The Life of
Charles Benjamin Card
28 July 1983 to 16 August 2000
BY HIS FATHER
When Charlie Ben was eight years old, the customary age for baptism in the Mormon Church, he had shown himself capable of making moral
choices and therefore we and Bishop Keith Hiatt decided he could be baptized if he chose. The sheer mechanics of it would not be easy -- unlike most
children, he could not walk down into the font or keep from inhaling water. So Kristine's brother, Scott Allen, joined me in the water. The two of us
together could support him and keep him safe during the brief immersion.
As with all such baptismal services, it was announced in a regular church meeting. We expected a few of our close friends and Charlie's
teachers in Primary would attend. Instead, to our surprise, the Primary room was crowded, and not just with people who were close friends of his
parents. Charlie himself, though he was unable to play with other children, unable to speak, had made many more friends than we expected. And
after the service, most of these people came to us to tell us of some meaningful personal experience with Charlie, or just to affirm that it was because of
Charlie himself, the goodness and love they felt from him, that they felt the desire to come and welcome him as a full member of the community of
Saints in which he had grown up.
We realized then what we had missed in our close focus on Charlie's needs, on his role within our family: He had a mission of his own in life.
What people felt for Charlie was not merely the pity that people naturally feel for a child afflicted with a crippling physical condition. They had felt
drawn to him, had reached out and touched him, spoken to him, seen the delight he took in their company. They had watched the patient way he
bore his afflictions, his tender way with his brother and sister, with his parents, and with his friend and nanny, Erin Absher. And, having made
personal contact with him, they felt their lives changed a little, blessed by having Charlie among their friends. They came to his baptism to show him
what he meant to them.
One elderly gentleman, not a member of the Church but married to a longtime member, had wanted to join the Church by baptism but felt
that his physical condition was too frail to permit it. Sister Long later told us that when he attended Charlie's baptism, Brother Long decided then and
there: If Charlie Ben could be baptized, so could he. Brother Long passed away only a few months after his baptism, but because of Charlie's example,
the Longs spent their last months together doubly joined as fellow Saints.
Charlie reached far beyond Greensboro. Wherever he went, people noticed him, were drawn to him. Strangers walked up to him in airports,
in malls, in stores; they would speak to him, and continue speaking to him even when we told them he was nonverbal and could not answer in words.
"My daughter works with handicapped people," said a man in an airport, Erin Absher remembers, "but I've never seen such sweetness."
Charlie has visited our family in Utah, Phillip Absher's family in the mountains around Wilkesboro, North Carolina, and Erin Absher's family
and close friends in southern California. Eight years ago, Phillip took Charlie to the sixth-grade class he taught in Anza. Charlie made such an
impression that recently, two of the boys who were there that day, now tough senior football players on the team Phillip coaches, remembered
Charlie and asked about him.
People who have been with him only a few times, for only a brief time, have come away feeling indelibly touched by him. My brother Bill,
writing to me in the last few days, remembered times he had spent with Charlie: "He must have been a young teen, judging from his size. He sat on
my lap at the folks' house and patted my arm as I held him. As I whispered little nothings in his ear and cuddled him, he'd smile and pat my arm, smile
and pat, smile and pat. He was dear. I was soul-touched.... When you returned to the room, Charlie had fallen asleep and I was just cuddling him. It
was a transcending time for me. I've cherished those memories ever since."
Others have told of similar experiences. There are not pages enough here to tell them all.
What we realized the day of Charlie's baptism, and have been reminded of again and again ever since, is that Charlie Ben was not a secret kept
within the family that loves him, but rather a light on a candlestick, shining for all who have eyes to see.
Even before he was in an unusual wheelchair, even before the misfiring of nerves caused his muscles to twist his body and face, Charlie Ben
caught your eye. He was a beautiful child with a radiant smile. When he began to ride in supportive wheelchairs that looked like lunar landing
modules, and later, when his twisting body made strangers notice his strangeness first, those were merely tricks to catch the eye.
It was Charlie himself who won our hearts, the bright awareness of his eyes, the cheerfulness with which he greeted the world. Goodness sees
goodness as beauty. The people drawn to him recognized his open offer of love and returned it generously.
Charlie was born trembling. It was obvious something was wrong, but in the operating room the doctors would not tell me what this meant,
and Kristine, still in the midst of the pain of birth, was filled with fear for this child.
Later we realized that the doctors did not answer our questions because they did not know the answer. As Charlie languished in intensive care,
unresponsive, his limbs drawn up in a froglike pose, the doctors puzzled over what to make of his condition. At first, it seemed likely that he would
not live to be taken home. But the prayers and yearnings of his parents and brother and sister were answered. The conditions that threatened his life
eased, until only the underlying cerebral palsy remained. We took him home.
Nothing came easily to him. Normal children learn, more quickly than experts generally admit, to smile, to respond; but Charlie could not
respond. His face showed no emotion. His eyes could not hold still to focus. And, deprived of the ability to learn from the responses of his own
body, he lost interest in the world around him. He slept. Twelve, eighteen, twenty-four hours at a time. In those first months we again feared that
we might lose him, as he withdrew from a world over which he seemed to have no control.
Our task was to give him a reason to stay with us. We stretched and rubbed his limbs, his fingers. We sang to him, talked to him, ignoring the
fact that he could not respond to us, assuming instead that the child inside this body was feeling things he could not show.
And he responded. He awoke. He learned to eat. He recognized our voices. And, many months later than other children, he learned to
smile. Merely to hold his head up and turn his face to the left or right was a struggle that took years, and the ropy muscles of his neck showed how
much effort it cost him. Yet he took pleasure in physical movement -- he loved to kick his legs, and when, after an operation, his legs were confined
in a cast, he even learned to clap his hands to call us to him.
Even when he was little, he laughed when we whistled or sang a tune he liked, or when his father tossed him in the air and caught him. Ah,
that moment of weightlessness, that heady rush of movement! He showed us his happiness, and we clung to him and kept him with us.
Gradually, over the years, we came to learn more about his physical condition. There were experts who were sure that because he could not
speak and did not respond as they expected, he must be mentally retarded. If he had been, we would have been the first to recognize it -- I had grown
up with a retarded aunt, and what we wanted for Charlie was the most appropriate help we could provide. But we knew that in Charlie's case, the
experts were wrong. Because his control over his body was so severely limited, you had to know him to see his responses; you had to be patient and
wait for him to be able to give the signs he used to communicate. We remember the one expert who told Kristine, in all seriousness, that she knew
Charlie did not understand anything because, when she said, "Do you want me to spank you?" he gave no aversive response. Kristine could hardly
believe what she was hearing. "When do you think he would ever have heard the word 'spank' in his life? What do you think he might have done
that would deserve punishment? What kind of parents do you think we are, that we would ever raise a hand against this child?"
In the end, however, Charlie's bright spirit was recognized by good and sensitive teachers at the Gateway Education Center, and he had many
good experiences there. As he grew too tall for his father to toss him in the air, he got much the same pleasure from swimming in the pool at
Gateway. In water he was weightless again.
We almost lost him when he was seven. Out for an evening with friends, we picked up the phone to hear Geoffrey telling us that his Uncle
Scott, who was tending, was concerned about how Charlie looked and asked him to call. We took all such observations seriously. Kristine rushed
home to find that Charlie, who had seemed only to have a little case of the sniffles when we left, was in the midst of a crisis -- he could hardly breathe.
His lips were blue by the time she got him to the hospital. Another hour, and the pneumonia would have been irreversible.
With so little muscle and no fat at all on his body, he had little resistance to disease when he was little -- germs and viruses could sweep
through him so quickly that we had to watch over him, searching for every sign of ill health. Fortunately, he grew more robust in his teenage years,
and doctors commented that they rarely saw people his age, with his disabilities, who were so healthy.
In his teens, the twisting of his body turned to scoliosis. The bending of his spine did not yield to the body braces that enclosed him for many
hours each day, and the only surgery that was suggested was shown to offer only cosmetic benefits to children like Charlie, in exchange for much pain
and many complications.
Though physical progress was excruciatingly slow and took enormous effort and concentration, he kept learning more control over his body
throughout his life. Eventually he could put his hands where he wanted, resist reflexive movements, turn to look at what he wanted to see, keep a
steady gaze. These were all hard-won victories, and it was frustrating that even as he gained control, his body was steadily losing flexibility, as his
back, wrists, and right arm could not straighten. But if he wanted to touch you, to hold your hand, he could; how happy it made us when he did.
The last few years of his life, sitting up became very painful to him, as he could only sit balanced on one hip, the other hip rising to press
against his ribs. It became harder for him to breathe as his lungs were compressed. Some mornings when he was lifted from his bed, he coughed and
wheezed, struggling to clear his lungs.
He did not complain, except when the pain became unbearable. We learned early in his life that when Charlie cried, it meant he was in deep
physical distress; minor pains he would bear with patience. But as his muscles cramped and bound, we heard those cries more often. We rubbed his
muscles, stretched him, gave him pain medication.
Because of the pain and effort that sitting required, he grew weary more quickly. The three hours of church meetings on Sunday exhausted
him. That's why, for the last few years, he has spent sacrament meetings lying on a pew; by resting, he was usually able to endure the last two hours
sitting up in his chair.
We would not have put him through those hours if he had not been so eager, so happy to be at church among his friends. For these children
who had grown up with him were not put off by his appearance. To them, the changes in his appearance were gradual, and his was simply one of the
ways a child might be. Even in the middle school years, when children are so easily embarrassed, his friends remained unashamed of Charlie. They
talked to him, welcomed him gladly. The young men who, as pallbearers, carry Charlie's coffin, are the same young men who included him in their
priesthood quorum, who pushed his wheelchair through the halls, who watched over him. He did not speak, and so conversation was not possible.
But inclusion was. It was for those friends, more than anything else, that we did not allow my career to lead us away from Greensboro. Charlie made
friends wherever he went, but here among these young men and women of the Summit Ward, he always knew that he was one of them. It was a gift
that many stronger, freer children have to do without.
Nor was it just the children his age. In our first years in Greensboro, Kristine worked with the Young Women's organization. Girls who were
teenagers then, who had known Charlie when he was little, are now mothers with families of their own. Kristine has watched them take their own
babies and set them on Charlie's lap, knowing his tender ways with little children, and Charlie has rejoiced in being friends with these young families,
There are adults who are always genuinely glad to see him, to touch and speak to him. And some have felt a deeper affinity. Jill Locke, in
particular, a librarian and musician, recognized in Charlie a kindred spirit. She saw how he brightened up when certain music was played; she took
careful note of songs he loved. She began to bring us music for him to hear, and soon she began to come to our house every Wednesday to read to
Charlie from children's books and others she thought that he might love. He looked forward to her visits -- Jill was a friend he made himself, and her
gifts were gifts he valued.
As Jill noticed, music was vital to Charlie. He had pronounced tastes that went through phases. When he was in his country music phase,
Kristine was driving him on a long trip. He seemed to have dozed off, so she turned the radio station to music she liked better -- but almost at once he
began to kick the radio until she changed back to country music. He had even less patience with books on tape. Though he loved to be read to at
home, car trips were for music.
Later, his preference changed to classical music. Once he was listening to a virtuoso violinist perform on the Disney Channel when the
performer switched from classical to an electric pop sound. He pursed his lips and shook his head -- unbearable! Charlie went to bed each night with
a cd jukebox that cycled through many kinds of music; if it stopped, he called to us until we turned it on. And as Emily began to practice singing and
playing the piano, he loved to hear her voice reverberate through the house -- though as Emily can attest, he had no patience at all with people singing
along with records. Let Kiri Te Kanawa sing her solo alone, thanks. You can sing later. He had a bit of attitude about that.
It was not just at church that Charlie found good friends. We remember well when he entered Greensboro's excellent program for children
with cerebral palsy. The first time he found himself in a room with other children who were also in wheelchairs, he burst out in joyful laughter that
he could scarcely contain. There were others like him! He was not the only one!
For Charlie's cheerfulness is not because of a lack of understanding. We who have cared for him and know him well have seen the wistful
looks, the inward-turning sorrow when he faced the things he could not do. When he was little, he gradually realized that he was not going to be able
to run, to shout, to use his hands the way Geoffrey and Emily did. He had all the normal desires and urges of any child, and felt it keenly when he
could not act on them.
Once a teacher filmed some classroom activities and sent the videotape home with him. We watched it together on the TV in the family room
-- his bedroom, too, for we placed him at the center of our home, so as much of the family's life as possible was within his sight and hearing. He
watched eagerly enough, until he saw his own image, face and body twisted by palsy. His expression grew sad and he turned away. That was not how
he saw himself; he did not want to be reminded. We, who were so used to him, who still saw the beauty that had always been in his face, had
forgotten that he did not see himself in mirrors every day, that his idea of beauty and normality came from the images of television, the faces of his
His truest mirror was always the eyes of those who loved him.
Puberty reached him as it reached any other boy. He saw the beautiful girls around him; there were those who were special to him. If he
grieved that they were perpetually out of reach, he usually kept that sorrow to himself, and if he could not fake happiness, he could feign unconcern.
Of course the friends that he communicated with best were those at school. At Gateway there were children whose lives were as limited as
Charlie's own; they did not expect verbal conversation in order for him to be interesting. Aaron Dudley was his closest friend for a long while in their
pre-teen years. Aaron's parents brought him over to play, and the two of them lay side by side for happy hours, teasing and laughing with each other.
Another friend was Emily Espinola, a girl at school who, among her many disabilities, was nearly blind. Her body was undersized, but the teachers
knew that they could lay her on the waterbed beside Charlie Ben, for the moment she was there, he would stop his exuberant kicking and instead
reach out and touch her gently, careful never to hurt her. They, too, laughed and played together as equals.
Charlie always watched out for others and never knowingly caused harm. One of our favorite family stories is from a trip to France. Kristine
had stepped inside the house to answer a momentary question, leaving Charlie in his wheelchair in the garden, beside his little sister Zina, then a
toddler. No sooner had Kristine left him than he began to call out urgently. Charlie did not make such cries lightly, and Kristine rushed back out to
find Charlie shouting and looking toward Zina -- who, in the manner of two-year-olds, had made a beeline for a set of stairs that Charlie knew were
forbidden to her without a grownup holding her hand. As soon as she was safe, he laughed in relief and pride at having been able to call for help.
Charlie knew what was expected of a good big brother because his own older brother and sister had been so good to him. Geoffrey was five,
about to start school, and Emily was nearly three when Charlie Ben was born. He grew up in the shelter of their protective care. They learned what
he needed and watched over him, alerting their parents when they saw him in need, or helping him themselves, when it was within their power.
There were times when, in the night, Geoffrey would waken with a feeling of concern for his brother, and would go downstairs and sleep
beside Charlie's bed. Later, when Kristine was pregnant with Zina, Geoffrey -- a sixteen-year-old then -- took over the burden of lifting Charlie, again
and again, morning and evening, forming anew the close bond that comes from intimate service.
Emily, too, even when she was very small, yearned to be part of Charlie's life, and so, knowing that we did not think her old enough to lift or
hold him, she secretly learned to lift him to a sitting position on the floor, and even to carry him. As soon as we discovered what she was doing, we
recognized that she was right. She never dropped him, was always perfectly careful of him, and gave him many happy childhood hours of attention
and play, of singing and stories. Until the end of Charlie's life, Emily was among that small group who could feed him and change him, dress him and
carry him to and from his chair.
It was natural, then, for Charlie Ben to feel that same sense of responsibility and protectiveness toward little Zina. As she grew, as she learned
to walk and talk -- things that remained out of Charlie's reach -- he did not let himself envy her. Instead, he gave her what he could. For if ever a
child needed a willing audience, a patient participant in her play, it was Zina. How many times have we found her covering his bed with stuffed
animals or dress-up clothes, and Charlie inside, shaking with silent laughter until we uncovered his hiding place and he laughed aloud? She has watched
many a movie sitting beside him, and out of love for her he has patiently watched -- over and over -- movies that were far too young for him, that he
would never consent to watch alone, but watched for Zina's sake, because she needed his company.
And in the last year or so, after Zina learned to read, many a morning she has arisen early and crept downstairs, books in hand, to read to
Charlie in the hours before breakfast. He listened to her with delight and pride in her. Who can take the place that Charlie has had in Zina's life? He
was always available to her, always willing, always interested, always glad to see her. When she piped on a whistle or plinked on a toy piano, he
laughed and enjoyed her long after her parents fled the cacophony. When she danced, he watched. When she talked, he listened. Surely he gave back,
to Zina, some of the gifts that Emily and Geoffrey gave to him.
Erin and Phillip
When Charlie was about five, Kristine was working in the stake Young Women's program as counselor to Erin Absher. Already Kristine's life
was shaped around Charlie's daily needs. The burden fell most heavily on her, to my consternation, for I had prided myself on having matched her
diaper for diaper, waking for waking, bath for bath when the other children were little. But we quickly learned that Charlie's needs were so much
greater that I could not bear an equal share and still keep up the work that paid the rent. So it was Kristine who, day by day, followed Charlie's erratic
schedule, dealt with his fragile health, gave him the stimulation that kept his life interesting, with me and Geoff and Em helping as we could. We could
leave Charlie with a babysitter for a few hours, but only a few babysitters could be trusted to be alert to him, and it was rare to be able to leave him
Then one day Erin came to Kristine and told her that she felt a strong desire to learn to know Charlie. Because Erin and her new husband
Phillip did not yet have children of their own, Erin felt she had the time to learn how to help with Charlie's needs and to know him with the intimacy
of one who can give another all he needs to live.
Soon enough, we learned a good reason for Erin to have learned to care for Charlie Ben. A tubal pregnancy nearly cost Kristine her life, and
her recovery was long and slow. She could not lift Charlie, and while I could and did take care of him, my work stopped cold while I did so. To write
a book required a level of concentration that I could not maintain while stopping every few hours to feed and bathe and change Charlie, and if I also
read to him and played with him, massaged him and stretched him, there was nothing left.
So Erin came to us while Phillip finished his degree at Appalachian State. She lived with us during the week, returning to Phillip on weekends.
Later, she and Phillip lived in an apartment in our house for a year while he finished his degree; and when Erin and Phillip moved to California, she
continued to return to take care of Charlie and, often, the other kids, or took Charlie to California to visit with her and Phillip, giving Kristine the
chance to accompany me on some of my travels.
It was not easy for Kristine to accept Erin's help at first, for she foresaw, correctly, that this relationship would not be one of "daycare," but
rather as close as family. Erin would become a co-parent with Kristine, and that is a hard thing for a mother to accept. But because Erin and Kristine
are the women they are, and because their love for Charlie Ben was the overriding concern for both of them, they made what could have been a
difficult, prickly situation into one of harmony and love. Erin and Kristine had already been friends from their church work together, but soon Erin
became a sister, and Phillip a brother to us both.
They would take Charlie to their family gatherings as easily as they came along with Charlie on visits with his Card and Allen relatives. When
we went to France the summer after Geoffrey graduated from high school, Erin and Phillip came along so that Charlie would not have to stay home.
Because they were part of us, Charlie experienced a wider world -- Erin and Phillip were with us when Charlie saw plays on Broadway and lay on the
beach in Hawaii.
But, most important, this child who gave love had four adults, four parents, who gave it back to him.
Phillip found himself the victim of some of Charlie's teasing. During a time when Abshers took Charlie Ben home with them, there was an
occasion when Erin left Charlie in her sister's house, with Phillip responsible for him. When it came time to change Charlie's clothes, Phillip could
not understand why nothing was working right. Charlie kept his legs straight, then bent them so that Phillip could not keep one pantleg on while
trying to get the other over Charlie's uncooperative foot. Phillip had seen how smoothly Erin could do this job. He grew more frustrated until Erin's
brother-in-law, looking on, laughed and said, "He's really got you going, hasn't he?" That's when Phillip realized what Charlie was doing. "Well, I
guess you got me, Charlie." Whereupon Charlie grinned, having won the day. Then he became cooperative, and Phillip was able to dress him almost
as fast as Erin did.
Though it was Charlie Ben who brought Erin and Phillip into our lives, there has been no thought, no possibility, of drawing any kind of line.
To take care of Charlie Ben in Kristine's and my absence also meant providing meals and enforcing family rules with Geoff and Em and, later, with
Zina. Many times Kristine and I left Erin behind with our children, but we were always happier when we could all be together. With Erin and, when
his work as a schoolteacher allowed, Phillip traveling with us, it was possible to bring Charlie and share together in new places and experiences. It was
as a family of eight that we crossed continents and oceans with Charlie.
When Kristine became pregnant with our fifth child, as soon as we knew it would be a girl, we knew her name would be Erin. Like all our
children, we would give her two names -- one for a writer we admired, and one from a relative. Erin's middle name, Louisa, was for Louisa Mae
Alcott. The Erin was a family name -- for Erin Absher was family now. (Charlie Ben's names did double duty -- the Charles was for Charles Dickens
and for his great-great-grandfather, Charles Ora Card, who founded Cardston, Canada; and the Benjamin was for novelist-turned-prime minister,
Benjamin Disraeli, and for Ben Bova, a noted novelist who, as editor of Analog, bought my first story and launched my career.)
Erin spoke at Charlie's baptism, and at the funeral of baby Erin Louisa when she died the day she was born. Phillip dedicated Erin Louisa's
gravesite. And when Charlie died during a family vacation in Myrtle Beach, it was Erin who called the paramedics while Kristine ran down to meet
them and bring them up to our apartment; it was Phillip who knelt over Charlie's body with me to give him CPR, and Phillip whose lips blew the last
breaths that Charlie took into his lungs. These are ties that bind us now as close as any kin. On those occasions when Phillip comes to our home
along with or shortly after Erin, Zina cries out in delight, "Phillip's coming home!" She knows they live in California; she's been in their home there.
But here, among us, Zina knows, as we all know, that Erin and Phillip are home.
Charlie's life was blessed by Erin's loving care. So was Kristine's. For the two of them could confer with each other about what they observed
of Charlie's health, about the signs and signals he was using to communicate with them, about which foods he responded to and which were not good
for him. In everything they used each other as sounding boards and counselors, and while Phillip and I also contributed to this discussion, Kristine and
Erin were the world's foremost experts on the subject of their specialty: Charlie Ben. Not that they were identical in their treatment of him. Each
had her own customs with Charlie; he had his in-jokes, his favorite activities with both.
Erin rode in the car with Kristine and me as we followed the ambulance carrying Charlie to the hospital. Phillip stayed behind to assemble
Geoff and Em and Zina, and when we phoned him with the word that the doctors had never been able to rouse a heartbeat in that frail body, we had
no hesitation in trusting Phillip to tell Geoffrey and Emily. (It was Emily who told Zina of her brother's passing, as she has helped her little sister
through so many other experiences in her life.)
With Charlie's death, Erin and Phillip are as bereaved as we are. We have three other children who remain with us; they have lost their only
child so far. We prefer to look at it the other way: that Charlie Ben was such a child, was such a man, as to be a loving son to four parents, and not
just the ordinary two.
He stayed with us longer than we had any right to hope for. So many times he could have slipped away. But he was given a mission to fulfil in
our lives, and he stayed to fill it as long as he could, long after it became painful and wearying to him, long after he knew the wistfulness of seeing his
friends, his siblings pass him by. He stayed to drink the last drop of new experience, to pass each threshold that was in his reach; he stayed to give to
all he touched the love and wisdom he had earned through pain and patience.
This past week, at Myrtle Beach, was the first time our family had been truly together, without distractions or duties, since that summer in
Provence four years ago. Kristine and I, Erin and Phillip, Geoffrey home at last from mission and college, Emily poised to leave, and Charlie and Zina.
Charlie reveled in this reunion of his family, smiling often, touching us, enjoying all of us. This was heaven. This was how Charlie knew it should be,
but probably could not be again, for Geoffrey and Emily would be moving on with their lives.
Our fourth full day there, early Wednesday afternoon, a breeze came up. Worried he might take a chill, Erin wheeled Charlie out into the
warmth of the sun, on a patio overlooking the surf. Ordinarily, Charlie turns away from sudden sunlight, squints his eyes, averts his gaze. But this
time, to Erin's surprise, he lifted up his head and looked long into the dazzling sky. Phillip, standing over him, could see that Charlie was not looking
at him, and when Erin tried to tip his head down again -- "Charlie, don't look at the sun!" -- he insisted on lifting his head, looking upward. What
thoughts he had, what silent voice he heard or presence he might have seen, he did not try to tell.
Charlie was not ill that day; the sun had indeed warmed him, so he was not cold or uncomfortable; he showed no signs of pain or distress. But
minutes later, back in his room, he let out his last breath, felt his last heartbeat, and then slipped silently away, setting aside the burden of his body,
leaving behind those who knew him best and who had shaped their lives to make a place for him. Leaving us, we know, for a season -- so long to us,
but so short to him it will seem.
His was a life of quiet accomplishment. He dazzled no one with his career. There was no thrilling rhetoric from him, he had no fame. His
only gaudy talent was a flair for drawing your attention; his deep and secret gift was his ability to fill your heart.
It was a life well-lived. And those of us who miss him most sorely do not weep because of all the things he could not do in his short life, but
rather because of all the things he did that we have come to depend upon, that we will miss.
Twice, in his early childhood, when I grieved for him and yearned for the power to give to him some part of the physical gifts he was denied, I
was given a thing that is rare for me -- a clear, coherent dream, one so real that I believed it as I awoke. I saw a young boy running to me, calling out
to me, full of excitement about the wonders of the day, the things that he had done. He was my son; I was his father. I knew him, knew his voice, his
face, his walk. I awoke with words on my lips, I had to find Kristine and tell her, It's Charlie Ben, he can walk, he spoke to me. And though I wept
both times when I realized it had been a dream, I knew the truth behind it, the gift that I'd been given: For I had seen my son whole.
In a way, that is how we have seen him all along, a whole soul. He faced moral choices, and chose to be good and kind. He strove to obey his
parents and help others in every way he could. He was an example of bravery as he lived with pain and unfulfilled yearning, yet never let it stop him
from recognizing the good things that came his way, and delighting in them. I challenge anyone to show me a more meaningful life. All that matters
most in the character of a child of God, Charlie accomplished, and if his life's work did not include the things that have brought me my greatest joy --
fatherhood, marriage, to make music and language -- I know that he will not be denied these things forever. "Then shall the lame man leap as an hart,
and the tongue of the dumb shall speak."
We knew, we always knew, that we would face this day, the beginning of our years without Charlie Ben among us. I imagined this time when
I wrote my novel Lost Boys, based in part on our family. To tell the story I had to face the thought of the death of a beloved child, and I dared to
imagine what happened to his family after he was gone: "Even for the Fletchers, life settled. Not back to normal, for there was no going back for
them. Rather their life settled into a new way, a new road. There was always in Step's mind a sense of someone watching, as if he could always turn at
the moment of some triumph and say, See that? Pretty good, hey? And the one who watched would say, Neat. Neat, Dad.
"In DeAnne's mind she saw him as a light in the distance, a beacon. If I always look toward that light, she thought, if I always walk straight
toward it, then someday, even though it's very far away, I'll reach that goal."
Kristine and I have wise and great-hearted children, whose lives continue, whose company we enjoy, whose dreams will be fulfilled. They will
join us in remembering Charlie Ben, as do our sister and brother, Erin and Phillip Absher; as do our brothers and sisters and parents by blood. We
have dear friends and extended family, of whom many have known Charlie for themselves, while others have known him through us yet shared our
love for him all the same.
But it is not merely in our shared memory of his life that Charlie Ben continues, for he lives himself, in the company of his sister Erin Louisa
who went before; and he will rise again by the gift of Christ, who surely greeted our dear young man with joy when he came home, and said to him,
"Well done, my good and faithful servant."
* * *
Farewell, thou child of my right hand, and joy;
My sin was too much hope of thee, loved boy....
Rest in soft peace, and, asked, say here doth lie
Ben Jonson, his best piece of poetry....
-- Ben Jonson, 1573-1637
* * *
In a dream, I saw you running, son,
Though in life you've never stepped.
As you raced, your joy was stunning, son.
How you laughed, and how I wept.
Then you fell into my open arms, and pulled my hand
And on and on we ran!
Run on, with me, toward the dream,
Where faith and hope are all they seem.
Run on, run on, beyond the wall,
To catch the love that heals us all.
And if I fall, run on my son, run free!
But always remember me.
Gentle Charlie Ben, here just a while,
Then your tender spirit fled,
Now we grieve and we adjust a while,
While you sweetly go ahead.
As we suffer over circumstance, the most we know
Is how we love you so.
Sleep on, my child, inside the dream,
Where faith and hope are all they seem.
Sleep on, sleep on, beyond the wall,
Where perfect love can heal us all.
And in the gall of night a parent's plea:
Please, always remember me.
-- Robert Stoddard, a song written for Charlie Ben
* * *
Man's spirit will be flesh-bound when found at best,
But uncumberèd: meadow-down is not distressed
For a rainbow footing it nor he for his bones risen.
-- Gerard Manley Hopkins, "The Caged Skylark"
* * *
If God wants me with him, there is none who will stop him. I don't mind. I was never like the rest of you -- making
plans about the great things I'd do....
Why does everyone want to go away? I love being home. But I don't like being left behind. Now I am the one going
ahead! I am not afraid. I can be brave, like you. But I know I shall be homesick for you, even in heaven.
-- Robin Swicord, screenplay of "Little Women"
* * *
For Christ plays in ten thousand places,
Lovely in limbs, and lovely in eyes not his
To the Father through the features of men's faces.
-- Gerard Manley Hopkins (1844-1889)
* * *
O God who knows the utter soul,
See my son whole,
And, knowing all men's sons are thine,
Love deeply mine.
O God who trusted him to me,
See what I see:
My boy, by Christ found,
To thee bound;
My son, heart full of hope, and clean,
By thee seen.
-- Orson Scott Card