In 1940, when Karen Killilea was born three months premature and developed cerebral palsy, doctors encouraged her parents to put her in an institution and forget about her. At the time, her condition was considered untreatable, and institutionalization was the only recourse. But in a revolutionary act of faith and love, the Killileas never gave up hope that Karen could lead a successful life.
Written by Karen’s mother, Marie, this memoir is a profound and heartwarming personal account of a young mother’s efforts to refute the medical establishment’s dispiriting advice, and her daughter’s extraordinary triumph over seemingly insurmountable odds. Marie’s activism spread awareness of the mistreatment of disabled people in America and led to the formation of multiple foundations, including United Cerebral Palsy.
A larger-than-life story, Karen tells of a family’s courage, patience, and struggle in the face of extreme difficulty. The New York Times wrote, “You’ll want to read it most for Karen’s own words: ‘I can walk, I can talk. I can read. I can write. I can do anything.’”
About the Author
Marie Killilea is the author of two bestselling books, Karen and With Love from Karen. In 1940, Marie’s daughter Karen was born three months premature, measuring only nine inches and weighing less than two pounds. It would take years for doctors to diagnose her with cerebral palsy, and even more to find proper treatment. When the family was told that they should put her in an asylum and forget about her, which was what many others did at the time, they refused and instead took on the daunting challenge of treating her at home. Confined to a wheelchair since her teens, Karen learned to walk with crutches, write, and even swim, after years of painstaking work. She later became a receptionist at the Trinity Retreat House in Larchmont, New York, where she worked for almost forty years. Marie died in 1991, followed by her husband two years later. Karen resides in an accessible apartment in Larchmont, living a happy life, continuing to be an inspiration to all around her.
Read an Excerpt
A True Story Told by Her Mother
By Marie Killilea
OPEN ROAD INTEGRATED MEDIACopyright © 1983 Marie Killilea
All rights reserved.
The first stag line in my daughter's life was composed of eleven men, varying in age from twenty-four to sixty.
Few debutantes have been the recipients of such mass masculine interest upon their presentation. Few have received such careful scrutiny, evoked such exclamations of admiration, such expressions of welcome.
All eleven were unaware of the myriad charms of the other young ladies present. Karen had a quality of attractiveness, which, since the time of Adam and Eve, has not been surpassed.
What new baby hasn't?
This somewhat unusually large attendance at a rather usual miracle was due to the fact that, like any prima donna, she heralded her arrival and then kept her public waiting almost two weeks. The stage was set, the stagehands ready, the actors knew their lines and places. Then, with true Gaelic dramatic timing, she arrived just when the audience had hit its peak of anticipatory excitement. Contrary to custom the drama was enacted almost three months before the announced date.
Ten of the assembled men were medical doctors. The eleventh could also rightly be called "doctor," since his degree was Doctor of Divinity. He was a priest and was present by special invitation. If Karen's appearance on stage was to be brief and fleeting, as predicted, Jimmy and I wanted to make sure she made her exit straight back to where she came from. We wanted her baptized.
Karen was born a few minutes before noon. A minute morsel, she weighed under two pounds, and measured nine inches from the tip of her tiny head to her infinitesimal toes. She squalled immediately and energetically, in what may have been an indictment of the many dire prophesies concerning her survival.
I was wheeled back to my room. The early sun bounded off the cretonne curtains and put a frosty veneer on the maple chairs and bureau. The nurse helped me brush my hair and tie a ribbon around it.
"We put on my bed jacket" and "We put on some powder and lipstick." And then she left. I now understood what a friend of mine meant when he said that nurses lead plural lives.
I lay back still, bathed in happiness. It was like a brittle shell, this happiness, and I felt that motion or sound might shatter it. A very big part of it was the vast relief that Jimmy would not have to experience again the agony of bereavement of last year when our second daughter died. Today was a miracle and I could still feel the surge of unbelievable wonder and joy evoked by the baby's lusty yell.
My mind flitted from one thought to another and finally fastened on little Marie's striking resemblance to me and the wish that this little mite would look like her daddy.
"Girls should look like their fathers," I muttered sleepily.
If she did she'd be lovely. Jimmy has a long face that is both strong and sweet, a "Barrymore" nose, firm chin with a deep cleft, and eyes that are blue as a summer sky, very deep-set and slanting just a little to follow the fine line of high cheekbones. His ears are set well back, beautifully shaped and close to the head.
She could adopt any coiffure and if her hair were rich and wavy like his — What more could a girl ask?
We had been married six years and my heart still picked up tempo when I thought of Jimmy. I certainly knew what I was doing when I proposed to him.
I heard a step and a gentle knock and I opened my eyes to see him hesitating at the door. He was carrying a huge box and I knew from my previous confinements that Jimmy's pleasure could only find expression in four-foot gladioli of the more vivid hues.
He came over to me quickly, put the flowers on the foot of the bed and wrapped his arms around me.
"You're prettier than ever," he said and pulled a chair beside the bed. He took my hand and held it in both of his.
There was a knock and I called, "Come in."
It was Dr. John Gundy, our pediatrician.
"What do you think of our child? Is she as pretty as Marie? Did you count her fingers and toes?"
"Yes, yes, and blue eyes — what else?" he answered, smiling.
He sat down on the foot of the bed and I waited for him to express his delight.
"Good heavens, is that all you have to say?" I asked him, laughing a little since his enthusiasms are more tempered than ours.
Jimmy got up, picked up the flowers and handed them to me. I took off the lid and there they were, all eighteen of them, a dozen blooms to the stalk, salmon, yellow and crimson.
"They're exquisite. You may kiss me again."
John took the box and put it on the bureau.
"You're quiet — even for you," I chided him.
Jimmy sat down again and picked up my hand.
John came back and stood leaning on the foot of the bed.
"Did you ever see anything so tiny?" I asked him.
"Never," he answered and looked at me with curious intentness.
"While you were making yourself beautiful," he smiled, "Jimmy and I were talking."
Jimmy gave my hand a little squeeze.
"You must realize, Marie" — John spoke gently — "she's not out of the woods yet. As I told Jimmy, we've been friends for a long time, I know the best policy for all of us is an honest evaluation of Karen's chances."
I had been right — it was a brittle shell, and sound had smashed it.
The room had grown very warm. It was going to be a scorcher. John shifted his weight and it occurred to me that everything he did seemed slow until I realized he never made a superfluous motion.
I looked at Jimmy. He was watching John and he was pale. I suddenly remembered that he'd been pale when he came in.
John's voice was calm and soft. "I've already told Jimmy that no premature baby is considered a well baby and the chances for survival are pretty much determined by weight. Any infant under a five-pound birth weight is considered premature, even if it's a full-term baby."
Jimmy lit a cigarette and put it between my lips.
"It will be a day or so," continued John, "before we know whether her lungs will fully expand, or whether she can take nourishment."
"What else may go wrong?" I asked.
"Honey, we can't be sure of her vision for some months," Jimmy replied. "As John has explained it to me we have a real struggle on our hands. Every ounce gained is a battle; a pound a victorious campaign. At best, she has a twenty to forty chance for survival."
We talked for about an hour and John got up to leave. In spite of everything his honesty and air of natural confidence were reassuring.
"I've ordered three nurses for round-the-clock duty with Karen," he said at the door. "I'll be back a little later."
Long after, and quite by accident, I found out about the many hours, especially at night, that Dr. John sat with Karen.
After he left I turned to Jimmy. "Thank God for John. If anyone can pull her through he can. He'll work hard, we'll pray hard, and one fine day she'll leave here fat and round."
"Of course," said Jimmy, and meant it.
My hospital stay was difficult. Each time I heard wheels roll in the corridor I knew (rightly or wrongly) it was a fresh tank of oxygen for Karen. Any conference in the hall, I thought must be an emergency discussion. Any footsteps hurrying down the corridor tapped out "danger."
The rising bell on the maternity floor comes earlier than on the other hospital floors, about 5:15 a.m. to be exact. On maternity, however, it is not the dismal knell it is elsewhere, but a joyous ring of a new day and a new life.
The babies are brought to the mothers between 5:00 and 6:00. I would lie there in the dim morning and listen to the vibrating, noisy trains of youngsters as they were wheeled down the corridor and halted for transfer from cart to mother. When they went unhesitatingly by my door, I would try to think only of how lucky we were that she was holding her own and even gaining a little. But there are six feedings in twenty-four hours and I found it rough going.
I was impatient to "meet" my daughter, even if the meeting would be through a window. On the 22nd of August, when she was four days old, the meeting took place.
I had made up very carefully, brushed my hair and tied it back with a Kelly green ribbon to match my robe. Gingerly I slid off the bed and, leaning heavily on the nurse, eased myself into a wheel chair. This was several years before science had advanced to the present procedure of sending mama on a hike the day after the baby is born.
The nurse was sweet and just a little anxious. She propelled me out of the room and down the hall to the nursery. The door was in the middle, and the walls on either side, facing the corridor, were plate glass. It was a cheerful room of many windows, and the morning sun shone brightly on the soft yellow walls. Sinks and tables with the accouterments for the first handling were at the extreme right. The babies' baskets were in neat four-tiered rows, each row four baskets long. To the left and just under the window where I stood, were three oblong metal and glass boxes with a confusing profusion of dials and tubes. These were the incubators.
My daughter and I were introduced by the baby's nurse, Jackie Bayha, who smiled at me with her eyes (the lower part of her face was totally concealed by a mask). She pointed to my daughter's couch in the nearest incubator. I rose carefully from the wheel chair, and joyful and fearful bent for my first look at our wee bairn.
She was covered from chin to toe with cotton. The first glance was a rude shock; she was so tiny. How could anything so minute be alive, I wondered as I watched the still little form. Why, she's smaller than any of Marie's dolls. I gripped the ledge under the window and waited to catch the tiniest movement of breathing. After a little I was sure I saw one; then I considered her from an esthetic point of view. I believe she was the most exquisite morsel of humanity ever fashioned. I feasted my eyes. How I yearned to touch her, to hold her.
I must have stood a long time, when I suddenly began to feel faint. Reluctantly I slid my eyes away from her and sank back into the chair. The nurse wheeled me back to my room, helped me into bed, left me for a moment, and returned with something that tasted awful but revived me somewhat. After she left I lay with my eyes closed, trying to recall every detail of the little head.
Three days later I was discharged. Before I left I spent a long time at the window, memorizing the baby features to take home with me. I remarked to one of the nurses that Karen's head was no bigger than the orange I'd had for breakfast.
"It's not," she replied, "and she weighs less than the broiler I bought for dinner last night. But you wait and see. Before long she'll be the size of a turkey gobbler."
A hospital, for most people, is a robber's den, holding them hostage and appropriating something before releasing them — an appendix, tonsils, or pounds of flesh after an illness. But the hospital, like Robin Hood, seeks to redeem itself through what it gives to others. For example, a woman forgets everything when she is wheeled to the door and the nurse walks beside her holding a small, soft bundle.
Off the record, any similarity to Robin Hood ends here, for he gave gladly, whereas nurses seem most reluctant to part with their bundle — which seems to indicate unmistakably lack of faith in a new mother's ability to do anything but lie abed and modestly receive congratulations.
Grandma, who bore her children in the large front bedroom at home, surrounded by steaming pans of hot water (I have never been able to find out what it's for, nor have I ever seen any in a hospital) did miss something. She missed the thrill of bringing the baby home.
Jimmy and I had relished this homecoming with our first baby Marie. He had carried her into the house not as easily as he carries a football, but a little stiffly and not a little proudly.
That first time I came home, two and one-half years before, I felt as though I'd been away from it for à long time. The house looked strange and at the same time warmly familiar. He had pushed the thermostat up to eighty degrees so we should not "chill." The elaborate bassinet was in place beside our bed. Mountains of diapers were on the bureau. In the bathroom, tins and bottles of talc and baby oil had replaced Jimmy's shaving things and my boxes and bottles and jars. The baby scales were on the table. The folding bath usurped the tub. There was confusion in the house, there was a baby in the house, and it was wonderful.
This time Marie was waiting for us. As we came around the bend we could see her and Mother on the lawn. Neither had ever looked so good to me. Mother is a woman of rare beauty. She is small, delicately proportioned, her exquisite features perfectly molded. She has brimming dark eyes, and a mouth of infinite sweetness. Her hair has been snow-white since she was twenty-four and that day it gleamed with the blue tinge of fresh snow. I could see that she had Marie scrubbed, starched and shining. We could also see that Mother had been having a time of it keeping her that way till we arrived, because Marie was young, healthy and excited. As we drew up before the house I remember thinking that our street smelled better than any other, for the hot sun drew out the full fragrance of pine, fresh-cut grass, and salt marshes.
As the car stopped, Marie broke loose from her Nana's restraining grasp and raced to meet us. Abruptly she halted in mid-night and stared at me. Not at my face but at my hanging hands and arms. We had explained to her months ago that when the baby came it would be her baby to care for and that we would do only those things beyond her size and strength. I knew that Jimmy, in an attempt to ward off disappointment, had carefully explained that I couldn't bring the baby home with me.
As I watched her stare at my bundleless arms I could feel my stock go down for that cardinal sin — a broken promise.
"Where's my baby?" she demanded.
"Daddy explained to you," Jimmy said as he moved ahead of me, "that the baby was not strong enough to come home right away."
Jimmy put his hand on her shoulder but she pulled away, a pathetic, tiny figure of disappointment and disillusionment.
I started to speak but she demanded:
"Why can't she get strong here?"
I explained that Karen needed doctors and nurses to help her get strong — that we couldn't do it at home.
"I could make her strong. I take care of Susan and she's strong." Susan was her favorite "magic-skin," astigmatic-eyed doll.
Just then Mother came out of the house, whence she had retreated in the face of Marie's hurt.
"I think Mummy should sit down," she said. "Let's help her into the house." Marie turned and walked with us but without any gesture of helpfulness. Mother and I went into the nursery, and Jimmy and little Marie stayed in the living room. Beside Marie's bed was the refurbished bassinet. As I looked at the bed and the bassinet, side by side, I had a frightening feeling of failure.
From the living room came the soothing flow of Jimmy's voice, kind, compassionate and patient.
Susan, the doll, was lying on Marie's bed in that position of abandon peculiar to well-used dolls. I picked her up and brought her with me to the living room.
"Honey, I think Susan's lonesome and a little hungry. Isn't it time for you to feed her?"
"You feed her, Mummy," said Marie dispiritedly.
I went over to the couch and inched in between Jimmy and Marie. Jimmy put his arm around me and Marie squeezed against my side. We three were together in a new closeness. A closeness brought about by hurt and longing, for a member of our family that none of us had even touched.CHAPTER 2
The previous daily routine was revised.
I would hurry with the housework so that I could be at the hospital for the afternoon visiting hours from two to three o'clock. Marie was too young to take along so I used to farm her out, or a kindly neighbor would come and stay with her until my return. We established a staff of rotating "sitters" for the evening so Jimmy and I could go together and "visit" Karen from seven to eight o'clock. I'd have Marie bathed and pajamaed when he came home. They'd visit a little; then we'd have family prayers which always ended with Marie's "Please, God, make my sister strong quick, and send her home." It was such a hard prayer that she would squeeze her crossed feet, squeeze her folded hands and squeeze her eyes tight shut.
Excerpted from Karen by Marie Killilea. Copyright © 1983 Marie Killilea. Excerpted by permission of OPEN ROAD INTEGRATED MEDIA.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
- Cover Page
- After Thirty Years
- Chapter 1
- Chapter 2
- Chapter 3
- Chapter 4
- Chapter 5
- Chapter 6
- Chapter 7
- Chapter 8
- Chapter 9
- Chapter 10
- Chapter 11
- Chapter 12
- Chapter 13
- Chapter 14
- Chapter 15
- Chapter 16
- Chapter 17
- Chapter 18
- Chapter 19
- Chapter 20
- Chapter 21
- Chapter 22
- Chapter 23
- Chapter 24
- Chapter 25
- Chapter 26
- Chapter 27
- Chapter 28
- Copyright Page