. . . let the children come unto me.

Like most of us, there is a secret story in my life that will not be fully told until we are gathered around the heavenly cabin with the Carpenter from Nazareth once this life has been folded up like an old blanket and put away for good. Although I have learned much from books both old and new, about God, life, prayer, and purpose in life, I have never learned from a book as much as I have learned from our son Benjamin. Benjamin was born with a medley of disabilities resulting from a chromosomal abnormality that we discovered some years later, after our search for a “cure” began. There is much to say, to write, to ponder about how Benjamin and his care have generally shaped my life, and the life of my family, in ways that we could never have imagined on the day of his birth. I find this is true of any family that is shepherding one of God’s “special” children through this world; it is an absolute exercise in faith . . . and there are no Platonic rejoinders or platitudes that will ever fully contain the ocean of powerlessness in which these parents and shepherds swim every day.

Over the past few months I have had to be in conversation with families and caregivers of those with special needs. And I find that I have been sharing the following story from Frederick Buechner quite a bit; it may be one of the reasons that I generally find that he speaks to the corners of my own heart. Of course it is not an “answer”; it is simply the perspective and experience of one caring human being for another. However, I do find that bringing language and light to our suffering and our hopes, our joys, can help make the passage of this present time a bit more bearable. We remember that no one who calls upon Christ is ever walking alone, and that with one another’s help, we can each be reminded that every child of God is playing an irreplaceable part in someone else’s life and journey.

Johnny – Frederick Buechner, “Yellow Leaves”

My wife’s brother, Johnny, spent years of his life doing wooden puzzles with pieces he could take out and put back again. Sometimes he got the elephant- shaped piece back into its elephant-shaped place on the first try or turned it this way and that way with his long delicate fingers until it fitted. Other times he held it suspended in the air so long that his arm finally sank down to the table. Either way, his face always wore the same look of disdain. It was like the face of a man cleaning up a dog mess—his lips pursed, his eyebrows raised, to distance himself as far as he could.

The men who took care of him kept the TV going all day long, but he seemed to pay no attention to it. He seemed to pay no attention either to the wide stretch of inland waterway he could see through the picture window he faced from his wheelchair, its banks dotted with one-story houses like his, each with a screened- in pool and a dock and a palm tree or two. There was always a lot going on to watch—speedboaters, water-skiers, people fishing, swimming, sunbathing but he appeared either not to notice it or to be bored by it.

If you hadn’t known better you might have taken him for a Supreme Court justice. He had a grave, unlined face, and thick dark hair and dark eyebrows. His mouth was small and shapely like the mouth of a silent movie star.

In his earlier days he had talked a little. If you pointed to things in a picture book—a fire engine, an ice cream cone, a pussy cat—he could name them in a blurred sort of way as if he had no roof to his mouth, but in time he either lost the ability or just didn’t feel like it. Ralph, who had taken care of him for thirty years or more—a short, fat man with warts on his eyelids and a knack for picking winners at Saratoga—could sometimes get him to repeat things after him like “Thank you” or “Mother,” but there were only two things I can remember ever having heard him say on his own.

One of them was “Nowanna.”

The van was ready to take him for a drive.  Nowanna.

They were going to lower him into the swimming pool in his canvas sling. Nowanna.

If he wanted dessert, he had to finish his spaghetti first. It was time to go to the bathroom. His sister had come with birthday presents. Nowanna, nowanna, nowanna.

Sometimes he groaned it. Sometimes he bellowed it like a cow in labor. Sometimes it rose at the end to a desperate, ear-splitting crescendo. You wanted to strangle him. Sometimes it was how he greeted his mother when he saw her coming through the door.

The other thing was Please.

He would suddenly reach out his hand to you and say it . . . Please, Please . . . as if his life depended on it. As if his life depended on you. His silky, cool hand would go limp in yours. Then, slow as a lemur, he would withdraw it. He would turn his head away with a look of vague embarrassment. “Please,” he would say. As if his heart would break if you didn’t.

His parents moved heaven and earth, of course, at least his mother did. His father felt so helpless and uncomfortable in his presence, he left it mainly to her.

Doctor after doctor was consulted. They experimented with medications that would control his epileptic seizures without turning him into a zombie and other medications for other things that were wrong with him. “Doubly disabled” was the term they used for him: physically because he couldn’t do lots of things other people could and psychologically because it depressed the hell out of him.  So they tried other medications for the depression, some that worked better than others, some that made matters only worse. They also tried placing him temporarily in various sanatoriums and mental hospitals, always making sure that he had a suite of rooms to himself with nurses around the clock, but once he was settled in one of them, the visits of doctors and therapists tended to become fewer and fewer.

Nobody seemed interested in new ways to get him to walk and talk. If he was going to find a way to join the human race, he was going to have to find it on his own.

The next step was to establish him in a house of his own with Ralph and three or four others who took turns looking after him and a woman to cook and clean.

The hope was that it would be less stressful than having him at home and might also encourage him toward some sort of independence. His mother saw to it that he was surrounded by things she thought appropriate to a young man his age— leather armchairs, sporting prints, athletic equipment, framed photographs of his family and of himself while he was still able to kick a ball around and rake leaves—and gradually she and the others ascribed to him a personality to go with it. They joked about him as a kind of amiable eccentric—cantankerous, demanding, unpredictable but as good-hearted inwardly as he was unresponsive outwardly. Above all he was treated as the master of his own house. Ralph took to calling him Tiger, and everybody was instructed to say “Mr. Merck’s residence”

when they answered his phone.

None of it worked. Not only was he unable so much as to dream of kicking a ball or raking leaves again, but it reached the point where he could walk only with somebody to support him under each arm moaning Nowanna as he went, and it became such a hassle to get him to use a knife and fork at meals that they took to feeding him themselves so regularly that for a while he lost the ability to do it on his own.

Somewhere along the line his mother found her way to a powerhouse of Christian Science practitioner called Sunny. She specialized in women of means whom she referred to as her “convertibles” and had Mary Baker Eddy shelved in her office next to a business encyclopedia and a guide to investing. My clearest picture of her is the way she appeared at our wedding with her hair in a pompadour, a hat with a plume in it, and a veil drawn tight over her triangular face and sharp little eyes. She looked like the bad fairy at the Christening.

By the sheer force of her personality, she helped my mother-in-law survive.

Since God was perfect, she explained, everything God made must obviously be perfect too including Johnny. He was God’s perfect child and to see him as any- thing else was only an Error of Mortal Mind. She must keep on telling him that he was God’s perfect child and, more important still, she must keep on telling herself. She must know it. And Sunny herself would be working on him as well, she said. She never said praying for him—I suppose because that implied there was something real to pray about—but working on him in the sense of knowing until the sweat trickled down from under her veil that he was as perfect an example of God’s creation as the lily in the field.

“If I didn’t know that someday Johnny is going to be well,” his mother said to me once, “I wouldn’t want to go on living.” But with another part of herself that strong, good woman knew as clearly as anybody else that there wasn’t a chance in the world of his ever being anything but the one who sat there year after year with his feet in their white cotton socks flopping out over the edge of his wheel- chair as useless as flippers. Nevertheless, for the rest of her life she studied Science and Health every morning before they brought in her breakfast tray, and when to her horror Sunny committed the final Error by dying like everybody else, she found various other practitioners to take her place. But all of it was so clearly in vain that added to her grief was a terrible burden of guilt. If only she could do it right. If only she could see him as the perfect child, she tried so hard to know he was.

As for me, I caught two different glimpses. One was in a dream that for years I kept on dreaming. Johnny and I would be together somewhere, just the two of us. The storm had somehow passed, the battle had somehow been won, and we were looking back on it. I remember the enormous relief we both felt that everything had finally worked out. Like old war comrades talking about the war, we talked about how sad and terrible it had been. We talked about how wonderful it was now. I told him how wonderful it was to be able to talk to him, to hear him talking like everybody else. I felt enormously close to him, enormously happy that after all the lost years he was at last my friend and true brother.

The other glimpse was his smile. It was as unpredictable as it was rare, but one thing that sometimes prompted it was the only joke I ever knew him to play.

My wife’s name is Judy and her sister’s is Bambi, but sometimes when Judy and I went to see him together, he would stretch his hand out to her and call her Bambi, knowing full well that he was doing it wrong. It was a smile that trans- formed his whole face but so slowly and subtly that like the rising of the sun you were hardly aware what was happening until the whole room was flooded with light. It was a smile of such radiance that it somehow canceled out everything that was not radiant—everything about him, everything about us, everything about life. It was the smile of Columbus sighting the New World. It was the lost colony of Atlantis rising out of the waves.

There was no way of knowing what he wanted when he reached out as far as his arm would stretch, but in case what he wanted was me, I always took his hand in mine. Then, invariably, he would turn his head and look the other way as if I wasn’t even there, as if the hand I was holding didn’t even belong to him. As if he was ashamed. As if he was embarrassed. Maybe he just had forgotten what a few moments before he seemed to want so desperately. It was impossible to know.

Please, he would say, holding his hand out as far as it would go. As if he was afraid, he was going to drown.

His mother died on St. Valentine’s Day in her eighties, and Johnny in his sixties seemed utterly oblivious of it. Even when, as always, he was taken to her house for Sunday lunch and she wasn’t there, he gave no sign of noticing. We wondered if he knew. Yes, Ralph said, he knew. And when he told him, Ralph said, tears had run down his big, solemn face.

But I wonder. I cannot picture it because I never saw him in tears. I cannot imagine anything hitting so close to whoever he was in the deepest part of him- self. Maybe Ralph was just trying to keep his fictional personality alive.

What I picture instead is those little shapely, pursed lips and raised eyebrows as he sat there silent and unmoving while Ralph did his best to explain what had happened.

Soon after he died, I wrote a poem about him which I read in the Jupiter Island cemetery behind the chapel where three of our small towheaded grandchildren—Dylan, Tristan, and Caroline—helped fit the box with his ashes in it down into the newly dug hole like a piece of one of the puzzles he had spent so many years struggling with.

He held the giraffe

so long in his delicate

hand he forgot

the giraffe-shaped hole

forgot where he was

who he was if he knew

like a president signing

a bill into law

he placed it at last

upside down first

then straight where it went

the place it belonged

tightening his lips

in disdain like the only

man in a room

full of children

his window gave out

on the waterway windsurfing

boys girls all gold

in bikinis a pelican

perched on the dock

if anyone opened

the door his lament

rose at the end

to the shrill of Oedipus

blinded a cow

giving birth

they lowered him into

the pool in a harness

hoisted him into

a van in his chair

drove him anywhere miles

a nurse said he grasped

almost all that he heard

said once in the dark

he woke with his father’s

name on his lips

some line from a song

sometimes he reached out his hand

to whoever was there

to strangers to touch them

please he said please

sometimes he turned

his slow head with a smile

that could break your heart

break the pane in the window

let in the water

the sky the pelican

robed like a prince

like a shining prince

like a shining.