Marni Asplund-Campbell, editor
Red Roses for a Blue Lady
Carol B. Quist
[p.144]On a cold, clear afternoon in February 1968, I drove with baby Kenneth from West Caldwell, New Jersey, to the pediatrician’s office in Northfield. Bill came in his company car from Newark. I don’t remember who tended our older four sons.
I missed the exit on the traffic circle and had to round it twice. Still, I arrived on time; punctuality was paramount with this doctor.
And although he, too, was on time, he was extremely nervous. He kept saying, “I don’t know you very well.” Finally he gave us the results of recent hospital tests.
By this time, five months after Kenny’s birth, Bill and I knew something was wrong. This baby didn’t seem to feel pain. He never cried to be fed or changed. He didn’t nurse. After months of trying new formulas, cleaning up projectile vomiting, and emptying his bowels by inserting a gloved finger in his rectum, we decided he had a digestive malformation needing major surgery. Wrong—he had a different kind of malformation, one that could never be corrected in any way—Down’s Syndrome.
All the way home, Vaughn Monroe seemed to keep singing on the radio, “Red Roses for a Blue Lady.” It always means bleak weather, numb thoughts, and rounding and rounding that traffic circle.
Frequently after that day I would sit crying in the rocker, feeding Kenny, willing the almond-shaped eyes to change. Sometimes I pretended they were belatedly rounding, but I knew nothing was happening for Kenny as it had with his four older brothers.
They were relieved to have Kenny home. They’d vigorously protested, “Mommy, get baby. Mommy, get baby,” when I’d left Kenny at the hospital for those tests. Will was now six, in kindergarten.
[p.145]Doug was over four; Jerry was three; Ron was just past two. They eagerly held Kenny and offered toys.
My husband Bill’s despair was not eased by learning that the hospital had added television and telephone charges to Kenny’s bill.
At my next checkup the obstetrician asked how the baby was.
I said, “He can never be anything.”
He looked shocked, perhaps sincerely.
After I explained, he said, “Well, usually the nursery staff picks it up, but I guess this time they didn’t. And I certainly didn’t notice anything.”
I suddenly remembered his words the first time I’d visited his fancy Montclair, New Jersey, office. I’d been seven months pregnant and had just moved from Arizona. My neighbors had highly recommended him. When I’d said so, he’d preened a little. “Well, I pride myself on delivering a good baby.”
Something had made me respond, “Of course, you can only deliver the baby who’s there.”
After a pause, he’d said he was Jewish and had just learned that the cafeteria in Montclair’s Mountainside Hospital where I would deliver Kenny spread butter on the hamburger buns. He loved those hamburgers, but because Jews couldn’t eat dairy products with beef, he’d have to give up the hamburgers.
That same February we learned the Kenny’s-age baby of church friends had cerebral palsy. Unaware, both sets of parents had been comparing one handicapped baby’s growth against the other’s.
As soon as possible, we took Kenny for complete evaluations. Physicians and social workers told us to put him in an institution. One said, “He’ll probably never walk or talk, he’ll keep having sehim respiratory and other illnesses, and his death will be a blessing.” Once Kenny became so ill I did call the police and doctor to ask, “What do I do if someone dies in my home!” I can’t remember what they said.
Repeatedly evaluators said that we needed to provide a normal life for our older children, that those boys had promise and needs that Kenny’s problems would compromise. They predicted that we, especially I, would collapse under the burden of such a child.
Mother, who worked for the mental health department at a Salt Lake City hospital, asked the top doctor to evaluate Kenny. We’d [p.146]come to Utah on vacation; our families now saw what Kenny was like. This doctor was even less encouraging than the New Jersey specialists. He told me, “You have a fine husband and normal children who need you and whom you need, unencumbered. Just as normal intelligence ranges, so does retardation, and Kenny is lowest in the low range. Don’t hope.”
Mother seemed relieved by the confirmation and began trying to enlist foster grandparents and other help for me in New Jersey.
Nothing came of it. Even children of our church friends were reluctant to babysit.
So we began visiting facilities for people like Kenny—and worse. Devastating—the deformities, the clutching, the babbling. Visiting battlefields would be less gruesome because I know many of those wounds heal.
We learned about costs, differences between private and state placement, and waiting lists. At home we boarded over the stair railings because Kenny would climb out and pose six feet up. He would let himself out of the house and run in the street. He would push his diapers off anywhere. He would pull things from tables or shelves. He climbed a bookcase and nearly pulled it over.
His brothers were tender with him. They knew he didn’t wreck anything on purpose. When our oldest, Will, found his 1,000-piece jigsaw puzzle on the floor, he went rigid in rage. Then he picked up Kenny and took him upstairs to his crib. Had another brother been guilty, we would have had to call the paramedics.
In September 1972, a week before his fifth birthday, we and the state of New Jersey placed Kenny in Ann’s Nursery in Norwalk, Connecticut. We paid a monthly fee calculated after deductions for taxes and other expenses, including those for our two sons with hearing losses and special shoes.
People soon said, “Carol, you’re a different person, alive.”
“You look years younger.” I noticed it in Bill. Gradually, we realized that we could do nothing to help or hurt Kenny in this life, that professionals may be right about governments needing to help citizens with such burdens. All we could do was visit regularly and pray he was cared for well and kindly.
As requested, we didn’t visit Kenny for a month. He cried when we [p.147]did. Will and Jerry, the brothers who could always comfort him, failed. I failed. Perhaps we confused him. Perhaps he could only remember people who cared for him daily.
Still, he was our child, and we needed to see how he was now and then. His brothers loved kicking autumn leaves over the lawns around the nursery, playing in the snow, and using the playground equipment. They loved the books and toys in the playroom.
But Kenny was too mobile and big; the facilities and programs weren’t suitable for him. New Jersey officials soon found space in Keystone Residence in Burdens, Pennsylvania. But they said Bill and I had to transfer Kenny ourselves. We believed them then. My nightmares began. Always the same, the concern bringing Kenny home for a holiday during which a catastrophe keeps us from ever taking him back. I wake up sobbing.
Nevertheless, one Saturday in 1974 we packed our four older sons and a picnic lunch in our dark green Rambler station wagon and left home for what I expected to be a daytime nightmare. We would drive two hours to Connecticut, four to Burdens, and two back to West Caldwell. I prayed I could still feed Kenny the baby food I’d brought. I had always had to feed him first, alone. And if anything upset him, he would refuse to eat. Then only crawling into his crib would comfort him. I prayed he would nap in the back of the station wagon, or play, or at least not cry.
Amazingly, the trip went well. We made the usual picnic and play stops; the older boys seemed to have a great time. Kenny ate and slept, and at supper time we delivered him to Keystone. The several-storied building on a busy city street was as welcoming and well cared for as it had been on our previous visits. Staff members were thoughtful and reassuring.
Over the next few years, Kenny made progress, slowly. Almost a year passed before he could feed himself with a spoon. Toilet training took far longer and may not yet be complete. He suffered far less illness than before. We visited him once a month or so, trying merely to interact without causing tantrums. Naturally, his brothers played mainly with each other.
In 1976 we moved to Saudi Arabia. In 1978 we returned to New Jersey. In 1980 we moved to Utah. Kenny’s placement was fine until we [p.148]sold our New Jersey home and weren’t taxpayers any more. New Jersey had already paid Connecticut and Pennsylvania for out-of-state care but would not let Utah pay in the same way. It would not let us leave Kenny where he was comfortable and progressing. We begged. No, officials said, we must move him.
Bill said, “No, if you want him moved, YOU move him.”
He recalled that uneasy move from Connecticut to Pennsylvania. He was fed up with bureaucracy. He thought they were bluffing.
Regardless, he was firm. Financially and emotionally—I still have nightmares—we couldn’t move Kenny this time.
Finally, the Keystone and New Jersey people arranged to fly Kenny to Salt Lake City. They said ticket money came from Kenny’s Medicare or like account. I wonder—because for months afterward, we received from Keystone, supposedly for Kenny’s clothing, bills that were old enough to have been paid from his account before his move. I was so angry I refused to respond.
Meanwhile, to find a place that would take Kenny, Bill and I visited Utah State Social Services offices many times and filled out many papers. We visited some facilities. Finally we chose West Jordan Care Center and made arrangements. It was a one-story residence, secure, well kept up, seemingly well-staffed. Kenny would share a room. The date was set for the care center supervisor to meet us and Kenny at Salt Lake International Airport. Bill had to go to work but said he would meet me at the airport. Mother said, “You’re not going alone. Pick me up on your way.”
Our extremely concerned son, Ron, cut school or work, I don’t remember which, to go with me. I kept wiping tears; I hoped I would be able to recognize the care center director.
“I’ll drive, Mom,” Ron said.
“Thanks, but I’m fine. You can drive home, though,” I added, remembering he’d been the last to get a license and didn’t have many chances to drive.
At the terminal we three walked to the designated gate and waited for arriving passengers to file by. Bill wasn’t there. Neither was the care center director.
Finally from the plane came a blonde woman holding Kenny by the hand. She introduced herself as a social worker. I don’t remember her [p.149]name just her navy suit and flashy scarf and that Kenny was in a sweatsuit that he’d wet. She said she hadn’t had any clothes to change him into. Considering her profession and that situation, I still can’t imagine why.
Speaking to him, I took Kenny’s other hand. We started down the concourse to baggage claim. Mother and Ron walked beside me. The care center director ran up. “I’m so sorry. I was stuck in traffic.”
Mother looked skeptical, then relieved. I mentioned the wet clothes. The director looked at the social worker. She said, “Well, I have to get the next plane back.”
So we left the airport. I think we gathered Kenny’s bags and went out to help him get into the care center director’s car.
Before I could think of following along to the care center, Mother said, “You’re not going home hungry. I’m taking you both to lunch at Sizzler.”
Ron looked at his watch. I think he wanted to try to catch his later class at the university. But because his father had never appeared, he decided against letting me drive home alone.
We ate well at Sizzler; I loaded up on the salad bar as usual. We talked of many things, including Kenny. We had already prayed together that he would be all right.
Of course someone could physically injure Kenny; a subsequent social worker told me he suspects past abuse. And maybe someone could impede the progress even of one already so mentally and physically stunted. Bill, whose work had stalled everywhere all day, burst into tears when he finally got home and learned we’d coped.
And Kenny had to move again within a year. West Jordan personnel said he was too dangerous to himself and others. He would climb on others in their beds. He was also often sick—the change in climate, the doctors said.
“You’ll have to take him home,” officials told us.
“No, we don’t have to take him home,” Bill said. “He’s a ward of the state of Utah. Now you say you have papers we need to sign, and we will sign them, to help transfer Kenny to another facility. But we do not have to take him home, and you know it.”
So Kenny went to what was once called the Training School and is now the Development Center in American Fork. He lived in Quail [p.150]Run unit, and we got reports about his progress. Sometimes we attended a meeting about plans for his future training. We received forms to be signed by those who take relatives home for Thanksgiving, birthdays, Christmas. We began to get letters as if Kenny were writing to tell “Mom and Dad about the neat activities I am doing.” I thanked them for the news but said, “Please don’t pretend to be Kenny actually writing.” They seemed offended.
Kenny has since had several operations and sometimes wears glasses. Dentists have to anesthetize him even to clean his teeth. Bill always went to the clinic or hospital to sign papers. Yet I was listed as the “responsible party” and received all the forms.
About ten years ago, we were asked to meet to review Kenny’s candidacy for living in a group home. It was the only time questioners hadn’t started by asking how old I had been when carrying Kenny, whether the pregnancy had been normal, and what my feelings had been. Kenny was present. I could restrain him by holding him with both hands and bracing myself.
The panel asked about Kenny’s progress. I said they knew better than I. They asked my opinion about Kenny’s placement in the group home. I asked what abilities and cognition such residents need to have. They told me. I asked if they thought Kenny had them. They said no. I said, “We’re all wasting our time.”
In June 1989 we were invited to Kenny’s high school graduation. The state has to try to teach them until they reach age twenty-two. Bill had to work. My father (my mother had recently died) would not let me go alone. It was very hard to see Kenny wear a cap and gown and know it could not signify what it does for normal people. It was very hard to restrain him while we waited to have pictures taken. He was young teen height and nearly stronger than I. Dad, seventy-nine, suffering from shingles and a strained back, could not help.
Our experience and feelings are ambivalent. From the beginning, we had been counseled to write Kenny out of our wills and trusts and never to assume guardianship for him. Apparently the reason is that when we die, the state retains responsibility for Kenny. At the same time, those institutions have insisted that we assume responsibility for him. For years they requested information about getting Kenny on our medical insurance plans. We hadn’t any. And they kept asking for data [p.151]only they could know.
Dad continued to send birthday and Christmas cash for Kenny. We learned that if we gave more than $20 in a quarter, the state confiscated it. His picture remains in our living room. Grandchildren know his name. I used to include his news in letters.
None of our family or friends ever criticized us. We’re more fortunate than a woman in our present church area who was scorned and ridiculed for placing her son in state care. Under pressure, she brought him home—and nearly lost her health—before placing him again. She nearly collapsed as a church speaker later enthused about the rewards of caring for a “special” child at home. Afterward I said to the visitor, “Three of us here have been unable to care for such children at home. In future talks consider mentioning that not all situations are alike—as fortunate as yours.”
“No,” she returned. “It was the greatest blessing.”
A church official’s talk in a subsequent general conference talk followed much the same line.
Two years ago the group home question came up again—under what pressures to mainstream more handicapped citizens I don’t know. We were surveyed about Kenny’s participation. We said we didn’t think he was qualified. Somebody did. We were ultimately given a contact name and phone number for his new location in Bountiful, Utah. We haven’t received any letters, though.
In 1997, when our son, Ron, and his wife, Loree, were getting help for their autistic-tendency son, Ron told a social worker that he doesn’t even know where his Down’s Syndrome brother is. Ron said we parents didn’t know, either. The social worker was appalled, said, “Give me his birth date and name, and I’ll find out. You have a right to know that!”
Near Christmas 1997 I sat with a cousin and her husband at a fundraiser. The husband, who works for a firm that does programs for people like Kenny, said, “Well, today they asked us to run some address labels for our clients, and your name was on the list. I hadn’t realized that Kenny was yours.”
I swallowed, “Well, how is he doing?
“Not much, not really well.” My cousin-in-law shrugged.
“I know we can’t expect much, but—” I remembered how his skin had cracked and bled in this dry climate. I told about the states that [p.152]didn’t care about anyone or anything but their tax rolls.
“His age may have been the factor. We’ve just placed a young woman in a facility in St. George, Utah, so she can be nearer her parents who moved to Las Vegas. She’s past her majority.”
I thought of our second son, Doug’s, recent remarks. “You should be glad you have Kenny. You have it made with him. He can’t give you any trouble. It’s the rest of us boys you have to worry about.”
Well, we’ll see when we get the letter.