether sure what was next.
Then one of our former pastors and his wife offered to pay for our move to Sandy, Utah, where my father could help pastor the tiny congregation. So in the summer of my fourteenth year, my family left Colorado, and we moved into the church’s mission house.
About a year later, on Saturday, June 6, the phone call came. I remember I was standing on the driveway. I had on shorts and a tank top. I wasn’t one for wearing shoes, and so I was barefoot when the phone rang. My mom called for me to come inside, and I ran into the house, the gravel of our driveway pushing into the soles of my feet.
My mother told me and my brothers that the unthinkable had happened: Amie had drowned.
The tragedy unfolded at a watermelon picnic on Friday evening held on the training school grounds. Amie had participated in the celebration, and a caretaker had guided her inside to use the bathroom. Since Amie was capable of doing this task herself, the caretaker left her in the bathroom alone, and then she went back out to check on the other children. Amie finished her business and left the bathroom, but apparently she did not go back out to the picnic area. Instead, she somehow found an unlocked door, which allowed her to slip out of the fenced-in property of the training school.
After she was noted missing, the police, volunteers, and the staff at the training school spent the next fourteen hours looking for her. Amie had wandered onto the adjacent golf course and drowned in a lake. I’m not sure why no one saw her. It would have been obvious from her stature and her awkward gait that she was not a golfer but a child needing supervision. Whatever the circumstances, no one intervened on her behalf.
Her accidental death had been a source of grief and anger and confusion to me for decades. Authorities don’t know for sure what time she found the lake and decided to wade in. No one knows at what point she subsequently found herself unable to cope. My family has speculated that since she loved being in the pool at the training school, she most likely initially felt confident and safe splashing in the water. The terror she must have felt as the water became a death trap makes me shudder. No one has ever told me how deep the lake was near the shore. Perhaps she fell down and wasn’t able to right herself. If she cried out, her voice went unheard and unanswered by human ears. Regardless of the what-ifs, one thing is known: my little sister lost her life that day.
I Will Love You Forever Page 4
