Errol Milner Clifford

Fall

2011-11-09T10:02:00.003-05:00

The mornings find frost on the south facing car windows, the days end earlier, my gut tightens as our half of the earth tilts away from the sun. The slant of the weakening light reminds me of the thinning days when we were losing Errol. At night, I lie mute, alone on my bed, falling asleep while Owen reads alone in his room. I stare up at the crumbling plaster ceiling, my mind tracing back over the contours of my life with Errol, trying to understand something that cannot be reckoned.

I pick up a picture from the bedside chest, one of the many pictures of Errol that litters our house like empty wrappers, and rub Errol’s shining face. I rub little flecks of ink off on my fingers, slowly wearing a hole into his picture. I hold the picture, looking down at Errol and think back.

Errol looks back up at me, a mute supplicant. The camera that I hold to my face hides my smile as I gaze down upon Errol’s buoyant face through the lens. I see his wet eyes, his surprise at the metal attached to my head, the smile spreading across his lips. He is my only hope, I think; so forgiving, so gracious. The light streams into the camera and then the lens snaps shut.

When Errol was alive, we were so connected that sometimes it was like my nerves were inside Errol. When we were at the doctor’s office and the needle entered Errol’s vein, I could feel the cold metallic taste on my tongue. But now my nerves feel nothing, and as I hold Errol’s picture close to my face, I wonder if his goodness, clarity, generosity was real, if I could have imagined him, if Errol could have all been a dream.

I put the picture back on the windowsill where it sits fading under the sun. I walk around the house unsure of what to do with so much time. Thinking: when you have a dead child, you never get home. Home is always somewhere else. I pace around my empty house looking, looking, looking everywhere in the thinning light.

Other loses come and go, are sloughed away by time, but Errol’s loss sits hard in my gut like the pit of a peach; indigestible.

That night, I finally sleep, but I still can’t dream about Errol. Instead I dream that Owen and I are swimming. As we swim, a few tiny sharks approach and swim harmlessly around our legs, then a huge dark figure emerges below us, and before we can scramble from the water, a huge Orca lunges up out of the water, and I scream to warn Owen to get out of the water, but he cannot hear me. Then the image shifts and Owen and I are walking home for miles and miles and we walk up a steep hill, crowned with tombstones, white like Errol’s hair, and Owen asks me where we are but I do not answer and we walk on silently through the crowded graveyard trying to get home as a steel blue sky swallows the light from the east, and the night falls upon us like a blanket and we were still far from home.

I wake and realize that it is the start of daylight savings time, and I reach to turn the clock back an hour, and then fall back into my bed and try to go back to sleep, but I just lie there in the bed staring up at the ceiling, wondering where the hour we lose this weekend will go. I remember that last hour we sat with Errol before he had stopped breathing, knowing the moment would finally come, when there would be no going back, no turning the clock back. When there would be nothing to look forward to. He was lost to us and there was nothing to find in the steel blue night.

Inevitability

2011-05-27T15:23:00.016-04:00

As my life unfolds and I look back upon it, almost all of it seems inevitable. Of course I went to college. Of course I married Cary. Of course there is a wild seven and a half year old sleeping in a bunk bed right down the hall. But as it rattles around my mind, Errol’s death feels like the opposite of inevitable. In fact, what seems inevitable is that he should still be here with us now. After all, the hopes we held for our frail boy were so real, the future we imagined so vivid - the boy turning seven, learning to talk, learning to walk, graduating from his beloved school – that my mind plays tricks on me, and at times these aspirations meld with my actual experienced history and seem completely real.

Our family is out to eat, sitting around a thick wooden table, telling stories and playing games, when Owen becomes distracted by a girl with Down syndrome, who wobbles into the restaurant, hand in hand with her younger teenage sister. Her family is slightly embarrassed of her heft and the amount of space she takes up as she totters into the restaurant and they look down to avoid the eyes they imagine will be gawking at her. They have good reason to feel this way and I worry they will see Owen staring at her and scold him for gaping, but I know what he is seeing: himself with Errol in the future he imagined. But instead, this girl is here, plodding through the room with her slow unwieldy steps, hands entwined with her sister, and Errol is a year and a half gone.

Memories of Errol reverberate though our days like aftershocks of his life, disrupting our plans to move forward.

As the family stands there, waiting for a table, I want to walk up to them I know how hard their life must be, tell them how jealous I am of them, hug each and every one of them. Instead I watch Owen watch them walk off to their table, and I remember the elderly woman at the cafeteria two years ago who kept looking over at me feeding Errol his special bottle.

The old woman turns to us, across the room and through tears says, “They really are special.” I nod, lost in the shuffle of buttering Owen’s biscuit and mixing up another bottle for Errol. “I lost my boy when he was 32.” She says, and then went back to eating, unable to keep her eyes off our little family the whole meal. They sit for a long time after they have finished eating then her husband takes her arm to help her out of the restaurant and she looks back through glassy eyes at Errol laughing at his brother pushing slices of Jell-o across the table.

I remember thinking, that’s sad, unable to imagine Errol dying at 32, which seemed so far away, much less at 3 and a half. And now I realize that she was a prophet and I wish I had listened more closely to her warning and held Errol even more closely after that meeting.

I steal a glance at the family seated uncomfortably around the table, their younger daughter helping her sister keep her straw in her drink, and my mind is full of memories of Errol – imagining him here with us, wondering if things could have turned out any differently.

Running

2011-04-05T08:57:00.004-04:00

In the fragile days after Errol's death, art therapy, grief counseling, and Camp Carousel at Hospice has been a salve for our mourning family. There isn't much I'd run a mile for (much less 3.1) but Hospice has kept us moving, and so on April 16, I will run for Hospice.

I don't set an alarm for 3 in the morning to practice getting up each day, and being opposed to the idea of running, I had decided that my training for the 5K would be the race itself. But after numerous warnings about the necessity of training, the fear of being lapped by toddlers, and the beautiful April weather, I began my 5K training in earnest last week.

The hardest part of the training was the first block, I cursed the asphalt, rued the invention of running, and scorned my shaky body that disobeyed all my positive thinking. But as my panic passed, my muscles relaxed, I settled into a rhythm with the breeze, and thoughts of Errol propelled me along under the bright sky.

On Saturday, April 16, with Errol's name written across my shirt, in a sea of runners propelled by memory, your generosity will push me through the day, as I run in honor of Errol.

Hope Run

2011-03-29T23:01:00.003-04:00

I hate running, but Hospice meant so much to our family that I'm running the annual Hospice Hope Run 5K in honor of Errol.

Birthday

2011-03-07T20:45:00.005-05:00

Errol was born on March 8, 2006.
He loved to celebrate.
It's hard to believe Errol won't be with us for his big day.

Labyrinth

2011-01-22T13:10:00.003-05:00

Spring’s first attempt comes early, as the fledgling January sun pokes a hole through the winter, and warm sky fills with cotton candy clouds. Owen and I return to Hospice, and when his art therapy session is over, Owen bounds happily into the hallway, “Daddy!” he shouts. His smiling counselor, following behind, suggests Owen and I walk the labyrinth that is laid out on the floor in the conference room.

A table covered with candles, sprigs of sage, and a basket of small smooth pebbles sits just inside the conference room. Owen and I light a candle each for Errol, I slip a soft cool pebble into my palm, we slide our shoes off and walk towards the labyrinth.

The circular design of the labyrinth comes from the 15th century floor mosaics of Chartres Cathedral. There is one narrow path that twists and turns around and around itself, leading to the center of the circle and then out again. I step into the labyrinth, and follow the path through the lunations - the partial circles that form the outer rings of the labyrinth – and towards the labyrinth’s middle. The journey in is supposed to center my mind on Errol, and then after I leave my stone at the labyrinth’s center and follow the path back out, quiet my mind.

I step across the shards of light that break across the path, and Owen rushes ahead of me, tongue clicking – his happiest noise - hoping to beat me in the race he has imagined. The lane I follow coils in upon itself, snaking at once towards the center and then suddenly back out. My mind hums and crackles, alive with memories. Then Owen comes abreast of me, we are separated by only a thin line, and as he plunges ahead I hit one of the labyrinth’s 112 foils, which doubles me back upon myself, and away from Owen and the middle. The farther we walk, the farther we seem to get from the middle, but Owen doesn’t care, and skips happily onward, at triple my speed, his bobbing head catching the late afternoon light. “I’m already on my way back, Daddy!” he shouts out, triumphantly, as he passes me, returning from the middle. He skips across the labyrinth like a stone, while I sink deep into thoughts of Errol.

Long after Owen, who is already untying the knot of the maze, I arrive at the middle of the labyrinth. I uncoil my hand, and there is the pebble I had forgotten I was carrying for Errol. As I stoop to drop the stone in the basket, I see that there are already nine stones there: nine other lives, nine other deaths, nine other memories. Who are these rocks are for? I wonder. At the end of the day will these rocks be returned to the table for tomorrow’s mourners to carry with them? It all seems so futile. The maze. The circles. The rocks. Around, and around, and around we go. But Owen is smiling and running, running, down the lanes, making a game of it.

And then I drop, unexpectedly. I find myself on my knees, like a penitent. I should get up, I think. This will look odd. With the sunlight streaming through the window, and Owen hopping across the lines of the labyrinth, I think, What a silly thing to be on my knees, trapped in this web. I peer down into the basket, like it might hold an answer.

I remember a day almost twenty years ago when Cary and I were just married. It was late Saturday afternoon, the rains had left the city wet, and now, the sun had come back out for one last stand, the asphalt paths in the park steaming. Everyone had retreated inside, and as the sun returned for a moment before being swallowed back up by the evening we had the park to ourselves. I rode my bike ahead of Cary, following one pleasing sight and then another, and then I rode off the path and out into a wide green field that was bisected by gigantic power lines carrying electricity above the earth. Then, finding just the right place, I came to a stop and dropped my bike beside me onto the ground, and the next thing I knew I was on my chest, lying flat in the field, holding tight to the earth. I let go, turned over, and my eyes swept up and down the power lines, following the gray cables to the horizon where they stretched on, beyond my seeing. I imagined that the lines ran so far that they circled the earth, and met back here above me. The lines buzzed overhead, house lights brightened, the evening swelled like a wave, and I breathed in as much of it as I could. Twenty years later, back on the ground, encircled by lines, I exhale, stand up, and walk back down the path towards Owen.

Following his own rules, Owen speeds down the path like it is made of ice, heading back for a second pass. After a moment, we cross each other again as I head out of the labyrinth, and Owen, always in transit, skips away. As I shuffle forward with my eyes focused on the path, my vision narrows, and the room flattens like a horizon. The more I concentrate on the steps right in front of me, the further all thoughts fade until I find myself, back outside the labyrinth. Owen slides past me, “I won, Daddy!” and we sit beside the burning candles, put our shoes back on, and slip back into the warm afternoon.

Planting

2010-12-31T12:54:00.003-05:00

Outside our cozy house the earth is white. Mercifully, this long cold year is finally coming to an end. Perhaps in the new year something will grow from the hard lessons we have unhappily planted in the ground.

Dirge Without Music

I am not resigned to the shutting away of loving hearts in the hard ground.
So it is, and so it will be, for so it has been, time out of mind:
Into the darkness they go, the wise and the lovely. Crowned
With lilies and with laurel they go; but I am not resigned.

Lovers and thinkers, into the earth with you.
Be one with the dull, the indiscriminate dust.
A fragment of what you felt, of what you knew,
A formula, a phrase remains,—but the best is lost.

The answers quick and keen, the honest look, the laughter, the
love,—
They are gone. They are gone to feed the roses. Elegant and curled
Is the blossom. Fragrant is the blossom. I know. But I do not
approve.
More precious was the light in your eyes than all the roses in the
world.

Down, down, down into the darkness of the grave
Gently they go, the beautiful, the tender, the kind;
Quietly they go, the intelligent, the witty, the brave.
I know. But I do not approve. And I am not resigned.

Edna St. Vincent Millay

Searching

2010-12-30T23:12:00.004-05:00

As we get closer to December 23, our trip to Guatemala for Cary’s brother Roy’s wedding is a warm respite from our swelling grief. The historic town of Antigua sits in a valley between three volcanoes, and one morning, Owen and I sit on the roof of our hotel and watch ash billow from a volcano. The day after Owen’s Uncle’s wedding, the family leaves the comforts of Antigua to climb the 8,373 foot volcano, Pacaya. As we hike above the tree line, steam rises out of vents in the earth, and during a rest break we have to stand because the ground is too hot to sit on. After our break, we continue up, sloshing through volcanic ash, over pumice and rock, making our way, higher and higher. When we stop at a deep steaming fissure, the stick Owen throws into the searing crevice bursts into flame before it reaches the bottom.

One night, back home, the rush of Christmas passed, Owen dreams about Errol. He wakes in a golden mood, and the story of his dream spills from his mouth.
I was in Guatemala. These monkeys were throwing coconuts down to us. My brother was giggling. He really liked the monkeys chittering. We all liked what the monkeys did because most of the time it was funny.

The next day, at art therapy, Owen builds a sand volcano that buries all his figurines. At the end of the session, as Owen squirms between us, his therapist reports, “Owen is really working with an intense volcano metaphor!”
“The metaphor is intense,” I agree, “but Owen really did climb a volcano last week.” His therapist looks impressed. “Well, the volcano keeps erupting and Owen keeps trying to save everybody. And Owen is also scared about what might happen to him. He wants to be invincible.” We both look at Owen, who seems to have grown a foot taller over Christmas. “Remember what invincible means, Owen?” she asks.

Owen looks past us, into the thinning winter light, searching and searching.

Christmas

2010-12-29T22:45:00.004-05:00

I can barely remember Christmas day last year, just a day and a half after Errol died. The Christmas presents my mother had bought him were quickly wrapped and stowed in drawers where they remain.

This year, we receive our first white Christmas in memory. We drive through the fine snow to my parents’ house where Owen’s jolly cousins great us, and we march into the living room in chronological order singing, We Wish You A Merry Christmas. After the gifts are opened, my mother brings us Errol’s Christmas stocking, in which each family member has written down a gift Errol gave them: “his smile,” “his courage,” “his laughter.” The children gather around their grandmother, hoping to hear their own memories read aloud. The delicate flakes drift down from the luminous sky and cover the house like a blanket.

Silent Night

2010-12-24T08:58:00.005-05:00

On Christmas Eve last year our abridged family awoke without Errol for the first time since his birth; the way we will awake every day for the rest of our reduced lives.

Rescue

2010-12-14T13:09:00.003-05:00

I watch the Chilean miner rescue play out in real time. I’m thinking of all the people worldwide who are buoyed by the happy ending, living vicariously through the Chilean miners. My mind veers off into a fantasy and I think that if the rescuers save these miners we can go back and save our own beloved Errol. I think…

They will save the miners.

The doctors will save Errol.

We will be happy.

Everyone will be happy.

But as I watch the rescue capsule emerge from the Chilean mine with the first saved miner, the crowd erupting into cheers, his family shedding tears of joy, I am all alone, sorrowfully gazing into the screen, looking for Errol.

Our kitten goes missing and we look desperately for her, the loss of Errol amplifying our rescue efforts. Two days later I find our shell-shocked cat trapped behind a basement wall, pry her out, and bring her upstairs to the light and heat of the house. But I am distraught. It was so easy. Why does the cat get to survive and not Errol? Why couldn’t we save Errol too?

One morning, out at breakfast with Owen, a smiling woman ambles over to our table. “Errol got me through the ICU.” She quavers, looking up at Owen, her eyes glistening, “I kept thinking about that sweet little boy and he helped me make it.” All this time I thought we were the ones to save Errol, but it was Errol who was guiding us out of the darkness with his joyous smile and his ringing laughter.

Happy Memories from 2008

2010-12-07T13:39:00.002-05:00

Traces

2010-11-29T08:52:00.003-05:00

As the weather turns colder, reminding us of this time last year, Owen's suffering grows with ours. His grandmother bought him a little notebook with the Eiffel Tour on its cover, and when Cary found it lying on the floor of Owen’s room she opened it to see what it was. On the inside of his book, Owen had written in his sweet seven year old hand, “I Leov Errol pucuz Errol Is SOW FunE.”
I love Errol because Errol is so funny.

When she turned the page over she found scrawled on the back, “I rley wis errol was sdil uliv”
I really wish Errol was still alive.

I don’t know what prompted Owen to write these longings. I don’t know why he took the time to commit his yearnings to paper. Maybe he thought it would make Errol more permanent, or even bring Errol back (at least into his mind while he wrote), or maybe just to let the pain run out through his pencil. I don’t know why Owen writes these reminders, but I continue to find little traces of Errol everywhere Owen goes.

Tonight as we put Owen to bed we found a little exhibit of Errol’s pictures that Owen had curated on the floor of his room. Pictures of Owen holding Errol and pictures of Errol smiling up at us all lined up in a row.

We are building the boat as we sail it through this vast sea of grief.

Cousins' Ceremony

2010-11-03T10:37:00.004-04:00

When Errol first died I was more accepting of his death than I am now because I didn’t actually believe he was really, truly dead. It was easy to accept his death if it wasn’t real.

When Cary was in elementary school, each member of her class wrote down their home address and a note and put it in a helium balloon and launched them into the sky. About a month later she got a letter from a woman from the coast, 300 miles away, who had gotten her balloon.

The strings of fifteen colorful helium balloons dangle from the ceiling. We sit in a circle, each holding a picture of Errol we have chosen. We each tell a story about him. Owen beams as he tells everyone about how he and Errol had crowed into Errol’s crib together and then Errol signed to Owen, “I love you!” Errol’s uncles, aunts, grandfather, and cousins all tell stories, but when it is his eloquent grandmother’s turn, she cannot find words. She turns the picture of Errol to face us, pats her heart, and cries and cries.

Then we all sing songs Errol loved - The Wheels On The Bus – the kids leading us in the hand motions – and then The Itsy Bitsy Spider complete with hand gestures just like we did for Errol all those times. It would be so normal to look over and see Errol in his aunt’s lap, and it feels like he is here, but as I look around the room, I can’t see him anywhere..

Then the kids tell us they have a surprise for the parents. They bring out letters they have written in secret, decorated in bright colors, replete with hearts and the word "Errol." They are going to tie their words to the balloons we will launch for Errol.

We walk to the side of the lake and at Owen’s behest, launch our balloons and notes for Errol. At first it looks as if notes are going to keep the balloons from rising very high above the lake, but then suddenly, a draft comes and the shining balloons rise and up, up, up and fly over the mountains and off to the west out towards the sun.

I’ve never seen a balloon come down, never chanced upon the husk of an old helium balloon, but I know they must eventually come down somewhere. They must run out of air and come crashing back to earth. They don’t, as some of the cousins have worried, fly into the stratosphere, up over the edge of the horizon and out through the asteroid belts into outer space until finally they burn up into the sun. I’d like to know where those balloons go and what happens to them on their magnificent journey. I look back up into the sun for one last glance at the balloons, but they are gone.

Sweet

2010-11-01T21:39:00.003-04:00

I remember one of Errol’s very favorite games.
Cary gently slides a large napkin down over Errol’s head until it just covers his eyes. Then she sings to him "Where is Errol?" There is no response. She sings again, a little louder, “Where is Errol?” There is a little vibration under the napkin. She sings once more, asking more emphatically, “Where is Errol?” There is a mild eruption and Errol’s little hand pulls the napkin away to reveal a white-haired boy with a huge grin on his face, chortling with laughter.

February

2010-10-25T09:41:00.003-04:00

In February, a friend from Errol’s school whose seven-year-old disabled daughter died a year ago, brings her youngest daughter to our house for dinner. We tell Owen that this little girl might understand how he feels. As soon as they arrive, Owen’s mood changes completely. His tired and sunken eyes grow bright, his cheeks flush, he looks like his old self. And while they never speak a word about their siblings, as they alternate between playing happily and listening to their parents cry, these two young mourners are bonded in grief.

Our friend asks us, “Is the party over?” The mania of Errol’s memorial service is fading, and our shock is slowly wearing off. The reality of life without Errol is settling on us like snow.

Our guests step into the bathroom for a moment and as soon as they close the door, Owen asks if we can look at Errol’s ashes. I gingerly lift the beautiful pottery urn down from the mantle and remove the plastic bag that holds Errol’s ashes. I rub the nameplate, “Errol Clifford” and dissolve into tears as Owen stares into the ashes as if they hold the secret to the universe. When our friends leave, the little girl reaches to give Owen a big hug on the way out the door, but she squeezes a little too tightly and Owen cries and cries as we try to comfort him.

After our guests have left, Owen goes right to sleep. Suddenly at midnight he wakes up, vomits, and then falls right back to sleep.

The next morning he doesn’t remember any of it. I understand. I am forgetful too, and often feel nauseated, but mostly I’m just cold - cold and tired.

The next day, Cary and I dive out to Hospice to meet the art therapist who will be working with Owen, trying to heal the hole in his heart. I remember driving Errol to his doctor one afternoon. Errol’s doctor’s office is right across the street from a retirement community, which is conveniently located right down the street from a funeral home. A huge banner at the convalescent home read “Hospice Days!” and even with Errol sick in the back seat, I couldn’t help but laugh. “Hospice Days” sounded like a geriatric harvest, and I imagined workers from Hospice, dressed in Hazmat suits, driving rental trucks to haul away all these old folks, clearing out space at the retirement home for the next batch. And even with a sick kid (was it pneumonia? Croup? Bronchitis?) who wasn’t expected to live to see 20, laughing at Hospice didn’t seem morbid because, at the time I knew that Errol would live forever – he always had.

We meet Owen’s art therapist who describes the sand tray that will be the set for Owen to act out his emotions and memories of his brother. It is a safe and confined place where Owen can unbind his fear and grief and know that they won’t take him over. She explains that we can expect to see Owen in the midst of grief one moment, and then laughing the next. “Grieving kids,” she says, “are like stones being skipped across water.”

Just last week, I walked into Owen’s room and found him dissolved into tears. He cried and cried and then suddenly got up and started playing happily with his Star Wars Legos. “Owen,” I rasp, in my best Darth Vader imitation, holding my cupped hand to my mouth, “I am your father!”

Then we meet the therapist who will be working with Cary and me. She asks us to tell her the story of Errol’s life and Cary begins. “When I was a few months pregnant I went to get an ultrasound of Errol. The doctor told me that everything looked good, but I was convinced something wasn’t right, and I asked if the doctor was sure. ‘Yes,’ the doctor replied, ‘everything appears totally normal.’”

We take turns telling the therapist how joyful and delightful Errol was, then, very slowly, we are in the midst of Errol’s last days at Duke Hospital. “In mid December, right before his final surgery. Errol and I were footloose and fancy free for an hour.” I say. “We hooked him to a mobile oxygen tank and monitors and headed straight outside!”

“I hadn't been outside in two and a half days and Errol hadn't been outdoors for a single breath of air since he arrived a week and a half earlier. We sat on a bench at the front of the hospital for a long time, watching people scurry out of the hospital smiling, surprised by the balmy breeze.” I look away for the ending.

“Our trip outside the hospital turns out to have been Errol’s last time outside. As lovely as the evening was, we had to head back into the hospital to give Errol his medicine, but the medicine didn’t work.”

One afternoon, searching for solace in the library, I glimpse Errol in the words of William Blake,

Some are born to sweet delight,

Some are born to endless night.

Now that Errol is gone, so too is our delight, as if an eclipse has blocked the sun.

As much as I think about Errol, I can’t ever think him back.

It is like riding a merry-go-round. You travel far but you never get anywhere.

My favorite French particle physicist turned monk, Matthieu Ricard, traded a scientific career at the Jonas Salk institute for a life of contemplation in a hermitage high in the Himalayas.

“Isn’t it the mind that translates the outer condition into happiness and suffering?” Asks this smiling Buddhist monk. Somehow, Errol’s unusually wired mind makes him smile at the nurse who draws his blood, the doctor who taps his spine. By all rights, Errol’s physical life was endless night. But some switch flipped in his mind and made him delight in the little life he had. Although he couldn’t speak, his whole joyous self laughed out his answer to the monk’s question in sweet delight. I try to translate these long dark nights into something light, but without Errol’s steady smile I’m at a loss.

Owen is trying hard to think his way back to the dawn. He retreats from his empty room to his best friend’s house for some imaginary play: Roman in the role of the mother cat, Owen as mama cat’s six-year-old kitten. Mother cat has had a new baby, who is just back home from the hospital. The baby kitten, Mama cat says, is a little like Errol. He is going to have heart surgery, but the doctors are going to be able to fix him. The cats are singing to the baby kitty and giving him presents. They are telling him not to worry. The baby will be in the hospital for only two weeks.

The doctors have fixed the baby, and he's out of the hospital now! His name is Water Brother and the cat family is opening presents.

Two months after he died, I am finally able to watch a video of Errol. He is in the backyard swing in the summer of the postponed surgery - that saved his life for another year-and was probably the highlight of his health. I am holding Errol in the swing, close to my chest and then I let go and he swings far away from me and up, up, up to the end of his arc and he is laughing uproariously and then gravity pulls him back to earth and he is swinging toward me, and that is funny too, and his laugh continues as he swings past me to the other end of his arc and when he comes back towards me on the way back I yell, “I’m gonna’ get you!!!!!!!!” and reach out for him and he swings past me and he laughs and laughs and this goes on and on and he never tires of the fun.

The smiles and laughter become more rare as the summer wears on and Errol outgrows his heart. And by the time the next summer – his last summer – rolls around he is very sick and weak.

We miss Errol so much. More each day, it seems. The further we swing from his life, the more we miss him. Our heartache grows, the space between sadness contracts, our despair deepens, our ability to do other things diminishes. Can it get even worse still? Is there an arc of grief that will one day bring us back to earth? How hollow can you get without breaking?

Early one morning, about the time when Errol used to wake me up, I am lying in bed when I hear Errol. My heart leaps. I am thrilled. Has his death just been a horrible dream? But just as quickly, I am deflated, distraught. It is just the cat.

One night after dinner, our little family, now numbering three, watches videos of Errol. On the small screen, Errol is flapping his hand, his chin wet with spit from laughing, and he is smiling - so alive to the world. Suddenly, the video is over and Errol vanishes again.

The video upsets Owen, and after a few cloudy minutes he has had enough. We stop the tape and Owen brightens. A few minutes later, Owen jumps to the top of the sofa, mumbling something unintelligible, as Cary and I look at each other, wondering what he means. Then Owen whispers, “Errol’s ashes went with us to the movie today.” I must have misunderstood him, I think. But then Owen says, clear as day, “Errol’s ashes go with us everywhere. Errol is with us wherever we go. His spirit is always with us.”

Easter

2010-10-18T09:13:00.029-04:00

At first, after he died, Errol was still in my muscle memory. My muscles flexed when we went out the front door and I reached for his stroller. Flexed when I got in the car and braced my legs to counterbalance his weight in my arms. The longer Errol is gone, the more my muscles lose their memory and relax. It’s only when we go to the doctor, or Errol’s school, or to the farmers market, or do something we often did with Errol that my muscles tighten and warm.

But Errol is still in my head, in the constant loop of memories that conjure him.

I receive a visitation on Easter Morning. My head is full of beautiful dreams, backed it seems, by a soundtrack of loud brass music filling the night air. Then I awake disoriented, and realize I’m not dreaming, that it is Easter morn (barely – it’s 3:30 – don’t these people ever sleep?!) and the sounds in my dream are coming from the Moravian brass band assembled on our street corner to play hymns about resurrection and everlasting life.

Bands of peripatetic Moravians roam the city streets in the middle of the night every Easter morn to herald the good news of Jesus’s ressurection. Or at least that’s what they say they’re doing. I had heard a late night Moravian band once before when I was recovering at home from an illness, so this concoction of music, suffering, and healing seems very natural to me. At least, at 3:30 in the morning, half asleep and half clothed, it feels reasonable that a brass band would be on our street corner, playing 18^th century tunes, to herald spring and rebirth. Of course, these insomniac Moravians blowing their wake up call into a sleeping neighborhood probably don’t have the first idea about Errol’s death. Most likely, they have picked our house at random and aren’t doing anything more than just playing notes. But that morning, walking out into the dark, standing on the front porch in my underwear, listening to the hymns float through the humid night air, my head is filled with Errol and in my mind, these Moravians know our story – our loss, and this is an annunciation – a direct call - to us, to bring good news of our dearly departed Errol.

I fall back into a deep sleep but I still don’t dream of Errol.

Flying

2010-09-15T21:35:00.005-04:00

Owen speaks of Errol in the present tense. “Errol loves butterflies,” he says as we walk around The Children’s Center, where our boys once went to school together. When Errol died, his teachers erected a birdhouse in the school garden as a memorial. The garden is planted in raised beds separated by a smooth path so anyone in a walker or with crutches or in a wheelchair can get right in the garden and reach up and touch the poppies, hear the butterflies, smell the coreopsis.

Here, at the end of summer, perched above the riotous flowers and buzzing insects is Errol’s fanciful copper roofed birdhouse. Errol would have loved it all.

Owen learned to ride his bike today. He went from not being able to ride to riding in about fifteen minutes. But what a fifteen minutes they were. There was a moment, as I ran alongside Owen, gripping his bike seat, as he wobbled from side to side, that I thought he would tip over. And it was there at the height of my terror that Owen suddenly reached his balance and I immediately let go (or he broke free), and just like that, Owen was riding his bike. He was gone.

As Owen rode down the parking lot, my huge grin vanished and tears welled in my eyes. Errol never got to ride off into the blue wondering how the hell he was going to stop this crazy metal contraption.

I never let go of Errol until it was too late.

Owen On His Own

2010-09-15T20:55:00.001-04:00

Owen's Book For Errol

2010-08-19T20:56:00.004-04:00

Our friends bring their seven month old to dinner. His sweet little sounds remind us of Errol who, when he died at age three and a half years, was developmentally about seven or eight months old. After our friends leave, Owen disappears into his room. He returns a few minutes later with the book he has been writing about Errol. We begin to add a second chapter to it.

Owen dictates and I type:

Chapter 2

I really, really, really miss Errol because he died seven months ago.
He is my best companion in the family.

Errol is the nicest brother in the whole universe.
Errol was so important to me.

Errol, my mom, and my dad are my best companions in the family.
Errol was so great to me.
I really liked how when I held him he would giggle sometimes.

I really miss Errol and I wish he were still here with us.
If Errol were here I would tickle him, and play peek-a-boo, and hold him and never put him down.

Errol would really like the summer time because he loved warm weather.
He would have really liked the pool we went to the other day. I really miss him.

Errol would have really liked Owen’s birthday party.
He would have liked the big splash Owen makes on the diving board and he would have liked opening Owen’s presents.
He would have really liked playing with the wrapping paper of the presents.

After I write his words out for him Owen turns to see if I am crying, reaches to embrace me with a big hug, and says, “it’s ok, Daddy.”

But it's really not.

Owen, Cary and I go into the boys’ room to put Owen down for the night. Cary reads Owen’s book about Errol out loud and Owen says, “We should get Errol wrapping paper for his birthday this year.” Cary stares ahead and says, ”I sure miss that little boy” and she starts to cry.

Unasked, Owen rushes to the bathroom to gets his mother a tissue, but before he can come back we hear him break into a high lonesome cry. After a minute, Owen reappears with a tissue to his watery eyes and a fist full of tissues for our tears. We tell Owen that he is the best kid in the world, as we fall upon one another like rain.

When our tears finally slow, Cary says, “I was going by the food co-op today when I realized I had forgotten to pick up Errol.”

And this morning, I made the same mistake. After I drop Owen off for school I steer the car - for a nanosecond - towards Errol's school until I remember that Errol is not with me.

I really miss Errol and I wish he were still here with us.
Errol was so great to me.

Errol's Quilt

2010-08-17T21:03:00.009-04:00

Errol’s quilt, made from his clothes by our dear friend Stephanie, sits on the back of our sofa by day, and covers Owen by night.

Red and white plaid frames the quilt, and within the border are Errol’s black jeans handed down from his brother and now handed back down to us. I remember putting Errol on his tummy on a soft blanket, and folding his legs in these black jeans, up under him, hoping he would use his body, bent into the start of a crawl, to push his trunk forward. I hoped that would lead to crawling, then walking, then running. Of course, Errol had his own idea, and he just laughed and rolled over and then I tickled him.

There is a swatch of Errol’s blue denim jeans and their little man pockets that made him look like a little farmer.

There is the light blue plaid shirt that Errol’s mother especially liked and that I would dress him in on special occasions.

There is a blue and white plaid long-sleeved shirt that we put Errol in to go horseback riding.

There are the striped jean corduroy overalls that made Errol look like a train conductor. I have a picture of Errol in these pants with his train conductor hat, smiling for all the world. All aboard!

It is the little pockets adorning the quilt that get me - so empty.

The quilt is more than just Errol’s clothes; it brims with his smiles, and love, and joy.

Then there is the Joan Miro back of the quilt: riotous color and joyous patterns filling the canvas with broad stripes of red, blue, and green from Errol’s plush pajamas. It is what I imagine the flag of a country ruled by happy children would look like. There are the pjs with the stegosaurus and triceratops gleefully riding baseballs and footballs through outer space, enjoying impossible, happy dreams! There are Errol’s red velvety pjs that looked like a smoking jacket and made him look like a little playboy. And there are Errol’s sporty pjs that say GOAL above the upright, soccer playing alligator - uh oh! Errol wore these pajamas with his orange glasses that Sunday before his last surgery.

These are the clothes we put Errol to bed in, as we kissed him good night and wondered what he would dream of and how long we would be able to hold him.

Good night, sleep tight, wake up bright in the morning light.

Errol Laughing 2009

2010-07-29T22:45:00.000-04:00

Pure Joy

Owen's Ceremony For Errol

2010-07-29T11:34:00.008-04:00

We’ve never had a day like this at the beach before. The wind is blowing strong - out to sea - and has wiped the humidity from the air. We ride our bikes down the bike path along the canal and collect fallen bark husks from palmetto trees. The sun has bleached the outsides of the tawny husks, but the smooth concave insides – hollowed out like tiny canoes - are a cool dark brown.

Owen has the idea that that each member of the family will write a message to Errol on a piece of bark and then send their greeting out into the ocean. We have no idea where the messages will go, or if they will even float.

We sit on the porch, where we spent so many hours holding Errol, with pictures of Errol, a handful of magic markers, and the palmetto husks. We think of Errol and pen salutations, poetry, drawings.

I write: “Errol Is Pure Joy” and draw red hearts all over his bark.

After everyone is done we put our greetings in a basket and carry them out to Granddad’s boat. We push away from the dock and the wind kicks up. Owen sits on my lap, his mother beside us, and then Owen alternates sitting in Cary's lap, then mine, chirping nervously all the way on this lonesome journey. Grandma, Granddad, Cary’s siblings Jay, and Hope, and the three of us sail down the canal and into the wide river as the strong winds, choppy waves, and the outgoing tide pushes us out towards the sea. “Errol would have loved this!” Cary says.

The waves have never been higher on the creek, the wind never stronger. Gulls fly above, peering down into he basket to see if we have treats for them. My salty tears flow as I read the wishes his family is sending Errol.

It hasn’t been the same around here since you have gone.

You brought us such joy!

I remember your smile

Hello! Surrounded by a rainbow of hearts.

Owen simply writes:
Errol Errol Errol Owen Owen Owen

We sail down to the end of the island where Errol’s’ cousins, aunt, and uncle wait on the shore, waving to us. We anchor in the rough water and lift the basket of bark up to Owen. He starts with his own message and gently launches it into the tide. It bobs along in the waves and makes for the open ocean.

Errol Errol Errol Owen Owen Owen
Then Owen sends his uncle’s poem out to Errol, to the sea, to the universe…and then I follow with my own.

Cary sends her love out and then Owen follows with all the other messages that float and bob in a straight line out to the open ocean beyond.

Will someone catch one of these boats one day? Will the messages be wiped clean by the sun and the sea? Will they be blown back to us? It’s all a mystery.

A gull hovers above us and grandma sings a song to Errol; one that she’s sung hundreds of times at home and in the hospital:

“Hey Mr. Errol, Errol, Errol.
Hey Mr. Errol, how do you do?
Errol, Errol, we love you.
Errol, Errol, we love you!”

But there is no laughter or giggling response, just the sound of our sobs, the waves slapping the boat, and the incessant ping, ping, ping of the wind blowing the mast of a catamaran on the shore. Ping, ping, ping, ping, ping, ping.

Owen wants to sing another song to Errol, and we join him:
“Somewhere over the rainbow, bluebirds fly.
Somewhere over the rainbow, why oh why can’t I…”

Errol’s two cousins wade out into the murky water and Owen, Cary, and I jump off the boat to join them. I dive under the water and Owen and Cary join me under the surface, baptized in the mystery of the day.

Errol Errol Errol Owen Owen Owen

And then Cary, Owen, and I wade out of the ocean, up onto the shore, and dripping wet, walk home, alone - with no one to push - all the way back to an empty house.

Mystery

2010-07-09T09:53:00.004-04:00

And it’s all a mystery to me: why one person lives, and another dies. Why? Why? Why?

And we are at the beach – our first year without Errol - boating up a tidal creek and there is a cumulus cloud as high as Mount Everest, looming 30,000 feet above us. And the wind is slack, and the water looks like it has been wrapped in cellophane, and the dense green forest stretches down to the water. And we slow to watch the porpoises play in our wake and a gull flies overhead, calling down to us, and I think Errol accepted this mystery and enjoyed it as well as anyone. But that doesn’t make the space in my arms, where he should be, any less empty. And tears flood our little boat as we sail home into the orange sun.

We wipe the tears from our eyes, but it’s no clearer than the day Errol was born, or the day he died. It remains a mystery.

Six Months

2010-06-23T12:51:00.005-04:00

Today marks six months without our beloved Errol.
He brought such pure joy to the world.
He would have enjoyed this day, as he did all days.
Still, try as I might, I am filled with such sadness.

The Three Little Pigs

2010-06-18T15:27:00.003-04:00

Early in the morning, the students release the pigs into the school. It is April Fools Day, after all, and to make things more interesting the pigs are painted on their sides with the numbers 1, 2, and 4. It’s easy to imagine the administrators, on their walkie-talkies, roaming the school, sweating, out of breath, looking for number three and reporting to home base, “We’ve got one and two down in the physics lab, and four’s up here in the cafeteria, but we can’t find #3 anywhere.”

And here I am looking for Errol. It’s only been five months since we left him, and the other day someone said, “You must think of him every day.” And I think: Every day?!?! How ‘bout every hour, every minute, constantly! I am a glass of warm water and Errol is ice, and he has melted away-dissolved into me- and he makes me better and more than I was.

My senses are attuned to Errol: I see an automatic paper towel dispenser and there we are in the hospital, I hear bath water running and there he is, I smell sweet potatoes, and I am at the dinning room feeding Errol; but he is not really anywhere except within me, and I can look as long as the administrators look for number three, and I won’t find him out there. And I keep looking!

Good Night, Sleep Tight, Wake Up Bright In The Morning Light

2010-06-09T13:33:00.002-04:00

Last night I put Owen to bed and said “Good night”
And his mother said, “Sleep tight.”
And Owen said, “Wake up bright in the morning light!”

Owen’s words joined with ours to make the song we sang Owen and Errol to bed to every night of Errol’s life.

Good Night
Sleep Tight
Wake Up Bright In The Morning Light

And he always did. And he always was our bright morning light.

When Errol lay dying in his mother’s arms, when there was no hope he would get better, when it was time for his suffering to end, we wanted to do whatever we could to help ease his passage out of life. We unplugged Errol from all the ventilators and machines that were keeping him alive, and then we turned off his oxygen. As his little breaths got shallower and shallower and the space between them got longer and longer we sang Errol the goodnight song to help him let go. To help end his suffering.

Through sobs and moans Cary and I sang, over and over again, “Good night, sleep tight, wake up bright in the morning light.” Errol slowly stopped breathing until he was gone.

We have not dared to sing this song or even say these words since then.
But last night, Owen was ready to sing this beautiful song.

Errol Word Cloud

2010-05-14T21:38:00.011-04:00

Click on the image above to see the words from Errol's blog transformed into a word cloud! The more frequently a word is used, the larger it is in the word cloud.

Mother's Day

2010-05-09T22:57:00.008-04:00

I stood behind Cary, jumping up, waving my arms, trying to get Owen's attention as he shared his big news, “Mama, I’m going to wake up early to wrap up your secret presents; the bowl and necklace, and then Daddy and me are making you a surprise French toast breakfast.” He gets it from me. I have a hard time waiting for big celebrations. And today was a big one: Cary’s first Mother’s Day since our beloved Errol died. We’ve been dreading it for some time, but that didn’t stop it from getting here.

Owen was true to his word and woke up especially early to fete his mother, because he knows even better than I do, what a great mother he and Errol have. Had it not been for Cary’s strength, energy, optimism, brilliance, hope, tenacity, and love, Errol would not have lived a third of his three and a half brilliant years.

For this diminished Mother's Day, we did many of the same things that we did last Mother’s Day, just without Errol. We rode bikes in the morning, Owen behind me, on the tandem, and Cary on her bike with an empty child’s seat – Errol’s seat – behind her. I’m glad Cary couldn’t see herself, but I know how much lighter her bike was, and that she felt every ounce of Errol’s missing weight.

We rode to a baseball field and the whistling wind began to bend the trees. We threw our frisbee around our little family triangle and then, as the wind built, we threw our Frisbee up, up, up, into the wind which sent it right back to us, again and again. Owen always says that Errol is the wind, and I wonder if he thought Errol came to give his mother a visit on her special day.

We tried to celebrate this bright windy day, but every time the trees would bend and sway, we all thought of Errol. I remembered Errol in loving arms, on his grandfather's boat, out on the shimmering water, the sun beating down, and Errol smiling and smiling, full of joy with the wind on his face.

Life Is Round

2010-05-05T15:55:00.002-04:00

My favorite line in a Coen Brothers film comes from the scene in Raising Arizona where the escaped convict, Evelle, asks a grizzled old store clerk about some balloons he is thinking about purchasing, “These blow up into funny shapes and all?”

The grocer looks at his customer askance and replies, “Well no…unless round is funny.”

Errol thought round was funny, he thought his brother jumping on the bed was funny, leaves falling from the sky were funny, his three crazy doggies running around the house were always funny, chickens flapping the yard were even more funny, and snow was probably funniest. I remember rolling Errol out onto the porch his last winter, and pointing up at the big white flakes falling from the sky, and as sick as he felt, Errol looked right up at the snow, smiled, looked over at me, and then let out a little chuckle. For Errol, although his life was harder by far than any I have known, life was always round. After all, as Oscar Wilde said, “Life is too important to be taken seriously.”

Grieving

2010-04-28T10:43:00.003-04:00

Errol is in our thoughts all the time.

One night at dinner Owen suddenly smiled and said, “Errol is on your shoulders mama. He’s nibbling your food.”

“Hi, Errol.” Cary said gamely, turning towards her shoulder.

“Mama,” said Owen, “Now Errol is in your arms.”

Cary cradled her sweet boy in her arms while Owen looked on, his eyes smiling. Sometimes just going through the familiar motions of Errol, holding, lifting, laying down bring floods of joy and sorrow. “And he’s grabbing your hair.” Said Owen.

“Now I’m holding him, Mama.” And Owen rocked his brother in his arms. Then Owen pointed to me. “He’s on your shoulders Daddy.”

“Hi, Errol.” I replied, waving and smiling. And to explain my tears I said, “Ouch, he’s pulling my hair!” - which was Errol’s favorite game, after all.

And as suddenly as it started, Owen sang out. “Now Errol is the wind.” And that was the end of the visitation that Owen had conjured.

A few minutes later we finished dinner and went into Owen and Errol’s bedroom. I know Owen must feel lonely up in the top of his bunk bed with no one below to share his big room, but his pet chickens.

We read a children’s book about death called I Miss You and when we asked Owen how he was feeling he said, “I don’t know what’s going to happen next.” I told him that we didn’t know either (not reassuring perhaps, but true) but that we thought things were going to get better (which they do, until they don’t) and that he was going to feel better. And he is feeling better, these days. And we know that Owen misses Errol as much as he loved him (which is a lot) and that Errol will help Owen to grow up to be a very strong and loving man. But for now it’s heartbreaking to watch a little boy's heart break.

2010-03-15T11:10:00.003-04:00

Errol’s fourth birthday reminded us of Errol’s first tenuous day of life. As we move through these slow days of loss, it's clear how remarkable it is that we got any time at all with Errol (his sweet little body was not made for this world). It’s amazing he survived a day, much less three and a half years. How lucky we are.

Errol cheated death, and I think he knew it, and that’s what gave him that lucky-to-be alive glow that made the dark times more bearable, and the light times all the sweeter. We are so lucky.

And to think - we came a razor width away from never knowing beautiful, radiant Errol! How fortunate we are for the wonderfully joyous boy we got to share those beautiful days with.

∞∞∞∞∞∞∞∞∞∞∞

Brothers Dancing

2010-03-12T13:16:00.002-05:00

Errol and Owen loved each other so much. Here is a video of the two boys from last summer.

Birthday Fireworks

2010-03-09T21:10:00.005-05:00

We listened to a recording of Errol laughing, laughing, laughing.

We planted a peach tree for Errol - our little peach.

We shot off fireworks for Errol - who loved fireworks (until the police came and made us stop.)

We sat with family and shared stories about our beloved Errol that brought him (almost, almost) back to us.

It was a beautiful day. It was a horrible day.

Birthday

2010-03-07T19:57:00.006-05:00

Errol's birthday is Monday, March 8.

He would have been four.

We miss our sweet boy so much.

His mother took this picture of him last year on his birthday.

We will always remember Errol at age three.

Smiling.

Joyful.

Full of life.

Summer 2009 Errol Clapping

2010-02-23T11:01:00.004-05:00

We miss our sweet boy so much.

He died two months ago, today.
Here is a picture of Errol from last summer.

The Darkling Thrush

2010-01-08T10:38:00.004-05:00

by Thomas Hardy

I leant upon a coppice gate
When Frost was spectre-gray,
And Winter's dregs made desolate
The weakening eye of day.
The tangled bine-stems scored the sky
Like strings of broken lyres,
And all mankind that haunted nigh
Had sought their household fires.

The land's sharp features seemed to be
The Century's corpse outleant,
His crypt the cloudy canopy,
The wind his death-lament.
The ancient pulse of germ and birth
Was shrunken hard and dry,
And every spirit upon earth
Seemed fervourless as I.

At once a voice arose among
The bleak twigs overhead
In a full-hearted evensong
Of joy illimited;
An aged thrush, frail, gaunt, and small,
In blast-beruffled plume,
Had chosen thus to fling his soul
Upon the growing gloom.

So little cause for carolings
Of such ecstatic sound
Was written on terrestrial things
Afar or nigh around,
That I could think there trembled through
His happy good-night air
Some blessed Hope, whereof he knew
And I was unaware.

Memorial Service

2010-01-03T21:46:00.007-05:00

Errol Milner Clifford

March 8, 2006 – December 23, 2009

Unable are the Loved to die

For Love is Immortality,

Nay, it is Deity --

Unable they that love -- to die

For Love reforms Vitality

Into Divinity.

-Emily Dickinson

Order of Service

Prelude

Ivan Seng

Welcome

Richard Groves

Reading

Rick Mashburn

Music written for Errol and Owen

Ken Frazelle

Reading

Becky Brown

Words

Carol Kirby

Träumerei: Robert Schumann

Colin Fullerton

Silent Meditation

Richard Groves

Blackbird: Paul McCartney

Jeffrey Dean Foster & Billie Feather

Words

Eddie Ingle

Words and Benediction

Richard Groves

Postlude

Ivan Seng

Memorial Service

Errol Milner Clifford

December 30, 2009

Wait Chapel, Wake Forest University

Richard Groves

When I was a boy, two of my heroes were cowboy movie stars Roy Rogers and Dale Evans. I know now that they were B movie stars, but I didn’t know that then, and I wouldn’t have cared if I had known. One of the things that made them special in the eyes of a lot of people was their large family, which included four adopted children. In 1950 Dale Evans gave birth to their only birth-child, a daughter who was born with Downs Syndrome. Robin died before her second birthday. Dale Evans wrote a best-selling book about their daughter. The title played off an obscure verse of scripture found in one of those seldom read books in the back of the New Testament, the Epistle to the Hebrews. The verse encouraged readers to “show hospitality to strangers, for thereby some have entertained angels unawares.” That was the title of the book -- Angel Unaware.

You didn’t have to believe in angels, you didn’t have to share Dale Evans theology to understand that for this couple the birth of their daughter was not an undiluted tragedy, as some would see it, it certainly was not punishment for anything; it was a gift. She was a gift.

After she and Jonathan had finished writing the obituary for Errol, Kerry ran the article through word check and found that she had used the word “joy” eight times, including in the very first sentence: “Errol Milner Clifford was pure joy.”

We gather this winter afternoon, an impromptu congregation having only one thing in common – a three-year-old boy who had “a host of significant medical challenges, but that didn’t stop him from always being the happiest person in the room.” We have been summoned by a child who never spoke a word, who changed everyone he met just by being who he was. He was a gift to us all.

There are several organizations and groups of people that the families would like to thank for their contributions to this service:

Dewey’s Bakery and Krankie’s Coffee, who along with volunteers from Knollwood Baptist Church, are providing the reception that will be held after the service in the narthex (to which you are all invited);
Wake Forest Baptist Church for providing this space and assistance with the sound system;
Seeds of Love for providing ushers;
Redeemer Presbyterian Church for providing nursery workers.

Several people will speak this afternoon. Their names are listed in the Order of Service. There will be no further introductions. We will try to put our best thoughts and our deepest feelings into words, knowing that words are puny things, wholly inadequate to express that which is ultimately true. The music may say it better. A poet assures us that some things are “too splendid for speech but ripe for a song.” (Thomas Troeger)

Rick Mashburn

SAYING YES

We are so sad.

The harsh truth is that much of what we are feeling is unremarkable. Many lives are

mourned for being too short. Far too many lives are filled with struggle and pain. Even so, we

are here with such deep feeling, and in such great numbers, because of what was and will

always be extraordinary: The phenomenal life of Errol Milner Clifford.

To understand the phenomenon who was Errol, I go back to a happy afternoon six and

a half years ago. Cary was pregnant with Owen, Errol’s big brother. Dean Clifford, Cary’s

supermom, was hosting a shower. After the honorees opened gifts, after we admired the shiny,

squeaky and fluffy baby things, Jonathan asked us each in turn to offer a word of advice to the

parents-to-be. I have no memory of what I said, but I will never forget the response of Fred,

Cary’s dad. His advice: “Say Yes as often as you can.”

I thought that was ridiculous. Say Yes as often as you can? Isn’t that exactly what’s

wrong with kids these days? Indulgent parents who say, “Of course dear, you can have that

third bowl of ice cream even though we are going to have dinner in twenty minutes”? Come

on, Fred, that’s just crazy grandpa talk.

I don’t know if Jonathan and Cary intentionally took his advice. We may not have

talked about that. But in watching them as parents, I have learned that grandpa is not as crazy

as he seemed. To see what Yes has meant to Owen, all you have to do is drive past their house

on an afternoon when he has been out playing with his pal Roman. You will see proof of

childhood bliss all over the place, scattered in the grass, dangling from bushes and trees,

painted on the sidewalk, spilling off the porch. Those declarations of Yes will show you what

a creative, passionate, joyful, deep-feeling boy Owen has become.

Owen you will always be the very, very, very best big brother.

Cary’s labor with Errol was easy and quick. It was the last easy thing. One crisis

followed another. Days and nights brought panic, terror, anguish, despair. Being Errol’s

parents required physical and emotional endurance. There were times of relief and stretches

resembling normality, yet even the best of days took place against a backdrop of constant

worry.

But when the doctors said No, Jonathan and Cary said Yes. When the insurance

company said No, Jonathan and Cary said Yes. Medicaid: No. Cary and Jonathan: Yes. Five

heart surgeries, every one with complications. Long, long hospital stays. Countless infections.

All those trips to the emergency room. Endless medications, evaluations, therapies, checkups:

Yes. Yes. Yes. Yes. Yes. Yes. Yes. Yes. Yes.

They looked into Errol’s eyes and they said Yes. And when his eyes were closed they

held his hand or touched his foot and they said Yes. Never anything but Yes.

And Errol said Yes right back. He said Yes with those eyes, with his famous smile and

intoxicating laugh. His love for his family and love of life just bubbled out of him. Even his

hair was happy.

Did his parents keep Errol going, or was it the other way around?

His parents said Yes to us, too. With Jonathan’s lithe and heart wrenching words, with

Cary’s radiant photographs, with their generosity and grace and honesty and good humor, they

welcomed us into Errol’s life. And we were all enriched, whether we held him in our arms and

fed him, or knew him only from the farmer’s market, or from just watching him with his family as they sat a few tables away at Mary’s. Who could hear that laugh and not be in a better mood? He was playful. He was funny. The guy had charisma.

Without a speaking a word, Errol said Yes to everybody. Just think about what he

accomplished. He worked hard for his teachers and therapists at the Children’s Center, and his

physical and mental development surpassed professional expectations. He did his best, and he

brought out the best in us. He made us more accepting, more patient, more generous. He

inspired so much creativity: in his parents, in painters, musicians, cooks, gardeners, jewelry

makers. He brought neighbors together in a way that will have long-lasting reverberations in

our town and beyond. He even became a nationally recognized advocate for universal health

care.

Above all, he generated so much love. You can feel it in this room. He was one

powerful three-year-old.

Errol gave us much to ponder. This is what I keep asking: What was the source of all

that joy? Was it a special gift, unique to one child, or was it something we all have within us,

something we all could experience and share if we got in touch with our inner Errol. Think

how the world would be if we were all more like the Little Man, if our love of others and love

of life just bubbled out of us, if we learned to shout Yes as loudly as Errol did.

Rebecca Brown

Cary, Jonathan, and Owen, we have watched in awe and humility the incredible journey that you have taken over the last four years. Errol was a great gift to us. His purity and joy lifted us and even now carries us through the darkness.

You have been generous in sharing Errol with us. Thank you. We envy you your integrity and transparency and strength. When you asked me to do this, I searched for words that might capture your spirit—the foundations on which you live your life. Let me read two short passages.

One year, A. R. Ammons wrote a long poem on one of those old adding machine tapes. He started writing on the tape on December 6^th and came to the end of it on January 12^th. He called the resulting book Tape for the Turn of the Year. There is a passage in which he expresses his own stance toward life:

December 22. 10:17 p. m.

we went to church at 4

this afternoon:

I held a lighted candle

In my hand—as all the

others did—and helped

sing “Silent Night”: the

church lights were doused:

the preacher lit his

candle & from his the

deacons lit theirs &

then the deacons went down

the aisles & gave light to

each row

& the light poured

down the rows &

the singing started:

though the forces

have different names

in different places &

times, they are

real forces which we

don’t understand.

I can either believe

in them or doubt them &

I believe:

I believe that man is

small

& of short duration in the

great, incomprehensible,

& eternal: I believe

it’s necessary to do

good

as we can best define it:

I believe we must

discover and accept the

terms

that best testify:

I’m on the side of

whatever the reasons are

we are here:

we do the best we can

& it’s not enough

Those last two lines express the reality we all live in. It is never enough. Nobility comes in doing the best we can. You have shown us how to do that.

As many of you know, Errol was a big supporter of President Obama. It is fitting then, that I use Obama’s words taken from his eulogy for Senator Kennedy to conclude. President Obama said:

What we can do is to live out our lives as best we can with purpose, and love, and joy. We can use each day to show those who are closest to us how much we care about them, and treat others with the kindness and respect that we wish for ourselves. We can learn from our mistakes and grow from our failures. And we can strive at all costs to make a better world, so that someday, if we are blessed with the chance to look back on our time here, we can know that we spent it well; that we made a difference; that our fleeting presence had a lasting impact on the lives of other human beings.

Errol’s short life has and will have lasting influence. Today, we choose life--a life of purpose, love, and joy—as his legacy.

Carol Kirby

I am so honored to speak today on behalf of all of my friends and colleagues from The Children’s Center about our love for Errol. Errol had the largest circle of friends of any three-year-old I’ve ever known. The staff, students and families at our school were a big piece of that circle. Errol’s true second home was The Children’s Center, and we think of ourselves as his second family.

Many of you have driven by our little red brick building on the corner of Coliseum and Reynolda for years. It looks like it could be a daycare center, but it is actually a very special public school, and a United Way agency, for children birth through age 11. Most of our students were born with physical or developmental challenges. It’s a place where kids work hard to reach their highest potential, and it’s a place where families’ lives are transformed by a sense of community and belonging. But the most important thing for you to know is this – The Children’s Center is, above all, a happy place. Our director, Mike Britt, likes to say that it’s the most inspiring place he’s ever been, including church. He’s right.

Cary and Jonathan first walked through our doors holding tiny baby Errol almost three years ago. When I met with them that first day, they were still trying to process the frightening fact that their child was very sick. As we toured the building, the sight of so many wheelchairs and strange devices must have taken their breath away. It was just beginning to sink in for them that they had joined a new club. The members of this club don’t sign up; membership is thrust upon them.

Emily Perl Kingsley, a writer for Sesame Street and herself the mother of a child with disabilities, wrote a story in 1987 called “Welcome to Holland.” Her story tells us how Jonathan and Cary must have felt in those first weeks and months of Errol’s life, and on that first visit to The Children’s Center .

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland, and there you must stay.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's a different place. It's slower-paced than Italy, less flashy. But after you've been there for a while you catch your breath, you look around.... and you begin to notice that Holland has windmills.... and tulips… and Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

So Jonathan and Cary found themselves in Holland. But just as Emily’s story tells us, Holland is a lovely and special place in its own right. As we walked through the school with Errol that first day, staff after staff member stopped Jonathan and Cary in the hall to chat. “What a beautiful boy!” “How old is he?” “When will he be starting school here?” So, Jonathan and Cary made the decision to share Errol with us. And I don’t mind telling you that they were a little wary at first. “How can we put our sweet fragile baby in school? How could these strangers ever love him and care for him and meet all of his needs?” Cary politely but emphatically let us know that she would just be “hanging around” in the classroom. In case we needed her. All day. But it wasn’t long before she saw that Anne, Audrey and Paula loved Errol as if he were their own baby, and that our nurses, Shelley and Becky, provided him with an impeccable level of care. Soon Cary was dropping him off, trusting us to do what we do so well.

How can I describe to you the great fun Errol had at The Children’s Center, and all the progress he made? He found brand new ways to engage with the world. He learned to press buttons to activate toys, and to participate in circle time. He was delighted by music classes with Dr. Beall, and stories read aloud. He loved the sunshine on his face during recess, and the paint on his fingers during art. Jonathan reports that Errol cackled and squealed with delight every day as they drove into our parking lot.

Jonathan and Cary were surprised to learn, after a year had passed, that we would be promoting Errol from the babies’ room to a toddler classroom. How could new teachers possibly be as caring and dedicated as Anne, Audrey and Paula? Karen, Susan and Tamara in the toddler room were soon just like family, too. Then when Errol turned three last March, we told Jonathan and Cary that it was time for another big step – we were moving him up the hall to “big school” – a three-year-old preschool class. Big school? Up the hall? The inside joke between Cary, Jonathan and his new teachers, Jennifer and Paula, was that Errol was being sent to “boot camp.” But Errol had an absolute blast. Preschool meant new friends, field trips to the grocery store and the fire station, therapeutic swimming classes, and even horseback riding.

Errol found a comfortable home with us – but in truth so did the entire Milner – Clifford family. When we opened a regular kindergarten class last year, Jonathan and Cary signed big brother Owen right up. What a great treat it was for us to have both of these handsome, brilliant boys in our school! Cary began arriving in our lobby every Friday at noon with a basket of her delicious sandwiches and sweet treats. I am willing to confess that during particularly tiring weeks, the thought of one of her pimiento cheese sandwiches, and a giant oatmeal raisin cookie, might have been all that kept me going until Friday! Jonathan’s amazing blog about life with Errol allowed everyone to keep up with his progress, his milestones, and of course his opinions – Errol’s opinions, not Jonathan’s – on things such as George Bush’s foreign policy. (Errol thought it was reckless, by the way.) What would we do without Jonathan’s very gifted and sometimes wickedly-funny writing? Even as the world came crashing down last week, Jonathan found the energy and time to help us all through the darkness with his words.

Errol lit up our school like a firecracker. With my office right by the front door, I had the joy of seeing him roll into the lobby each day with a grin as big as anything I’ve ever seen. Errol, with his shock of Albert Einstein hair, and his professor’s glasses. He greeted each staff member and each friend with an open heart,and an eagerness to connect. He had a gentleness and a kindness of spirit that we, if we have any bit of sense, should all try to emulate. His teachers, every one of them, first say this if you ask about Errol: He was a happy child. As Jonathan also noted in his blog, Errol seemed to be in on the world’s biggest secret: to live in the moment.

In a class I took this fall, I was able to pick my own topic for a photo-essay assignment. I chose to focus on Errol. I ended my essay with these words about him:

Do you know many preschoolers who have:

· Raised over $50,000?

· Started an organic bakery?

· Inspired a “Day in the Park” for heart health?

· Gathered a neighborhood together to prepare a meal for 300 people?

· Started a “back to gardening” movement?

· Taught a whole community of children to look beyond disability when making friends?

And these are just the things Errol accomplished outside of school – his extracurricular activities!

Cary has already promised us that the sandwiches and treats will continue on Fridays. Both Cary and Jonathan have asked to volunteer at The Children’s Center with the teachers and students they love so much. All of us gathered here today have struggled this past week to make some sense of this great loss, to look forward with some sort of hope. Cary and Jonathan have shown us the way, which is no surprise.

The Children’s Center family – teachers, assistants, custodians, therapists, office staff – I wish I could name every one - will be eternally grateful that we were chosen to be a part of Errol’s journey. Jonathan and Cary, thank you for sharing Errol and Owen with us. Thank you for being residents of our little corner of Holland. Errol was as unique and miraculous as a tulip, and as beautiful and rare as a windmill. He was truly a Rembrandt – a masterpiece.

Richard Groves

A memorial service is by its very nature a corporate event in which we remember, we grieve, we celebrate and we offer support to our friends and family members. But grief is perhaps the most intensely personal and private of all experiences. It seemed appropriate that we provide a space in which each of us can deal with our own memories, thoughts and feelings. I encourage you to use the next few moments to pray, meditate or simply to be in this moment of profound silence. If you wish to have a guide for your meditation, we have provided a poem sent to Cary and Jonathan by two of Jonathan’s former students. It is by Emily Dickinson – “Unable are the loved to die.”

Eddie Ingle

Today I speak on behalf of Jonathan and Cary’s friends and neighbors in Washington Park and all those who supported Seeds of Love for Errol, many of you who are here today.

Errol is a beacon in our community, and Jonathan and Cary, you can be so proud of the fact that Errol brought hundreds of friends and neighbors together to work together for a common purpose, and taught our neighborhood that when people work together with trust and respect and effort anything is possible.

In our hearts there are three words that perfectly describe Errol. These words are Happiness, Loving and Teacher.

Happiness is defined as: Feeling, showing or expressing joy. And if you close your eyes for a moment now, and picture Errol’s face, with his open smile, bright eyes and cool black glasses you will remember that he radiated happiness. That is who Errol Clifford is. And that is how we will always remember him, a boy who could, in a matter of seconds, make his contagious smile or laughter brighten our day.

Errol’s happiness came from so many places and from everyone he met; and it was as if he was able to take the joys of the world and store them inside for when he needed the reserve, or you needed them.

On the night of the Seeds of Love party, there was a room full of people, the mayor had just spoken, children were darting about as the singers from the School of the Arts performed, and I looked over at Errol, who was beside his father, and wondered what he was able to comprehend about the event. He could not tell us what he felt, but by the look on his face, I did not need to hear his words, as he sat next to his father Jonathan laughing and clapping. As Jonathan has always said, “Errol is the happiest person in the room”. And he certainly was that night and all who were fortunate to be there were happy alongside him.

As one of my friends said, “Errol’s store of happiness is still here, ready for us to use as we need it.” And I encourage all of us, over the coming months and years, to remember and draw strength from Errol’s exceptional joy and happiness for those he loved and the community that loved him.

Errol gave his love unconditionally and it was the purest kind. Errol broke down barriers, created a natural sense of trust among people, and Team Errol was created and became united because of our love for the little man. Errol’s love was indeed very powerful

How did this young boy get so many Washington Park residents to start vegetable gardens? How did this three-year-old get chefs to cook a meal for almost 400 hundred people?

How did Errol get film students from the School of the Arts to make a movie about seeds of love? How did the little man get lawyers and architects to weed the gardens, for free? Simply put, it was because we all loved Errol.

We loved him enough to pick our produce in the pouring rain, and laugh while doing so, two nights before the party. We loved him enough to give our time and energy through the summer to help him and his family. We loved him enough to throw him one of the biggest parties any us of had ever been to.

The love that Jonathan, Cary and Owen have for Errol they graciously shared with all of us and allowed our community to develop strong binding relationships through Errol that would not have been otherwise possible. We are privileged and indeed honored to have been able to partake in the love they had for their beautiful child and brother the power of that love will keep Errol with us forever.

Errol is his father’s son, He was an educator who taught us so much. He taught us to value the simple things in life. He could watch his hands and delight in the fact that he could make his fingers dance in the sunlight. He taught us about the power of community and how we can connect with each other, we just have to be open and trusting like he is. Team Errol trusted each other, and with Errol as our guide somehow the gardens grew, the food got cooked, and the band played on. He taught our children not to shy away from those who are different, or have a disability. The children in the neighborhood, including my own, learned to look past his wheelchair, and to not be afraid of him because he was different. They learned how to have fun with Errol by playing peek a boo or singing to him. He taught us to accept life as it comes and not to let the physical world affect our state of mind. What he taught us is etched in the deepest parts of our hearts and minds and this legacy will live with each of us every day.

Errol, at age three, you are a hero to us. Your sweet and gentle smile, and incredible sunny outlook, convinces me that you found the golden key and purpose to your life.

Thank you so very much for masterfully using that golden key to unleash the power of love and real community into our neighborhood.

Your beautiful life and example will live with us forever and we will appreciate and love you always. Thank you.

Richard Groves

Cary and Jonathan, one of the remarkable things about the beautiful obituary you wrote for Errol was the lengthy list of people you thanked – doctors, nurses, teachers, friends, co-workers, family members, most of them by name. And well you should have. Hearing of their acts of love and devotion, I recalled something an elderly man said to me: “I didn’t accomplish very much. And I ain’t leaving much in the way of material things. But I had the best friends in the world.” So do you. On this day of mixed sorrow and celebration that is one thing you can be truly thankful for.

In the days ahead there will be times when you will need them again. And knowing you, you will think, “I can’t take advantage of my friends after all they’ve done.” Sure you can. That’s what they’re there for. They will tell you that. We know that there is a limit to what we can do. There are places we can’t go. There is a holy of holies deep in the human heart where promises are made and dreams are stored and hopes and fears reside. We can’t go there with you. No one can. We can’t do much but we can stay upright. So lean on us when you need to.

Since this is a time for expressing gratitude, there are a couple of things I think your friends and family would like to thank you for. We would like to thank you for the example of love, commitment, strength and patience you have given us. You have shown us that love is no weak reed. In the words of ancient wisdom, “Love is strong, stronger than death” (Song of Solomon 8:6)

Jonathan, we would like to thank you for taking us along on your painful, joyful, profound journey. Your blog took us to places we never expected to go, and we are better for it.

Our hearts ached when you spread out for all to see the sense of helplessness and hurt you and Cary felt as you watched your dear boy undergo procedure after procedure, surgery after surgery.

We were sobered by your honesty, like when you pondered, “If it were suddenly possible, would I have Errol undergo an operation that would increase his IQ by 30 points or so and make him typical?” And when you answered your own question:

Errol will probably not be tremendously analytical, quick, or abstract in his thinking, but Errol is sweet, lives in the moment, and most importantly is tremendously happy. Errol is exactly what I hope to one day become. I don’t know how Errol would answer the question himself, but as for me I would never choose to subtract one ounce of joy from our blissful Errol boy. (11/02/06)

We didn’t expect to laugh but we did when you said that “Errol is about as stressed as the Dalai Lama after a few drinks” and when you reported that there is a psychiatrist at Duke Hospital named Dr. Looney and a urologist whose name even retirement does not allow me to say out loud in this context.

Thank you for sharing your journey with us. Thanks for sharing Errol with us.

Recently, I was shown something I wrote a long time ago. To be honest, I had completely forgotten it. It looked only vaguely familiar. But I think it sums up my basic outlook on life as well as anything could. I would like to offer it as our benediction today:

From mystery we come,

to mystery we go.

And the coming

and the going

and everything in between

is gift.

2009-12-28T07:02:00.007-05:00

CLIFFORD WINSTON-SALEM - Errol Milner Clifford was pure joy. He was born on March 8, 2006 and died in his parents' arms on Wednesday, Dec. 23, 2009. From his first breath, life was a physical struggle due to a chromosomal defect that caused Errol to have a major heart problem as well as other systemic health issues. Errol faced all these challenges with an incredible joie de vivre, as though he knew every day was a miraculous gift. Although severely limited by his disabilities and the suffering he endured through five open-heart surgeries and long hospitalizations, Errol found more joy in his short life than most of us find in decades. He was delighted by the simple pleasures most of us forget to enjoy: squealing in delight as his beloved brother, Owen jumped off the sofa, bursting into laughter as his grandmother sang him a song, and howling with joy as we approached the Children's Center every morning. Errol never learned to speak, but his first sign was for "love," and he loved more profoundly and openly than anyone we have ever known. He loved his brother, Owen best, and showered all of his family, his friends, and the spectacular teachers at the Children's Center with an affection so pure and true that all those who cared for him fell in love with him. His love widened to an entire community when a neighbor from Washington Park, Eddie Ingle, realized that Errol's family was struggling terribly under the weight of medical debts and organized a fundraiser called Seeds of Love for Errol. In the process of raising more than enough money to pay these debts, an extraordinary group of friends and neighbors came to see past Errol's disabilities and know his beautiful spirit. We would never have known Errol's fabulous personality if not for the heroic work of many brilliant, courageous and dedicated medical professionals. Dr. Susan Hunsinger and the entire staff at Advance Pediatrics have become like a second family. Dr. Mike Hines and Kari Crawford, many kind nurses including Jen Twito, Leslie Butcher, and Keyatta Lackey, and Dr. Mary Christiaanse of Baptist Hospital gave us the medical miracle of Errol's first three years. The staff at Duke Hospital did everything possible to save Errol in his last two months, and gave him the ultimate gift of a dignified and peaceful death. We especially thank Dr. Ira Cheifetz, who was a kind and compassionate guide in our darkest hour, as well as Dr. Ron Kanter, Dr. Kevin Hill, and all the nurses who cared so well for Errol in his last days, particularly Casey Saylor, Laura Gorsky, Rebecca Smith, Jane Claire, Lexi, Maggie, Ashley, Sue, RaeAnn, Janine, and many others. We thank the entire community of the Children's Center, in particular his teachers, Audrey Campbell, Paula Sladky, Anne Clayton, Tamara Levi, Susan Colbert, Karen Ranson, Jennifer Pegram, and Paula Gavlik. We are also especially thankful for the loving support of Mike Britt, Carol Kirby, LouAnn Spell and Julie Hanes. We will always be grateful for their belief that Errol's health, happiness, and intellectual development were worth their constant loving efforts. We thank our generous friends from Team Errol, who expanded our definition of family and carried us so that we could carry Errol through his last year. We have relied particularly on our great friends, Clare Fader, Brad Cokendolpher, Rick Mashburn, Ken Frazelle, Eddie Ingle, Katy O'Kennedy, Betsy Towns, Becky Brown, Becca Fuller, Bill Watkins, and Mary Haglund. We would also like to thank the staff of Camino Bakery for their compassionate friendship and for beautifully maintaining the family's business through many tragic and uncertain days, as well as Jonathan's colleagues at UNCSA for their limitless generosity and kindness. Finally, we thank Errol's aunts, uncles, and cousins, who loved Errol so well, and especially his grandparents, who helped us greatly with his care and loved him like he was their own son. In lieu of flowers, please send contributions to the Children's Center in Errol's honor.

A Cape Fear River Memorial to Errol

2009-12-27T20:54:00.003-05:00

Christmas Day 2009

A Cape Fear River memorial to Errol
(please follow link to view slideshow)

The weather was overcast and misty
as we gathered flowers from Becky's garden.
A dish of whole flowers and petals was prepared
and we took these to the SOLOMON T.
As we warmed the motor, a pelican joined us
on the transom to get a better look.
The Moravian Star in the photo is part
of our boat's Christmas decoration.
And then we were for the Cape Fear
as sunlight sifted through the clouds.
We released the flowers into the tossing,
surging current, their colors standing out
against the swirling river.
Soon the tide would turn for home
and the river would run back to the sea,
once again part of this great ocean planet.

Capt. Bert Felton
with help from Becky, Melissa, and David

Memorial Service

2009-12-25T21:41:00.010-05:00

A memorial service for Errol will be held on Wednesday, December 30 at 2:00 p.m. in Wait Chapel at Wake Forest University in Winston-Salem.

More details and updates on memorial service arrangements to follow.

Please post any special memories, photos or videos of Errol on the comments button below, send them to jonathanmilner@hotmail.com or bring them to the ceremony.

There will be tears of loss and tears of joy! There will be music!

View Larger Map

Christmas

2009-12-25T04:25:00.001-05:00

2009-12-23T18:15:00.003-05:00

Errol Milner Clifford died in his mother's arms with his father at his side surrounded by his beloved family at 4:45 pm on Wednesday, December 23.

Bad News

2009-12-22T22:33:00.003-05:00

The doctors just found a blood clot in Errol's inferior vena cava.

Having a clot is extremely serious and its treatments carry many risks.

We are trying the least dangerous of the bad options and giving Errol lots of heprin (a blood thinner). The risk is that he will bleed profusely. At this point, Errol is recovering from two surgeries, fighting an infection, and now dealing with this blood clot. We are watching his labs and hoping against hope. I am afraid Errol is up against too much.

5.3

2009-12-22T06:42:00.002-05:00

5.3!!!!!!

Hot Damn!

Go Errol!

Good Trajectory

2009-12-22T06:06:00.003-05:00

This is a picture of Errol from his third birthday

Good six a.m. lab results. Lactate down to 6.3 (from 6.9).

We are headed in the right direction. Go Errol! Go!

Tears of Joy

2009-12-22T04:40:00.002-05:00

Tears, but tears of joy. We are still in the weeds, but right now Errol's sats are up, blood pressure looks better, and Errol is doing better all around. The PCICU team is amazing. Errol is rallying, we are still on the edge of catastrophe, but we are pulling ahead. Go Errol! Go! We miss you so much. We want to see you smile. You are so beautiful. Come back.

2009-12-22T04:31:00.003-05:00

This is another picture of Errol from his third birthday

We are hoping for good labs in the next few hours!

We are still in the most crucial hours.

We have shed many tears.

Still, there is laughter between the tears.

A fellow in the PCICU told me the following story about Duke Med.

There is a psychiatrist at Duke named...

Dr. Looney.

There is a urologist at Duke named....

Dr. Wiener.

I looked it up. It's totally true.

Dry your eyes.

Think of Errol.

It's close to morning time.

We'll keep you updated.

Good Lab Report

2009-12-22T04:11:00.003-05:00

This is a picture of Errol from his third birthday

It's the longest night of the year. We just got Errol's 4:00 lab report back. His lactate levels are coming down, which is great. This afternoon they got up to around 9 which is really awful. Since the surgery they have been dropping, which is what we want. Now we are down to 6.9 and the goal is to get them to less than 3. As the lactate level goes down, the efficiency of Errol's heart goes up, and the health of his vital organs increases.

We are very far from out of the woods, and beyond the woods are shark infested waters. Things here are still grim, but we are, at long last, on a positive trajectory.

Waiting

2009-12-22T01:48:00.003-05:00

Errol's pacemaker is in. The surgery was a success. Errol's heart is working much better now and is probably pushing out around 30% more blood. Because of the infection and Errol's cardiac arrhythmia, Errol's organs were not getting enough oxygen and by this afternoon were in crisis. Now, thanks to the pacemaker, Errol's organs will get better support. Now we get to hurry up and wait for the labs to come in and tell us about his organ function. Everything depends on what happens in the next few hours.

This is a picture of Errol from his third birthday

Emergency Surgery

2009-12-21T22:55:00.005-05:00

Dr. Lodge, the cardio-thoracic surgeon, just started emergency surgery on Errol to install a temporary pacemaker to give his heart more support. They can't move Errol to the OR so they are going to do the procedure in the PCICU. Cary is with Errol. I am a mile away with sleeping Owen (who has no idea what's happening) who I can't take to the hospital (no kids allowed). Heroic Benjamin (my brother) is driving from Winston to Durham right now so I can dash to the hospital to be with beloved Errol. The procedure should last until about midnight.

Bad News

2009-12-21T19:57:00.005-05:00

Errol definitely has an infection and it looks like sepsis. This is an extremely dangerous condition for anyone, but our doctors think Errol has an immune deficiency, and that will make his path even more precarious. We will do a CT scan tonight to try to locate the source of the infection and we are treating his infection with a variety of antibiotics. Things are grim.

This is a beautiful picture of Errol from the past year

Postponed Surgery

2009-12-21T11:10:00.003-05:00

Hold the phone. Errol's pacemaker surgery has been postponed until...???

Errol's blood is doing funky things and they can't risk surgery until his blood behaves or he might bleed to death! Some very, very, very, smart people up here in the PCICU can not explain why Errol's blood has gone all wonky, so hematology (vampire) doctors are going to come look at him today and will hopefully figure out what Errol is up to. CURVEBALL strikes again. Once Errol's blood is back in the acceptable range we will head back to surgery but that won't be any time soon. We miss Errol so much, he's right here in front of me, but he's more doped up than Keith Richards and we haven't seen his smile in a week. We'll update you when we figure out what's going on with Errol's blood and when we get our rescheduled surgery time.

Love

2009-12-21T08:47:00.001-05:00

This is the picture of Errol and his pure love that I will focus on at 11:00 today.

Special

2009-12-20T19:45:00.003-05:00

Owen in Duke Gardens

Errol will have surgery tomorrow morning to install a pacemaker. It will be open-chest, not open-heart surgery, and the doctor said that on a scale of one to ten, with one being a cake-walk, and ten being the most fantastically dangerous, Tuesday's revised-Fontan was a ten, and tomorrow's surgery is just a two. So we will be a few steps down from panic-stricken. The surgery should help Errol's heart be stronger and more efficient which should give him an added zing as he recovers. Think of Errol around 11:00ish in the morning. We feel the love coming this way!

Light

2009-12-19T10:30:00.005-05:00

It snowed here last night. It's really cold but beautiful.

Errol is really out of it right now - post-opish. They've got him sedated and doped up on pain meds (sounds like my twenties). No operating heavy machinery for Errol, today. He had a really bad day yesterday - working so hard to breathe - and the PCICU team wants him sleeping and stable for the weekend so that he can get his strength back.

Errol is most likely going to have surgery to have a pacemaker installed either Monday or Thursday. We still hope his heart becomes synchronous, and there are some encouraging signs, but if things stay the same they will have to open him up.
They say it's not a big deal, "we just go into the chest, but we don't have to open up the heart." Try telling that to Errol's poor chest which is just now starting to heal. But I suppose it's better now than later.

We will definitely be here for Christmas and almost certainly for New Year's. Before you feel too sorry for us, please know that there is an espresso stand in the hospital!!!! I know that won't make Errol feel better (they won't let me put him on a latte-drip - bastards!), only getting healthy and home will really do the trick.

Sometimes when I see Errol in pain, straining for breath, miserable, pulling at his tubes, suffering, I wonder if we are doing the right thing to work so hard to save him. I wonder if there is enough light in his life to outweigh the suffering. But if I step out of the PCICU tunnel and look at just one picture of Errol smiling, the wondering stops.

Before the last surgery, I thought we were going to lose Errol. I thought: this is the best person I've ever known (sorry Katie Couric), he's achieved enlightenment, he's spreads joy to all. What a huge pity to lose such a rare and blissful light.

The snow is starting to melt outside. It will be a long time here at the hospital but one day we will step out into the sunlight and Errol will look up to us and smile.

Blue

2009-12-18T18:29:00.003-05:00

Errol had a rough afternoon with low sats and trouble breathing.
To try to help him get more oxygen, the docs sedated Errol and put another chest tube in to drain off fluid from his right lung.
They drained off about 350 ml (a can of pepsi worth of fluid), but that wasn't enough
to bounce his sats up, so about an hour ago, just as the sedation was wearing off, they re-sedated Errol, paralyzed him (so he couldn't move and hurt himself, and then re-intubated the Little Man. The breathing tube went right in and now Errol's unparalyzed, sleeping soundly, and his sats are back up. Whoo Hoo!
Now all we have to do is get those tubes back out!

Two Steps Back

2009-12-18T10:53:00.004-05:00

They don't allow visitors in the PCICU from about 7:00-9:30 each morning. When I left Errol at seven he was struggling just a bit to breathe, but otherwise, he was doing pretty well (all things considered). When I returned at 9:30 Errol had taken a turn for the worse. His sats had dropped and they had him on a mask (check it out - it is made to resemble a purple chicken head - what kind of sicko made the decision to buy masks that look like chicken heads?). Also, Errol has fluid in his right lung, so the docs have sedated him and are putting a chest tube in - again. They've also started him back on his heart medicine, which should also make it easier to breathe. If draining his lungs doesn't help Errol breath they will have to re-intubate him (put a breathing tube down his throat - no fun). We have definitely taken two steps backwards today. But we've done the hospital two-step before, and it's pretty much how Errol rolls. I hate for Errol to be in so much pain, to work so hard to breathe so little, and I hope we can start moving forward again!

Hold the presses. Errol is stable, but a monk just walked into the PCICU and I just about jumped out of my skin. When I think of monks I think of last rights (or Belgian beer - and there's not one bar in this whole damn hospital!) And they call this progress!!!!

Day four PCICU

2009-12-18T08:06:00.005-05:00

A picture from last year's Christmas

The docs have weaned Errol from his cardiac meds and now his sweet little heart is working well all on its own! Unfortunately, Errol's heart is still arrhythmic, and we are hoping it will straighten itself out (as hearts often do). I'm thinking of Errol's heart right now and imagining it beating synchronously. Join me, it might just work!

In the quest for tube free Errol, the Little Man was extubated yesterday (go team!)
2 - 4 - 6 -8 Who did we just extubate! Errol! Errol! Errol!
and his sats are pretty good (for Errol - I'd be on my knees - wait, I am on my knees - I'd be passed out) but he's having a hard time breathing. We don't know if the breathing difficulty is because of pain - he's mostly off pain meds (he's tough as nails, they stick Errol for blood and he doesn't even flinch or wake up) - or if it's because of his partial lung collapse (not unusual in post-op). The docs may have to stick a chest tube in him this morning to drain off the right lung, or he may just get better. While you are sitting there with visions of synchronous hearts dancing in your head, take a second and imagine his lungs drying out. But not too much. We don't want to dehydrate the lad!

There is a ton of science up here in the PCICU but there is also a lot of art involved (knowing what to do and what not to do, when to do it, when not to do it. There are hunches, bets, guess work, hopes.) It's fascinating to watch. Most doctors try to pass their hunches off as hard science, but these Duke docs are good enough and confident enough to tell you when they don't know. We appreciate their transparency.

So, as Errol loses tubes and lines (an untethered Errol is the goal) the main problem right now is getting him to breath easier. Do your visioning homework and check back for updates.

Cary and I moved into a friend's sunny Durham garret last night. It is so comforting to be in a cozy home with shower, fridge, and stove - hot damn! We are dividing our days and nights at the hospital (1st shift: 4 am til noon; second shift: noon - together!!!!; third shift 8 pm til 4 am). We have been apart from big brother Owen since Tuesday and we miss him so. We are ecstatic that he will be joining us this afternoon - hooray! Owen's life and his Christmas dreams have been totally disrupted by this hospital stay, and we are determined to make this as fun a holiday season as possible here in sunny Durham! The snow will help!

This is a different life than we expected, but it's an exciting one and dear sweet Errol has made it so rich and deep.

Your love buoys us through these rough seas.

Slow and Steady

2009-12-17T21:12:00.003-05:00

Two steps forward and one step back = one step forward.

Merry Christmas

2009-12-16T21:58:00.007-05:00

Errol the Day Before Surgery

Brother Owen had been hoping that we were going to be home for Christmas, but ever since the day of Errol's surgery, when Santa put in a guest appearance at the hospital - along with amazing presents, Owen's been hoping we'd spend Christmas right here in the hospital. It looks like he's gong to get his wish.

And here's an early Christmas present. Errol just got his foley tube out and the PCICU team is talking about extubating him in the morning. Whoot! Whoot!

We are moving at a slow pace, but everything is positive. Like Errol.

Ho! Ho! Ho!

Owen Waiting for Santa at Duke On Surgery Day

Errol in PICU

2009-12-16T17:34:00.006-05:00

Errol is in the PCICU (Pediatric Cardiac Intensive Care Unit - picked a peck of pickled peppers) recovering from his surgery.

He is stable and taking small steps towards being 100% Errol (he's at about 35% right now). The goal is to slowly but surely take tubes and wires out of the Little Man, and so far we've gotten one of two chest tubes out and are aiming for an extubation (removal of the breathing tube) in a few hours. Unfortunately, there are still four central lines, one peripheral iv, pacer wires into his heart, a foley catheter into his bladder, and about twenty leads monitoring his vitals. One day he will be just Errol!

We've also learned a few things about Errol's physiology since the surgery.

Errol has arrhythmia (the top of the heart isn't communicating with the bottom of the heart and isn't beating just right) and if it doesn't resolve itself he will need to have a pacemaker put in (another heart surgery). We are, of course, hoping his heart will get back in synch on its own, as hearts often do.

We also found out that Errol's surgery was "touch-and-go" and that he needed a lot of support at the end of the case. All surgeries are dangerous, but this one took Errol right to the edge. At the time of the surgery, we didn't know how tight the margins were, and it's just as well; I don't think we could have borne it. Sometimes I feel like I'm living under water, holding my breath, unable to come up for air; or maybe I'm a fish living in this world, unable to go under for water.

It wasn't just the operating room that was scary. We also have had a few "serious" moments in the PCICU (say PCICU ten times) this morning where Errol's blood pressure dropped precipitously. We've been through some rough patches, but right now, Errol is stable and not feeling much pain.

Recovery is not a straight line, but as long as the trajectory is upwards, we can handle the dips.

And we will have plenty of help with the dips tonight. One of Errol's favorite nurses, Keyatta, from the Baptist Hospital PICU works at Duke now as a Nurse Practitioner, and she is going to be in charge of Errol's care tonight. Hooray! Talk about continuity of care...

We are very grateful for all of the love flowing from points north, south, east, and west.

We'll keep you updated and post much happier pictures next time.

Great News

2009-12-15T14:45:00.004-05:00

Great news!
The surgery was a success!

The doctors lowered Errol's body temperature during the surgery to slow his bleeding and now they are warming Errol back up (350 for 25 minutes?) Errol is off the heart-lung machine and the surgeon is stitching him back up and he will soon be up to the Pediatric Cardiac Intensive Care Unit for recovery.

It's still going to be a long and bumpy road to full recovery, but Errol's heart is working on its own, and better than ever (while they were under the hood they fixed a leaky valve).

We feel all your love!!!
Now on to the PCICU!
More updates to come.
Ring them bells!!!!!!!!

Surgery update

2009-12-15T11:12:00.002-05:00

Errol is in surgery right now.

Errol's surgeon, Dr. Lodge (who switched in for Dr. Jaggers because of a scheduling problem), has started the heart-lung machine which will keep Errol alive while they work on his heart.
It will be a while longer before they take Errol off the machine, but all is going according to plan, and thankfully, there have been no big surprises.
We feel the love!

Surgery has begun

2009-12-15T09:07:00.001-05:00

Surgery

2009-12-14T20:57:00.003-05:00

Errol's surgery is at approximately 6:30 a.m. on Tuesday morning. It will probably last about five hours.

Thank you for all the love!

Keep the love coming!

Errol's Family

2009-12-13T21:23:00.004-05:00

We feel so much love from so many!

Owen was determined to see his brother again today. Errol was thrilled to oblige.

Owen wasn't the only guest. The Little Man received Grandmothers, grandfather, aunt, uncle, and the entire (all 7 of them) bakery staff in his royal suite. Errol loved the attention.

Errol's champion pediatrician, Dr. Hunsinger, drove two hours each way in the pouring rain to visit. Dr. Hunsinger brought a dose of optimism with her and insisted that Errol looked great and was going to be strong on Tuesday. She gave the whole family a prescription of hope!

And we feel the love, prayers, thoughts, dancing, meditation, light, laughter, and more love flowing in from all points! Keep it coming.

Think of Errol!

2009-12-12T17:55:00.003-05:00

Errol is scheduled for open-heart surgery on Tuesday at Duke.

His doctors say that Errol's endocarditis (heart infection) has made this surgery much more dangerous than the open-heart surgery he had in August.

The cardiologist said that we will be at Duke for another month if Errol survives the surgery.

We are devastated.

Think of sweet Errol.

Going Up?

2009-12-11T21:05:00.004-05:00

A wise friend once told me that what she loved about living in New York City was the range of emotions she experienced every day. She should have moved into Duke hospital.

Today, after a lovely lunch in the cafeteria (just kidding) I walked past an XXL family, with kids in tow, slouching towards the elevator. We all climbed aboard, and as the elevator doors closed, a security guard rushed over and thrust his arm out, reopening the doors.

“Sorry folks. No kids allowed upstairs in the hospital.”

It’s true. Owen hasn’t seen Errol for two weeks. We even told security Owen was a 40 year-old midget with a close shave, but it didn’t work. We’ll try the old catapult next time.

The mother protested her child being bounced from the hospital, “But they let him in yesterday!” She protested.

Now, when you stop and think about it, the old ‘but I broke the rules before’ argument is pretty lame. “But officer, I killed yesterday!”

Which, of course, doesn’t stop me from using that argument myself. In fact, it worked nicely in the Ronald McDonald Room yesterday! Besides, I hadn't rollerbladed all week!

“That’s the rules, folks.” Said the guard.

“But his daddy’s terminal! He's not gonna last long!” Cried the boy’s mother.

“That’s the rules, folks.” Repeated the guard. And remember, when in doubt, say it again, and that's just what that guard did.

"That's the rules, folks." And the family got off the elevator, and, as far as I know, the boy didn’t get to see his dad.

Later, I saw a mother wheel her newborn son out of the hospital. How they got those wheels on that baby, I’ll never know but they sure were movin'! The mother and father were so proud. So full of love. Just starting out. The baby looked pissed. It was 40 degrees (just a wee big colder than inside mommy's belly.

That afternoon, a grinning man got on the elevator and asked all of us how we were doing. We all froze. What did he really want? Was he going to sell us something, start shooting, yodel???? Luckily, he didn’t yodel. Of course, the reason he asked us how we were doing was so we would ask how he was doing. Which is why sad people (and bears, for that matter) don’t ask elevators full of people how they are doing. They don’t want to be asked themselves.

But the category-five grinner wanted to be asked. No one wanted to be the one. To fall further into this intereview in reverse. But we still had at lest hree floors to go (if the elevator didn't stall, the hospital run out of power, and the seven of us test BMIs until we could decide which one to eat first. Arghhhh! So before we went down that road (that's where I live, by the way) soon enough someone begrudgingly obliged.

And how are you doing today?

He didn't have to think about his answer whic he gave full throated answer like a meuzzin leading a prayer.

"I'm so glad to be alive!" You don't hear that a lot, by the wasy, out in civilian world, its not the first time Iv'e heard it at Duke. It;s not the first time I've said it. So who was this man: cancer survivor? Now father? Owner of the patent to the Zhu Zhu pets? Whoer he was, he was alive, and he was happy. And we were too, at least for a moment. Even those of us who were sleep-deprived, hungry, sad, terrified, just a little gassy(sorry, crew), depressed, anguished. At least, just for a moment we all felt all of his joy coursing through our ears and eyes and bodies. Then the doors to the fifth floor opened and I headed off to Errol.

I ought to ride those elevators more often. Sometimes they go up, and sometimes they go down, but no matter what, they are always moving.

Whatever you do, just don’t get off on 0!

Santa Claus gloves up!!!!!!!

2009-12-11T11:54:00.007-05:00

The holidays are an especially sad time to be in the hospital, but the nurses and doctors work hard to bring some cheer to the kids: Larry the bipolar bear (sometimes it doesn't work). Today, Santa and his elves visited the 5300 hallway of Duke Hospital with a cart full of teddy bears. I didn't tell them that Errol is Jewish. He loves his toy bear but the bear seemed a little depressed.

I'll order some Lexapro for the bear!

Merry Christmas!!!!!!!!!!!!!!!!!

It still looks like Errol will have his open-heart surgery on Monday. We'll keep you updated.

Open Heart Surgery Part Three, Part Two

2009-12-10T21:39:00.006-05:00

We got bad news in the cath lab today. Errol's infection has done serious damage to his heart and he is going to need to have open-heart surgery on Monday. Dr. Jaggers (great name!!!) is going to perform a Fontan procedure (a repeat of the operation Errol had in August). This time, the cardiologists are going to hit Errol with some heavy duty antibiotics to make sure the infection doesn't return. We will be moving our base of operations to Durham on Monday and will remain here while Errol recovers - probably through Christmas. Poor Errol. Life keeps throwing him curve balls, but he is always such a trooper. He is a wonder!

Going Up and Going Out

2009-12-09T20:38:00.011-05:00

Errol and I were footloose and fancy free for an hour today. Untethered from those damnable machines that keep him alive, we went straight outside!

I hadn't been outside in two and a half days and Errol hadn't been outdoors for a breath of air since he was incarcerated a week and a half ago.

It felt great. The warm air soaked into our pores, a salve for a week of sticks and stones.

When it comes to hospitals, people are usually a lot more happy going than coming. And as we sat on out bench for a luxuriously long moment we watched people scurry out of the hospital smiling, surprised by the balmy breeze.

Errol's heart cath is tomorrow morning at 11:00 am. Dr. Hill walked us through tomorrow's procedure. He carefully explained that safety would be the highest priority in the cath lab. He reassured me by explaining that he would never treat a patient any differently than he would treat his own children.

I asked him if he had kids.

He doesn't.

Hmmmm....

I can't wait 'til Errol is done with his catheterizations, blood draws, and late night x-rays and we can be outside of the hospital all the time.

We get to ride on the service elevators to get our daily x-rays. Service elevators are the VIP lounges of the hospital: sleek, exclusive, fast, full of gorgeous scantily clad women (ok, not the women part unless you count the patient in surgical gowns headed in for liposuction.) The first class status of the service elevators can tun the most lemony day into lemonade. As we headed down to the first floor this morning on the SERVICE ELEVATORS, I noticed a button for 0 floor that I had never seen before. I asked our transport assistant about the secrets of 0 floor. She had to tell me - we're bff since we go to x (that's short for x-ray) twice a day! She named her twins after me!

She wouldn't tell me.

I am starting to know the ins and outs of this place: its lingo, its rhythm, which food not to get from the cafeteria (none of it - not one bite if you ever want to leave on your own two feet), and which of the doctors are really doctors, and which are homeless people wearing medical gowns. It's nice to be an insider - even in a place you don't particularly want to be inside of, so I soldiered on and asked my transpo-hommies, "What is that zero button for?

"Uh, um, s s supplies." my mobile friend stammered.

She gave a nervous glance to her transport colleague who was also on the elevator.

He glanced back at her and cast his eyes down at the ground.

"What kind of supplies do they have down there?" I naively asked. Thinking of aspirin, bandaids, and Duke Medical Center bumper stickers (people don't put a whole lot of those hospital bumper stickers on the backs of their cars: OBX, BHI, DMC!!!!)

My transport friend looked sheepishly at her hands.

Her colleague looked around and then, when she thought no one was listening, bent down, and whispered in my ear, "that's the morgue."

Oh, that kind of supply: dead people, zombies, Sarah Palin. That's not my idea of a good way to get out of the hospital.

In the end, it was a swell trip to x-ray, and I learned something valuable: I will never, never, ever press the 0 button on the VIP elevator.

*I didn't really ask the doctor if he has kids. He does.

Breaking News

2009-12-08T20:40:00.009-05:00

There is good news.

Errol has turned a corner. He's doing much better and is eating like a champ!

But there is bad news.

Somebody edited the bipolar bear.

Now Larry's just a polar bear.

But don't be discouraged, there's even more good news.

Errol got new eye glasses today, which makes him a total playah!

And the first thing he got to see with his new glasses was his beautiful mama.

And finally there is this news (not fun, but necessary).

Errol is going to have a heart catheterization on Thursday at Duke. The cath will be both diagnostic, to explain his effusions, and corrective, to coil his collateral vessels. The procedure should last about two hours and Errol's social secretary thinks he'll be home by the weekend. But don't count on it.

Wish Errol a safe catheterization on Thursday!

Banana Redux

2009-12-07T19:30:00.004-05:00

Errol just finished the other half of the banana and ate an ounce of milk!!!!!!!

Go Errol! Go!

Banana-Rama

2009-12-07T17:47:00.001-05:00

Errol just ate half a banana!!!!!!!!! Oh my god! One small bite for little man. One big bite for mankind!

I am soaring!

Bi-Polar Bear

2009-12-07T15:09:00.012-05:00

During the holidays, the windows of Duke Medical Center are adorned with seasonal cheer. The window drawings are supposed to make people feel better, but the hospital is still full of sick people.

On a large fifth floor window up on the children's wing someone drew a large polar bear with big cheerful letters exclaiming, "The Polar Bear wishes you Happy Holidays!" A naughty person edited the drawing by adding "Bi" in front of "Polar Bear", saddling the poor mentally ill mammal with a pre-existing condition.

Up on the ninth floor the large windows look out on the helicopter pad! This is where the flights of hope land. Where they bring the sick for one last chance...

Just inside of the helipad, the windows are covered with big colorful ribbons above the names of various strains of cancer: breast, brain, and my favorite, testicular (which you, gentlemen, have a 1 in 300 chance of getting.) I don't know if seeing a list of cancers is supposed to make us feel better, less alone, or just grateful to be alive, but there were a lot more people hanging out with the manic-depressive uninsurable bear than with the parade of cancers.

As if the ribbons didn't create enough pathos, someone had carved out of the purple ribbon, "La vida is corta" life is short.

Sunlight seeped in through the cut out words. Further down the windows, someone has written Voltaire's instructions about what to do about it.

Errol knows about shipwrecks, and he certainly knows how to sing...

We go to the hospital to be born, and to die. The hospital hums with joy and sadness and final hopes. Errol is ever so slowly getting better. He's hardly eaten in the past two days, but his chest tube is out and he is hoping to fly home.

I'll be home for Chanukah

2009-12-06T17:16:00.008-05:00

Errol's chest tube is now draining at a nice slow pace (a good thing), so the docs will probably cap off the tube, and if there is no more fluid output for 24 hours(ish), take the tube out. Whoot!!

They say a chest tube hurts like the dickens, but Errol (Mr. High Pain Tolerance) isn't complaining. He's also not eating or drinking at all (he won't even touch the tofurkey I made him). Luckily, Errol's on iv fluids so he's staying hydrated, but please, Errol, if you're reading this, make like a camel at an oasis and drink, drink, drink!

We don't know for sure, but we imagine that once the chest tube comes out (ouch), Errol'll probably start drinking and eating again. And (probably) once food magic happens, the docs'll send him home (please!!!) But you never know...

As for the near future, the cardiologists will either do a heart cath as soon as the chest tub comes out (which will extend our stay in sunny Durham) or, they'll send Errol home until he's kicked his endocarditis, and then bring him back for cath-o-rama later this December. How's that for definitive!

Stay tuned for more uncertainty.

I'll be home for Christmas?

2009-12-05T21:38:00.007-05:00

Errol had another stoppage in his chest tube and his afternoon x-ray revealed a growing pleural effusion. The wonderful nurse practitioner unclogged his tube, yet again, letting lose another torrent of fluid, and making Errol feel better (see picture), and (finally) eat! They've just done another x-ray (number 20???) and we'll see what it shows (hope for clear lungs!!!!!)

It's been almost a week now since Owen last saw Errol (no kids are allowed to visit the hospital) and it's wearing on him. He was singing a Christmas song today and then suddenly the Christmas words were gone, replaced with "PICC line, PICC line, PICC line" over and over again. We try to get Owen to share his feelings and talk about Errol, and sometimes he does, but most often his feelings come out in surprising places.

Hopefully Errol will be home soon and "PICC line" will be replaced with a happier holiday song!

One step forward, two steps back

2009-12-04T22:24:00.005-05:00

Errol's chest tube got stopped up today and a surgical nurse practitioner had to unclog it. After just a moment at work, a torrent of fluid came gushing out of Errol's chest. Losing all that fluid should make Errol feel a whole lot better, but we wish we knew why he had so much fluid on his lungs to begin with, and wether this will be an ongoing problem. To answer all our questions, Little Man might need another heart catheterization, which means that we will be spending a lot more time at Duke Hospital.

Errol is so resilient, and you can from his picture that Errol is trying to make the best of the situation, but he's had a hard week. Keep him in your thoughts!

Good News: The Chest Tube Is In

2009-12-03T11:24:00.007-05:00

Errol's procedure is done! The chest tube is in, the fluid is coming out, and Errol will be going home in a few days. The good news is that the fluid is clear (probably no infection), the bad news is that this may happen again (this is a somewhat common consequence of Errol's last surgery).

The Pediatric Cardiac PICU nurses fell in love with Errol. When the nurses administered his versed (sedative) our little drug addict just laughed and laughed. The whole room fell for Errol.

Errol is a sweet and funny boy and we're happy that he's on the road to recovery.

And the winner is..........

2009-12-02T19:49:00.003-05:00

Chest Tube!!!!!

The pediatric cardiothoracic surgeon is going to insert a chest tube into Errol's lungs tomorrow morning. Luckily, Errol will be asleep.

Poor Errol has had to endure a marathon battery of x-rays, ultrasounds, and Echos, a late night peripheral iv insertion, and an early morning rethreading of his PICC line (not for the faint of heart.) It's hard enough to watch, you can imagine how hard it would be to endure.

Hopefully, the chest tube will clear up Errol's lungs once and for all and we'll stay out of the hospital for at least the rest of the year.

Errol is incredibly brave. Think of him around 10:00 tomorrow morning.

What is the pleural of effusion?

2009-12-02T13:12:00.005-05:00

We thought we were going home, but Errol's lungs have different plans. Errol has a pleural effusion (water on the lungs) and he's not going to get better until his lungs are drained as dry as the Atacma. The docs will decide this afternoon if the drainage will be achieved with meds (the patriotic way) or a chest tube (ouch!) The cardiology team will vote on lung management around two this afternoon and you can cast your vote on-line. Either way, we'll be at Duke tonight and we'll hope to return home tonight (in our imagination), tomorrow (with meds), or - most likely - Sundayish (with chest tube.)

We are feeling the love that you are all putting out into the universe (Errol says, "uh-oh!) Thanks for your thoughts, prayers, and on-line voting.

Little man is a fighter. He's been, stuck, x-rayed, and echoed more times than I'd care to remember. Hopefully we can get these lungs clean and Errol can get back to running the country.

Water water everywhere and not a drop to drink

2009-12-01T13:27:00.011-05:00

Water is central to the rituals of many religions. It is thought to have mystical properties.

Devout Hindus purify themselves by bathing in the holy waters of the Ganges.

Pious Christians are dunked or sprinkled in water as part of their spiritual rebirth.

The Hopi, Anasazi, Navajo and other American Southwestern tribes practiced elaborate rituals to produce rain.

Seventeen years ago, in the highlands of Chiapas, Cary and I witnessed Maya worshipers rolling chicken eggs along the village of San Juan de Chamula's Catholic church's dirt floor with a Coke can (I'm not making this up-don't tell the Pepsi Cola Bottling Company!) Water (or Coca-Cola, in Chiapas) is central to spiritual and material life.

Last night, our little Errol went through a rebirth ceremony of his own.

The great frustration of dehydration is that when we become dangerously dehydrated, like Errol has been, we can not take the very liquids that our survival requires. Over this past treacherous Thanksgiving week, Errol has only consumed a precious few ounces of liquid a day, and has become more and more withered.

To stop Errol's precipitous drift away from health, the Duke doctors pimped out his PICC line and bombarded him with potasium chloride (zero calories, and that same great Coke taste!)

After only a few minutes, the change in Errol was unmistakable, and after a few hours of working their way through the little man's body, these fluids of life were reintroduced to the world in a tsunami of urine that just about drowned the little man - next time I'll ask them to outfit Errol with a flotation device.

The bed was wet, but Errol had been cleansed! After we cleaned Errol up, and repaired the levees, Errol and I slept more soundly than we had in the past two weeks. Hallelujah!

Duke

2009-11-30T23:15:00.004-05:00

A nasty virus has hit Errol hard and he's been admitted to Duke Hospital. Errol is seriously dehydrated and the docs are reviving him with a tsunami of fluids.

Errol's been very sick for over a week now, slowly descending towards oblivion, and we can't wait to have our sweet little smiling boy back.

Errol's Progress Report

2009-11-18T10:51:00.007-05:00

When we first stepped foot in the Children's Center, almost exactly three years ago, Errol was six months old, recently diagnosed as profoundly disabled, and we were feeling desperate and alone. Mike Britt, the school's director, promised us that The Children's Center would become a second home for Errol who would say his first words and take his first steps there. A tiny light began to flicker.

Over these years, we have watched in awe as Errol and his schoolmates have made great strides! Every little hard won step is celebrated!

Errol has spent three splendid years at The Children's Center, surrounded by love and buoyed by support. We're not on a perfect trajectory to health and happiness (the light flickers on, then dims), but thanks to his school and its courageous little students, there is always a light at the end of the tunnel. Errol is not walking or talking yet, but he's making progress, and most importantly, he is loved.

Starting the race

2009-11-12T23:19:00.005-05:00

Errol came home from Duke Hospital on two different antibiotics that have to be administered intravenously every eight hours. Not to mention his other meds, his food, and his nightly pedicure! OOOOOOOOOOOOOO.

When Cary was pregnant with Owen we couldn’t wait for her to have the baby. The birth seemed like the goal, later we realized that birth was the starting line, not the finish.

We were desperate to get out of Duke Hospital with Errol, but as soon as we were discharged we realized that we were about to start another race. With this race, not only were we entered in a decathlon, we were wearing ice skates.

The events in the Errol decathlon include the iv flush, the diaper relay, the downhill sleep, and the ever popular baby lifting. It’s hard work.

The thing they left out of the future parents of disabled kids PowerPoint presentation was that we would have to be far more than just parents. We are Errol’s nurse, accountant, social worker, advocate, doctor, physical therapist, personal trainer, and beautician.

It's a non-stop job and it doesn’t pay very well...unless love is your currency. And that makes us rich beyond compare.

Kindness

2009-11-09T10:34:00.008-05:00

Errol has turned many of our expectations of life on their head.
But expectations are ephemeral, always just out ahead of you like the road in the night just beyond your headlights. They can't be counted on.

In other words...As the poet Naomi Shihab Nye put so very beautifully:

Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.

Oh, how Errol has taught us what kindness is!

...Here is the whole poem

Kindness

Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.

Before you learn the tender gravity of kindness,
you must travel where the Indian in a white poncho
lies dead by the side of the road.
You must see how this could be you,
how he too was someone
who journeyed through the night with plans
and the simple breath that kept him alive.

Before you know kindness as the deepest thing inside,
you must know sorrow as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.

Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day to mail letters and
purchase bread,
only kindness that raises its head
from the crowd of the world to say
it is I you have been looking for,
and then goes with you every where
like a shadow or a friend.

Naomi Shihab Nye
from The Words Under the Words: Selected Poems

Hoops of Steel

2009-11-07T21:58:00.009-05:00

There are a great many people to thank for Seeds of Love for Errol. We’ve been rescued from an absolute abyss, and if it hadn’t been for Team Errol (the folks who organized Seeds of Love), our friends, and family, we can’t imagine what might have happened to us. We live our days full of gratitude for the gifts we have received, and we hold our community tightly. As Polonius admonished Laertes in Hamlet, “Those friends thou hast and their adoption tried Grapple them to thy soul with hoops of steel.”

Click on the photograph below to view a slideshow of the Seeds of Love for Errol dinner!

Getting to Duke

2009-11-06T23:34:00.003-05:00

When your life is topsy-turvy, strange things can make you happy, Last week, we actually celebrated when Errol was diagnosed as having had a seizure. After all, Errol’s seizure wouldn’t leave any long-term negative effects, and now that it was over, Errol could get back to the business of running the country. The only problem was that the underlying cause of the seizure remained undiagnosed.

Last Tuesday was a beautiful day and I took Errol, Owen, and Owen’s beloved best friend Roman to the zoo. The zoo animals were active and alert in the crisp fall air, but throughout our safari, Errol slipped further and further from us. First his laugh left, then his smile drifted away, and finally he just sort of checked out and slumped down in his wheelchair.

While Owen and Roman were feeding the giraffes (they really were, and it’s much safer than feeding the lions) I was preoccupied with the Little Man. By the time we got back home, Errol was fading, and although he was completely exhausted, he lay in his crib moaning and wouldn’t fall asleep.

We knew something was terribly wrong, so Cary bundled Errol up and rushed him off to visit his amazing pediatrician. Errol was whisked into a room, and Dr. Hunsinger took his vitals, examined him, and told Cary that Errol was running out of oxygen. She made a call to the hospital and asked them if we could see a cardiologist. She was told the clinic was closed and that we would have to go back to the emergency room (where the week before, residents had been sent us home with an incorrect flu diagnosis).

But we didn’t really have any options, so Cary rushed Errol to the ER and I dropped Owen (poor resilient boy has learned to live with a certain amount of uncertainty) with his grandparents and raced over to join Errol and Cary. Again, we saw resident after resident who asked us the same basic questions and then diagnosed the flu, “It’s really going around!”

We asked to see a cardiologist, and finally one materialized. I told the cardiologist that Errol’s pediatrician thought he might have a pulmonary embolism or some kind of infection. “That’s impossible!” she replied.

Without giving Errol a physical exam the cardiologist informed us (as we had been told the week before) that Errol had the flu.

“You are saying that his heart is fine?” I asked. “That there is nothing cardiac going on with Errol?”

“That’s right.” She said. “His heart's fine. He just has the flu. Let’s keep him here overnight and watch him.”

“What are you going to watch him for?” Cary asked.

“Well,” the doctor said, “We just want to watch his sats and take his vitals to make sure he’s ok.”

“Errol is sick!” His mother proclaimed, “He doesn’t need to be kept up all night by nurses taking his vitals, and alarms going off.”

“Well, we can just turn his alarms off.” the doctor said.

“But, if you turn off the alarms, you won’t be watching him! I thought that was the whole reason you were keeping him here.”

“Well,” The Cardiologist stammered, “If you are just worried about losing some sleep-“

Cary is one of the kindest, sweetest people in the world. She is not worried about losing sleep. For four months she spent almost every single sleepless night in the hospital to keep her child alive. Suffering through needless alarms, beeps, buzzes, dropped breakfast trays, midnight blood draws, thoughtless nurses who want to chat at three a.m.! She has suffered years of insomnia from worrying about Errol. She gets up at 1:30 every Saturday morning so she can bake until six a.m. when she goes to the farmer’s market to sells baked goods so she can pay off our child’s enormous medical bills. I won’t quote what Cary said to our ex-doctor, but suffice to say, we left the emergency room and headed home to “get some sleep.”

The next evening, Errol was doing worse, and although it was long after office hours, Dr. Hunsinger told us to come to her office. When we got there, Dr. Hunsinger was beside herself. She knew that Errol didn’t have the flu. She was sure that Errol’s problem was with his heart. She diagnosed endocarditis and was furious that the cardiologists at Baptist Hospital were not doing anything for Errol. But what options did we have?

By now it was seven at night and her office was long closed. She feared for Errol’s health. There was one last resort. An old friend and medical school classmate happens to be a world-class pediatric cardiologist at Duke Hospital. She picked up the phone. As she described Errol’s situation, he grew concerned. Could Cary and Errol come to his clinic first thing in the morning?

The next morning, the brilliant and compassionate Dr. Ronald J. Kanter, saw Errol, ran a few test Baptist hadn’t run, and quickly diagnosed endocarditis. (If you saw Errol and read the symptoms of endocarditis you would too!) We were admitted to Duke Hospital and began the six-week regimen of antibiotics we are now faithfully administering at home.

Errol is getting better each day and we have switched his cardiac care to Duke Hospital.

Seizure

2009-11-05T23:35:00.004-05:00

Errol is home now and feeling grand. But it's been a long climb out of the sickness that sent us to Duke.

Here's how it happened...

Last Monday I got a call at work to come pick Errol up from school. He had passed out. As soon as I laid eyes on Errol I knew that something was very wrong. He was white as a sheet, listless, and staring blankly into space. There was nothing of the smiling, cooing, laughing Errol. I put Errol right into the car and headed straight to Dr. Hunsinger’s office. As I drove, Errol slumped further over into his car seat. His eyes were open, but they were blank and unresponsive.

I tried to rouse Errol by opening the car windows and letting the cold air blow on him. But as the air blew across his blonde hair, Errol just sat hunched over in his seat. Barely there.

Out on the interstate, I was driving 85 miles an hour trying to get to the doctor before it was too late. I kept looking over my shoulder. The less life Errol showed, the faster I drove. I watched Errol like a hawk. Errol hunched further over.

The open windows weren’t rousing Errol, so I honked the horn to try to startle him awake. Then I turned around and yelled in my meanest teacher voice,

“Errol!”

“Errol. Wake up!”

He didn’t budge.

I looked over my shoulder for signs of life. I swerved between the lanes. Errol remained in his slump. I panicked. I thought about turning around and driving to the emergency room. My mind and my heart were racing. I didn’t know what to do and I couldn't tell if, down under his big coat, he was even breathing.

I screeched to a stop on the shoulder and ran around the car to check on Errol. I tapped him on the cheek and then felt for his pulse. It was there! I breathed. I looked down at Errol. I hurried back behind the wheel and pushed on.

As we burst through the door of the doctor’s office, the nurses took one look at Errol and rushed us straight back to Dr. Hunsinger.

Dr. Hunsinger quickly examined Errol and asked lots of questions. As I described the details of Errol’s condition, the doctor quickly diagnosed a seizure.

The seizure, which would leave Errol with no permanent damage, was caused, we soon deduced, by Errol's meds (better and more expensive meds that the insurance would not cover would not have caused seizures, but the cheap ones they gave us caused his seizure!)

As we finished the exam, Errol began to regain his color and even let out an uh-oh or two. He was feeling better and the news was, all things considered, better than we had feared. We headed for home.

Tragedy had been averted. I had thought I was going to lose my boy, but now he was going to be just fine. Or so it seemed…