Skip to comments.Letting Dylan Go
Posted on 12/21/2005 8:04:28 AM PST by Lesforlife
Article Last Updated: 12/19/2005 08:18 AM
a denver post special report
Letting go: Dylan's last days
Two parents face an agonizing test of faith and love for their son
By Kevin Simpson Denver Post Staff Writer DenverPost.com
Dave Walborn lifted his son upright, all 32 pounds of him, slipped one hand behind his lolling head and gazed into the open but vacant blue eyes. He spoke out loud the words that would move him and the boy's mother, Kerri Bruning, one step closer to an excruciating decision.
"Dylan, it's OK if you want to go," he said. "I don't want you hanging on for me."
He heard no response, felt no mystical vibe. But with the sound of his own voice, Dave opened the door to a possibility:
Maybe it was time to let go.
Some combination of Dylan's strength and his parents' devotion had carried the three of them for nearly five years. An in-utero stroke brought Dylan into the world with severe cerebral palsy, the overarching term for a condition that left him virtually blind, deaf, immobile and unable to communicate or perform any voluntary function.
The neurological damage bounced him between expressions of pain or calm - but nothing his relatives, doctors or nurses could decipher as joy. He cried silent tears as seizures rattled him. He spoke only in heartbreaking body language: a furrowed brow, rigid muscles, a discolored tongue and heaving breaths that whistled and gurgled from his tracheotomy tube.
And still, he defied expectations.
Dave, now 32, and Kerri, 35, had heard predictions that he would not see his first birthday. But Dylan saw that one and three more. And though these anniversaries brought no corresponding developmental milestones - no first steps, no first words, no first anything - the parents built two loving homes for their son.
They never married. Although their engagement weeks after Dylan's birth reflected good intentions, their short romance dissolved in the difficulty of caring for a severely disabled child and they called it off. Yet they remained committed to their son, mutually respectful and supportive as caregivers.
Even as they moved apart, Dylan's life bound them.
But by the middle of his fifth year last summer, the boy's seizures had intensified. Although doctors countered by increasing his medication, the spasms repeatedly burst through the chemical buffer.
Sometimes his body would shake - from short bursts every few seconds to frightening episodes of as long as 40 minutes - three or four times a day. Energy would seem to radiate from his very core, Kerri noted, and "flop him like a rag doll." Other times, he would appear to simply shiver uncontrollably.
Dave and Kerri could try to blunt the escalating seizures with drugs that would render their son effectively comatose. Or they could withdraw life support - in Dylan's case, the nourishment delivered through a gastrointestinal tube implanted during his first month - and watch their son die.
In some ways, they faced a decision that isolated them. But in another sense, they were hardly alone.
The public battle between the parents and husband of Terri Schiavo thrust such agonizing decisions into the headlines last spring, but similar, uncontested end-of-life choices face thousands of Americans every day.
And though such cases aren't statistically tracked, national experts on child hospice and palliative care point to a million kids in the United States who live with a serious chronic or life- threatening condition.
"There are huge numbers of children and families that experience these kinds of life-and-death situations," says Ann Armstrong-Dailey, founding director and chief executive of Children's Hospice International. "It's absolutely not an unusual case."
In Colorado, more than 4,000 families have a child with a life-limiting illness, according to Medicaid statistics - and any of them could ultimately face a choice between prolonging life and ending it.
The chairman of the ethics committee at Denver's Children's Hospital, pediatrician Stefan Mokrohisky, estimates he has participated in hundreds of cases where nutrition or other life-sustaining measures were ceased over the past 20 years.
Now, it was Dave and Kerri's - and Dylan's - turn.
Dave and Kerri seek the guidance of faith and doctors who know their son.
As Dylan's seizures worsened, the two parents - for nearly five years separate but equal partners in Dylan's care - talked on the phone. Then Dave walked over to Kerri's - only about 200 yards separate their Broomfield apartments - and they talked some more.
Kerri, a restaurant worker and massage therapist, had accepted the possibility of withdrawing life support months ago, as Dylan's bad days began to outnumber his good ones. But Dave, a carpenter, had reached his turning point just weeks earlier, as he sat in his recliner watching the story of a dying child undergoing a last-ditch procedure on the TV medical drama "House."
When the young girl on television agreed to a potentially futile measure for her mother's sake, the scene hit home. Was he being selfish in clinging to his son? Would Dylan choose death over his deteriorating life?
At that point, Dave picked up Dylan and spoke the words that tipped him toward a decision.
He and Kerri asked for a meeting.
A little past 8 a.m. Oct. 18, Pastor Buddy Conn came calling at Kerri's apartment.
Together, they prayed.
Pastor Buddy, on the staff of a large non-denominational congregation, knew Kerri and Dave from previous hospital visits in which he'd prayed with them and Dylan. This time, he asked the Lord to give the parents clear understanding of what they were supposed to do later that day; he did not presume to know the answer.
He prayed for Dylan's healing - whether on earth or in heaven.
"Mom just wanted to know, 'Boy, have I fought the good fight, have I finished the race?"' the pastor says. "She felt she had. She's a believer, so she leans on God for her day-to-day guidance. I believe God gave her an answer in the afternoon."
That's when Kerri and Dave drove to Children's Hospital, where they met Dylan's neurologist, his pediatrician and two members of the institution's ethics committee.
Dylan's case was one of about five each year that come to the committee for consultation on removing nutrition. The ethics consult team considers 30 to 40 total cases annually, although bioethicist Mokrohisky notes that often - more than half the time - doctors allow death to occur without such consultation.
Dylan's doctors covered all the bases.
In a small examination room, the parents laid out their wish to end their son's suffering. The two ethics consultants, a doctor and a nurse, asked if they'd explored all known medical avenues. The neurologist explained the futility of treatment. The pediatrician described Dave and Kerri's commitment to their son as heroic.
Satisfied, the ethics committee members concurred that the hospital could support removal of life support - in this case food - as an ethical option.
The doctors left Kerri and Dave alone in the room.
They talked about a date and agreed to stop Dylan's feedings on the following Sunday. Then Dave made a suggestion: On Saturday, before medication rendered Dylan entirely unresponsive, they could gather friends and relatives to celebrate the ways that their son had touched so many lives.
* * *
The visitors come in waves - friends, cousins, aunts and uncles - to the suburban split-level house and eventually gravitate to a rocking chair in the far corner of the living room.
Dylan Walborn, resting in the arms of his grandma, Vicki Saiz, stares blankly at guests in what appears to be a state of semi-consciousness.
At intervals, the grinding hum of a suction pump clears his airway. A ceiling fan turns above, and the air currents flap the chain switch rhythmically against its hollow metal housing.
Tock, tock, tock ...
Grandma Vicki smiles.
In hosting this sad celebration at her home with husband, Don, she revels in the opportunity to hold her grandson, to share him with others, to speak to him as if he is an active participant in the conversation - and to snap a few more of the thousands of digital photos that chronicle Dylan's life. She has mastered the art of holding her camera at arm's length and snapping a perfectly framed picture of them together.
Vicki wishes her grandson could have run around and made a mess of her house. But Dylan has left his mark on her in subtle ways. He has made her more patient, more accommodating, more appreciative of life.
"I've been praying since he was born for a miracle," Vicki says. "I never got that miracle ... but then, maybe I did. He's brought me a lot of joy."
She says she has known since her grandson was 3½ that he would not live past age 5. God told her, she says. Not in a vision, not in a booming voice.
Suddenly one day, she just knew.
"Even though it's hard for us to let go, I don't want him to suffer any longer," she says. "I know because he's crying that he's hurting. It's not fair to keep him here."
Dave arrives at the house with his mother, Patricia Walborn, who just flew in from Wisconsin. She heads for the rocker that has become the focal point of the gathering, takes a seat and welcomes Dylan onto her lap.
"It's hard being so far away," she sighs.
Although she and Dave's father live in a small town north of Madison and haven't been able to visit often, it doesn't take her long to notice a difference in her grandson.
"He doesn't have the strength he had before," she observes.
In the living room, Don Saiz - Vicki's husband and Kerri's stepdad - removes a framed piece from the wall above the couch. It's a poem he wrote about Dylan, celebrating the little boy's wondrous effect on the family.
Now he's working on another piece - "kind of the farewell one" - tentatively titled "Little Big Blue Eyes."
"He may not be with us much longer, and making that part of the poem brings me to a halt," says Don, a bus driver for RTD. "I can't concentrate. It'll be awhile before I get it together."
Friends, relatives and even a group of Dylan's teachers and therapists from the school he attended all file through, sharing fond memories.
Some of Dave's buddies, preparing to leave, wander over to the rocking chair to say goodbye to Dylan. Some kiss his head gently.
Kevin Smeiles, a 40-year-old bear of a man, holds the boy's tiny hand and looks at him for a long time. Finally, he places the hand, limp, by Dylan's side. He turns and hugs Kerri, then hugs Dave, releases the embrace and immediately turns away, tears in his eyes.
"On Sunday," says Kerri, "we put him in God's hands. It's God's day."
The celebration extends into Saturday evening before Kerri and Dylan return, exhausted, to Kerri's apartment.
As Dylan's journey begins, the ranks of his allies and helpers swell.
In the galley kitchen of the two- bedroom flat, home nurse Vicki Bauer puts a 1-milligram tablet of Clonazepam into a red cylinder, then adds a single 100-milligram tablet of Topamax.
She twists the plastic pill crusher until they become a fine powder, dissolves the mixture into a vial containing 50 cc of water, then prepares another vial with 100 cc of water to wash the anti-seizure combination through the feeding tube.
Kneeling in the living room, she attaches the first vial to Dylan's gastrointestinal tube and watches it drain, then repeats the process with the second vial.
In Dylan's bedroom, the nurse now screws a small electric pump onto a metal pole at the foot of the boy's bed, fills a clear plastic bag with two cans of Nutren Jr., a concentrated nutritional formula, and 100 cc of water. The bag dangles from a hook at the top of the pole.
She runs the mixture through a long tube to force out the air, then snakes the tube through the pump and turns it on. Red digital numbers flash on the control panel. Dosage: 60 cc per hour.
It's a routine she has performed at least four times a week for the past seven months as Dylan's primary home nurse. And she'll continue to administer his medicine in the days ahead.
But tonight is the last feeding.
A little before 9 p.m., Kerri settles Dylan into her lap.
"Do you know how much I love you?" she whispers to her son. "I don't think you do."
The medication has kicked in, and his eyelids droop shut, but there is something his mother must do. She slides on her reading glasses and begins to read a thin, illustrated volume called, "Piggie Pie!"
"Are you ready?" she asks.
Other times, when the medication failed to knock him out, Dylan's eyes would grow large, perhaps because Kerri changed her tone and inflection for each character. Tonight, he does not stir.
Still, Kerri reads each page - cackling as the witch in search of "eight plump piggies for piggie pie," deepening her pitch for Old MacDonald the farmer, injecting a sly accent as the big, bad wolf enters the tale. No shortcuts.
The story ends the same as it always does, with the same faintly dark fairy-tale humor, and she closes the book. It's Dylan's bedtime, a ritual of the medical, practical and spiritual to see him through the night.
Kerri lays him on his twin bed and stretches a long blue tube from an electric misting machine to his tracheotomy tube, so traces of moisture will ease his breathing in the dry air. Then, for the last time, she plugs his white feeding line into his g-tube.
For the next 10 hours, the computer- controlled device the nurse prepared earlier will drip nourishment through the white conduit directly into Dylan's stomach. Once the machine shuts off automatically at 7 a.m., he will receive only water and medication.
The process has begun.
Kerri covers Dylan with a blue blanket, then drapes a knitted afghan on top.
"Are you ready to say your prayers?" she says to the sleeping boy.
She picks up an angel doll from his bedside and activates a tiny electronic voice recording inside.
Angel of God, my guardian dear,
To whom God's love commits me here,
After this day be at my side,
To light, to guard, to hold, to guide.
Kerri places the angel doll at the head of Dylan's bed.
"Amen," she says.
* * *
By Monday morning, Dylan has a new buddy.
Her name, derived from her regal bearing, is Princess Dragon Lily - a moniker that later will be shortened to simply Lily. She is a weeks-old Shar-pei puppy, all wrinkles and attitude, that one of Kerri's girlfriends found roaming a grocery-store parking lot a day earlier.
As Dylan lies sleeping in his beanbag chair, Lily climbs into his lap, curls up and closes her eyes for a nap. Like many things that will happen within these walls, this unremarkable development - a lost dog taken in - assumes almost mystical overtones.
Lily must be here for a reason.
Dave also has taken up temporary residence in Kerri's apartment, where he will spend the rest of Dylan's days and nights. Both parents have left their jobs to keep vigil.
Dave takes his son's hand, touches the tip of every finger. He leans down and kisses Dylan's head. Now, for just a little while, he and Kerri must leave.
"Bye-bye, pumpkin pie," Kerri says. "I love you very much. Mommy and Daddy are going to find you a beautiful place."
It's nearly noon on an autumn day. Only a faint haze taints a cloudless sky. Dave and Kerri climb into her Chevy Blazer and wind up Turkey Creek Canyon, turning off at the Tinytown exit.
Not far off the highway, they find the entrance to Mount Lindo Memorial Park and begin the climb up gravel switchbacks, passing stands of aspen barely clinging to dull yellow leaves and scrub oak already surrendered to winter. They reach an empty parking lot at the top of the climb and begin a stroll through the grounds.
Up here, the sky is brilliant. Tree-covered peaks nearby and snowcapped Mount Evans in the distance stand out in sharp relief. Under a warm sun and occasional breeze, Dave and Kerri walk in silence, each moving alone through the trails that wind among rustic stone-and-wood structures that hold cremated remains and family memorial sites often marked by engraved stone benches.
"Look at how the sunshine hits here, Dave," Kerri says, facing east from an overlook that reveals the city shimmering beneath a layer of dark haze. "This is nice."
Dave agrees - in fact, he declares that there isn't a bad spot on the whole mountaintop. Although they had originally envisioned Dylan's final resting place somewhere near water, they are taken with this landscape.
They pass a large cross marking a memorial site and Kerri stops, suddenly reminded how, when Dylan would sometimes stretch his arms and his legs would go straight and stiff, he looked like Jesus on the cross. She would reposition him, uncomfortable with the image but, in another sense, somehow comforted.
"I think he's been telling me that he's God's child," she says, "and he's being watched after."
There have been other odd hints. Kerri's much-beloved paternal grandmother died a year ago from a stroke - the same affliction that touched Dylan in utero - and many times since then, when Kerri has reached for her cellphone, its directory has for no apparent reason flashed a single name on the screen: VIOLA WELLS.
A sign, Kerri suggests, that her grandmother is waiting to welcome Dylan.
As for a place for their son's physical remains, Dave and Kerri need look no further.
"It's beautiful up here," she says. "He would really like it."
* * *
Michelle Cox arrives Tuesday with a gentle demeanor, a kind face and an affinity for dogs that will serve her well here.
She's a social worker with the Butterfly Program, the support service for seriously ill children offered jointly by The Children's Hospital and Porter Hospice of Centura Health. Such programs have been gathering momentum nationwide, and next spring Colorado stands to be among the first states to offer such counseling and respite care through Medicaid, starting from a child's diagnosis with a life-threatening condition.
Although these services arrive late in the process for Dylan's family, which has relied on Medicaid for most of his life, Cox still has plenty to do: augment the medical and nursing services already in place, offer guidance for burial arrangements, connections to counseling and advice on how to allow for a peaceful passing in home surroundings.
Sometimes, she'll just listen.
Cox, who has a basset hound at home, instantly establishes rapport with Kerri's dog Tyra, a whip-smart chocolate Lab who provides welcome diversion and comic relief, and the newcomer Lily. Then she turns her attention to the parents.
They talk about arranging a prescription for morphine, in anticipation of discomfort Dylan might feel the next day, which will be his fourth without food. Kerri wonders if they could also get a prescription for Valium.
"We've got some," Dave reminds her.
"No," Kerri says. "For us."
Cox understands well the anxiety that grips parents of a dying child. Carefully, she searches for a handle on the hopes and fears that swirl now in the small apartment. On this first visit, she hears tentative expressions.
"I just try to feel that every day is normal, that when he takes that last breath, that's how it's supposed to be," Kerri says. "He needs to be free and not suffer."
"I'm fighting myself every day if I'm doing the right thing," he says. "I ask myself, then I answer, then I ask again. It's the same thing every two minutes. I know we're doing the right thing. But I still ask ..."
Rarely do they acknowledge the angst of their decision. In the days ahead, Dave will embrace the distraction of movies, books and video games in the apartment and find simple relief just hanging out in a buddy's garage. Kerri will stoically plow through volumes of crosswords at home, but vent emotions and self-doubts on brief visits to her boyfriend.
Among company, both keep raw feelings below the surface.
Kerri often talks with clinical detachment about the process unfolding. Emotional moments catch in her throat, but she swallows them.
"Now, she has this wall built up," explains Lisa Adducci, her closest friend. "She might seem really detached about the decision, but deep down it bugs her. That's just how she deals with it. If I was an outsider, being there now, I'd think, 'Wow, she doesn't break down.' But she has. She just puts up that wall that she's really tough when people are around."
Later, Cox goes over care details with Nurse Vicki. She shows her a form titled "Death at Home Procedure" that will need to be faxed to the local coroner by 9 a.m. the day after Dylan dies. She leaves a pamphlet that explains the signs and symptoms that precede the death of a child.
Kerri won't look at it.
Kerri knows every detail of Dylan's body but has to guess at what he feels.
Dylan reclines on the beanbag chair in the living room while Kerri picks out the clothes he'll wear after his morning bath.
"It's warm," she says to him. "Do you want to wear shorts today?"
The bath-time ritual usually seems to relax Dylan, except for the moments immediately after he's removed from the warm water and his body trembles slightly as he's swaddled in towels.
Now, Kerri cradles his head, careful not to let the water crest near his trach or his feeding tube. She washes him gently with a cloth.
"Leave the pains and wash them down the drain," she says in a soft sing-song.
With his naked body stretched before her, she notices a subtle change. After just three days without food, his lower ribs protrude slightly. At one point, he weighed 32 pounds. They won't weigh him again.
Such a small boy. So many problems.
At nearly 4 months old, while the adult daughter of a close friend looked after him, Dylan stopped breathing because of fluid buildup in his lungs. The babysitter performed CPR, saving his life, and Dylan was rushed to the hospital, where doctors installed the tracheotomy tube to open an airway.
At about 1 year of age, Dylan came down with pneumonia and once again went into the hospital. When Dylan stopped breathing, medical staff put him on a ventilator - a measure that moved his parents to put advance directives and a do-not-resuscitate order into writing. Still, Dave and Kerri were uncertain.
"If they change their minds, they will let us know," reads a handwritten notation in Dylan's medical records.
It seemed only a matter of time before the boy's body gave out.
"We knew Dylan would not be with us forever," Kerri says. "But back then he didn't have seizures all day. He had a comfortable life. It seemed like he didn't mind being here. You could see in his eyes that he had consciousness and reaction to what was going on around him."
To Dave and Kerri and other family members, Dylan seemed responsive to familiar voices and occasionally sensitive to bright light and color in certain video movies. He would stiffen his legs in apparent displeasure during a diaper change.
Exactly what he saw or heard, if anything, had always been a mystery.
At 2, surgeons removed his salivary glands to reduce secretions that might block his airway. He underwent one operation to fix his eardrum and three more to install and adjust drainage tubes in his ears. At 3, he needed surgery to realign both hips and spent six weeks in a full body cast.
His head failed to grow with the rest of his body, and it remains about the size of a 7-month-old's. When Kerri looks at him she sees ...
The eyes, deep and blue. The hair, thick and sandy, with a rakish wave - the kind of hair she loves to run her fingers through. And the eyelashes, long and dark, the envy of all her friends.
Now Dylan lies on the floor, wrapped in towels and a hooded, terry-cloth robe. Kerri slathers lotion on her hands and begins to massage his legs. She touches each tiny toe, works her way up to his belly and chest, strokes his arms and shoulders. This has been a time of connection for mother and child, ever since nurses in the neonatal intensive-care unit taught Kerri infant massage when Dylan was 2 weeks old.
"His little body speaks to me," she says.
Today, it tells her that he's tired.
Kerri presses her nose against Dylan's. His mouth reflexively closes into something like a pucker. The nose-touch is her son's kissing button, and she presses her lips gently against his. Again. And again.
"I always feel like he's kissing me," she says. "He may not be actually doing it, but ..."
Her voice weakens and rises as tears well up. She fights them back, rubs his arms. He sighs. She runs her fingers through his hair, spreads lotion on his face, changes the neck strap that secures his trach, swabs his ears.
Then Kerri slips a T-shirt on her son and pulls a pair of shorts up over his diaper. The waistband swallows him - another indication of Dylan's diminishing presence. She removes the shorts and finds a smaller pair.
Dressed, the little boy again reclines in the beanbag chair, covered from the waist down by a blanket. Lily climbs into his lap, sprawls her own scrawny body across his legs and closes her eyes.
Kerri can see subtle signs of discomfort, even through the medication. Her finger traces the ridge of Dylan's furrowed brow. His lip quivers in what she calls his best Elvis impersonation.
"I know it's the best thing, but you see him getting skinny ..." she begins. "It just hurts. I always wanted the best for our baby. I just want him to be happy. And I know he'll be happy when he's somewhere else."
Who is Dylan?
As their vigil continues, Dylan's family ponders where they end and he begins.
The next morning, Kerri sits Dylan on her lap and goes about the daily routine, angling a toothbrush into his mouth.
"I thought he was going," she says.
The calm in her voice belies the tension of the night before, when her son's breathing grew shallow and both parents felt Dylan slipping away. Nurse Vicki even began a round of emergency calls on her cellphone.
But Dylan rallied.
"Then his eyes were wide open this morning," says Dave, who caught fitful sleep on the living room couch. "It was kind of spooky."
They began the morphine last night - less than half of 1 cubic centimeter, pulled carefully into a syringe and then mixed with 50 cc of water, along with some Motrin to soothe a fever that seems to come and go. Now, they repeat the pain medication every four hours, sometimes more frequently if Dylan seems distressed.
"I tell him every time I lay with him, he can fly with the angels, and they're waiting," Kerri says. "He doesn't have to hold on."
But hold on he does, and others hold on to him through hours marked by a succession of video movies playing on Kerri's TV. In this fifth day without nutrition, in the wake of the first indication that the ordeal may be heading toward a speedy end, Dylan spends his time in the arms of Dave or Kerri, or Dave's brother Jonathan, visiting from Texas, or Grandma Vicki, or one of several others.
They run fingers through his hair, stroke his arm, kiss his head. Dave and Kerri had been told the process could take anywhere from two days to two weeks, possibly longer, but that there are no accurate means to predict these things.
Dylan opens his eyes - sometimes, it seems, to check out each new visitor. But then they quickly close and he slips back into limp repose.
One of Grandma Vicki's "memory books" circulates among the guests, this one the first of three completed editions. She's working on a fourth - each of them artfully and cleverly conceived by a woman whose scrapbooking abilities and paparazzi-like persistence with her camera shine through these volumes.
The photos begin shortly after Dylan's birth, and Vicki has recorded all the vitals: Born at 11:37 a.m. on Dec. 3, 2000, weighing 5 pounds, 11 ounces, 19 inches long. She has pictures of his first bath, his first Christmas, as well as some less joyous milestones.
First breathing tube.
First feeding tube.
"Here are some more pictures of me before I had to get my breathing tube. I was 4 mo. old when I had to get it," reads one of Vicki's notations, giving Dylan the voice he would never have on his own.
On the pages of the memory book, he speaks.
"I sure like bath time!"
"Look at these big beautiful eyes!!!"
"Here I am with Jason, my physical therapist. He sure is giving me a workout. This is to keep me limber and not let my bones get stiff! Tough stuff!!!"
Grandpa Don Saiz pauses to reflect on a still and silent boy's impact and peel back the layers of a complex question: Who is Dylan?
"He taught me that love is special, because I found it with a very special boy, a boy with special needs," he says. "That makes it so different. You adapt yourself to do things with him. He can't swing or run or catch a ball. But that all becomes irrelevant. You find the means to have a day of enjoyment with him."
And oh, what a day they had at George town Lake, with Don casting lines for both of them off the dock and hauling in 10 fish. And what about the time last year, when he and Vicki took Dylan to revel in the fall colors on Mount Evans?
And there's the time Don spent reading to the grandson on his lap - or just snoozing together in a chair.
Without a word, he marvels, Dylan could just suck you right in, dazzle you with those big blue eyes and some indescribable power that reached out and connected with anyone who took the time to know him.
"He can project so much without being physical or vocal," says Don. "There's a love that grows. It's hard to define or pinpoint. But it's developed as I've known him."
Vicky Bostwick - the first Nurse Vicky, who cared for Dylan from 5 months to 4 years - describes him as one of the most severely brain- damaged kids she has seen in 26 years as a pediatric nurse. How did she decipher the thoughts and feelings of the child behind the unblinking blue eyes?
"It was your best guess," Bostwick says. "That's a terrible way to put it, but I worked full time for four years, and I just took a guess."
Picking him up seemed to calm him down. Certain voices - Mom, Dad, Grandma - seemed to strike a chord with him. Perhaps even involuntary movements formed a crude, or perhaps just imaginary, form of communication.
"With these seizures becoming so bad and constant, maybe this was Dylan's way of saying, 'It's time; I'm ready,"' Bostwick says. "We don't know. But with the seizures, if you'd see his body contort and tweak, it looked painful. Then you're thinking, 'If this is going on, is he in pain all the time?"'
At the Bal Swan Children's Center, a private preschool that mixes kids with disabilities with typical preschoolers, Tammy Nicholson welcomed him into her classroom.
Dylan attended the school one day a week and, accompanied by his nurse, got to ride a school bus. He lay among building blocks, painted a duck for Dave, made a card for Kerri - with help, of course. Classmates would introduce themselves - "Hi, Dylan, my name is ..." - and then activate an electronic toy for him.
He was bounced on a trampoline, worked out in the swimming pool, introduced to a variety of tactile experiences - Play-Doh, shaving cream, homemade "goop."
"He'd get kind of teary-eyed, and his mouth would quiver if there was something he didn't like touching or felt uncomfortable with," says Nicholson. "We saw that improve from when he started out."
"Improvement" rested on interpretation of Dylan's reactions to stimuli - who could ever really know what he saw, heard, felt or thought? Most of all, school provided an immersion in normalcy, a mainstream experience that, Nicholson hopes, somehow improved his quality of life.
To the other children, Dylan was simply a classmate, a once-a-week piece of their school experience.
"On the days he wasn't in school, I'd ask the class, 'Who's not here?"' recalls Nicholson. "And the kids would immediately say, 'Dylan!' He's just a sweet little boy. He just enriched the whole classroom."
As the days pass, certainty retreats and returns, plaguing Dylan's parents.
In Kerri's small apartment, the scene has become surreal to both parents. It sometimes seems that nothing is happening here, except that they have picked out a niche for their son's ashes on a distant mountaintop and they no longer go to work each day.
They reflect on a life that has been defined mostly by what others have brought to the relationship. Dylan's voice echoes only in the conversation balloons of Grandma Vicki's memory books, or in what others speak aloud for him. His body language consists of reflexive movements and the gestures others might make with his tiny limbs.
A wave goodbye.
"His whole life has been a puppet show - it's been what we wanted it to be," Kerri says. "If I talked to him and he moved his hand, I'd remark how he must have liked that, like it seemed he understood what was going on. I don't know. Maybe some sounds captivated him. We don't know what he could hear. His life has been ours, like I would want my little boy to be."
She changes his diaper, washes his face, massages his limbs. When she picks him up and rests his head in the crook of her neck, his arms fall across her shoulders.
Something like a hug.
With each passing day, the dying process seems more real. For all the questioning that has dogged him, Dave finds himself feeling more certain about the decision.
"It's to the point where I can see it coming," he says. "There's no changing our mind now. It's the right thing to do."
"Still," offers Kerri, "it's like this little evil person sitting in the back of my mind. Sometimes it feels like those questions are all that are in my mind. Am I doing the right thing? Is there more I could have done? When I ask, I get the same answers. There's no technology to make him whole. Things were going to get much worse. Where would we be in another week?"
One evening, as Dylan's grandparents prepare to leave, Grandma Vicki offers him a quick farewell.
"See you tomorrow, Dylan," she says.
The words instantly grate on Kerri. She has been softly assuring Dylan that it's OK to let go and has asked her mother to stop giving Dylan a reason to stay another day.
"Don't you respect my wishes?" she asks.
It is a small scene, produced by seven days of grinding uncertainty and too little sleep. No voices are raised, but there's tension as Kerri and her mom part company in a misunderstanding over metaphysics: What keeps body and soul together?
"People hold on for the weirdest things," Kerri says.
Though Dave and Kerri never married, Dylan's care was always a joint effort.
With a father who doubled as a Baptist preacher and part-time carpenter, Dave Walborn and his three siblings went to church every Wednesday night and twice on Sundays growing up on the shores of Lake Erie in the town of Oregon, Ohio.
Dave, the hyperactive youngest child, expressed a rebellious streak, struggled in school and, after graduation, made little progress on a business degree at Ohio State before turning to carpentry. Through his 20s, Dave worked with a restoration company in Ohio before heading west to another Oregon - he landed in Portland - and switching his focus to custom homes.
When the winter rains hit the Pacific Northwest, he tended bar and waited tables. And he met Kerri Bruning.
Kerri had grown up in the Denver area during what she regards as a forgettable childhood. Her father died in a motorcycle accident when she was 4, and her mother had remarried and divorced by the time she turned 14. After graduation from Rangeview High School in Aurora, she attended cosmetology school and then landed a job with a national restaurant chain.
She hit the road to help open new stores in Iowa and Maryland and then, in 1999, wound up in Portland.
She and Dave dated for a while, and when Kerri jumped at a job opportunity back in Denver, the plan called for Dave to follow a few months later. He'd been pursuing his musical interest in percussion, had discovered "a gift" for African rhythms and had nearly saved enough money to study under one of the masters.
A week after she arrived in Denver, Kerri called Dave back in Portland and told him she was pregnant. Dave expedited his move to Colorado.
He found construction work, and the two of them set up house and awaited their child's arrival. They couldn't agree on whether to learn the baby's gender ahead of time.
After one prenatal visit, Kerri's doctor scribbled the news on a slip of paper, sealed it in an envelope. They got as far as the parking lot before they threw down rock-paper-scissors. Kerri won and instantly tore open the envelope.
Kerri recalls during her pregnancy how Dave, the aspiring percussionist, would drum rhythms on her belly. They talked about names: Both liked Dylan, and were basically searching for a middle name, something that had a "y" sound to it.
While watching an Ohio State football game on TV, Dave spotted a player whose name seemed the perfect complement, especially considering how Kerri often remarked how he was "riling" inside her. And so Dylan Riley Walborn entered the world at Swedish Medical Center.
They knew from the first frantic minutes after a difficult delivery - the ordeal left Dylan's face bruised and nurses immediately rushed him to intensive care when he failed to breathe on his own - that the birth had dealt them extraordinary circumstances.
And those stretched beyond Dylan's physical appearance to his gradually emerging neurological problems.
"He basically could do absolutely nothing," says Brian Greffe, medical director of the Butterfly Program and one of the doctors familiar with Dylan's case.
"Any baby that has had a stroke has a more fragile physiologic state," adds ethicist and pediatrician Mokrohisky, "so they're presenting through the very difficult birth process with two strikes against them."
Dave, pointed by the moral compass of his church upbringing, asked Kerri to marry him at Christmastime, even as Dylan's difficulties began to emerge during a month-long hospital stay. Kerri, also wanting to do the right thing, accepted.
But gradually, the romance soured. They scrapped the engagement.
Despite their split, they remained close - only because it seemed the best thing for Dylan. Even after they moved to separate residences, they never needed a custody arrangement, child support agreement or lawyers.
"I was fighting so hard for her and for him," says Dave. "I didn't get her, but there was still him."
When Kerri moved from one suburb to another to be closer to her mother and stepdad, Dave found a place nearby so they could still easily share time with their son. Doctor visits remained a joint effort. Although both have become involved with other people, they never lost respect for each other as parents.
"She's the best mom that boy could have," says Dave. "It was just something we had to deal with. He was No. 1 to both of us."
"I'm blessed to have had Dylan with Dave," Kerri says. "There are men who run out on women with normal children, let alone one with 24-hour needs. We weren't meant to be together, but Dylan was meant to be with both of us."
At first, Dylan's arrival triggered pain and questioning.
Depression washed over Kerri in the tiring, frustrating first months before she eventually found renewed strength - sometimes just from watching Dave and seeing how he cared for Dylan; sometimes from the growing sense that there was a greater good forming somewhere on the horizon; sometimes from her amalgam of faith and spirituality.
Dave, despite a staunch religious grounding, lashed out at a God that would create a child so hopelessly disabled.
But both came to terms with their son's condition, loved him and cared for him while adapting to what trauma survivors often call "the new normal."
Kerri picked up the infant massage techniques from the nurses in the NICU and later became certified through a massage therapy course. Both she and Dave drove to the state Capitol - with Dylan in tow - to testify on home-care issues.
Friends found their devotion remarkable.
"I couldn't fathom what Dave and Kerri have been through since Dylan was born," says Kevin Smeiles, who met them through mutual friends five years ago. "Dave would give you the shirt off his back, and Kerri's the same way. Their love for their son is awesome."
Dylan's parents moved slowly and separately toward acceptance of his deteriorating condition. They'd already signed a do-not-resuscitate order and had some advance directives in place to avoid extreme lifesaving measures.
But those decisions felt different from this one.
"We never thought we'd have to say, 'Yes, let's discontinue feeding our son,"' Kerri says. "I'd never say I'm comfortable with this. But when did I realize I wanted his suffering to end? When he was born and came into the world all bruised and blue. Now, the way to have him not suffer is to let him go."
At night, Dave and Kerri arrange Dylan on the flattened beanbag chair with cushions and a blanket in the middle of the room. Dave sleeps on the couch, Kerri on Dylan's mattress pulled into the living room - or vice versa.
Between them, where both can hear his labored, shallow breathing, rests Dylan, the last common denominator in a fractured relationship.
"I hope that afterward we'll continue to talk," Kerri says.
"Once things happen here," offers Dave, "maybe we'll meet once a year and go up there to Mount Lindo together. There's always going to be a bond."
The pace of Dylan's undeniable but slow process takes its toll on witnesses.
On Dylan's ninth day without nourishment, his limbs hang limp. He hasn't stretched in days. It seems the fight has gone out of him.
And one more thing.
"His button's not working anymore," Kerri says, the words catching in her throat. The little nose-touch that reflexively puckered her son's mouth into something like a kiss now produces no response at all.
Funeral arrangements have begun to take shape: a viewing of the body, followed by cremation and a memorial service a day or so later. Dave and Kerri have scheduled a meeting at Mount Lindo to settle on the final resting place.
"See ya later, alligator," Dave says, laying a kiss on the boy's head as they leave him with Nurse Vicki.
"Goodbye, Dylan," Kerri says.
They wind along the two-lane highways that meander toward U.S. 285 and the turnoff to Tinytown.
It's chillier than the last trip, but the late afternoon sun highlights the west-facing portion of one stone- and-wood-beam structure that, nestled against a stand of evergreen trees, features a vertical row of six niches.
"What about a flower holder?" Dave asks. "Is that something you'd want, Kerri?"
They settle on the third niche from the top. Kerri asks about an urn for Dylan's ashes. There are many options, the woman from the funeral home explains. Some families buy containers specifically made to hold remains.
"But I've also had families go to Michael's or Hobby Lobby and find a nice container," she says. "Or I've seen them use grandma's cookie jar."
An idea strikes Kerri.
"His Tigger box," she says to Dave.
The decorative container had been a gift from Dave's mom as they trimmed his room in a Winnie-the-Pooh motif.
"Call me with the measurements," says the woman, "and I'll see if it works."
When they return to Kerri's apartment, a flier on their door reminds them it's Halloween.
Grandma Vicki arrives and holds Dylan on the couch, while Dave and Kerri answer knocks at the door. One of Dylan's young friends has sent over a pumpkin costume, and Vicki unfolds it and lays it over him like a blanket.
"You are my little pumpkin," she says playfully.
"You want to put it on him?" Kerri asks.
Dave helps Vicki to pull the puffy orange vestlike costume over Dylan's head. A green winter cap serves as the pumpkin stem. Dave grabs the video camera and captures his son's last Halloween. Grandma Vicki takes Dylan's arm and waves it at the camera.
"Are you going to open your eyes?" Dave asks.
But Dylan's lids droop. Dave slides off the green hat and gently kisses the top of the boy's head.
* * *
Two days later, Michelle Cox, the social worker from the Butterfly Program, stops by to check on how everyone is doing. Something seems to be missing.
"Where's the puppy?"
The Shar-pei they named Lily, for the past several days a fixture in the living room and, much of the time, at Dylan's side, is conspicuously absent. Kerri, while retrieving the mail, had noticed a lost-dog handbill posted in her apartment complex.
Her friend Lisa Adducci, who had found the wandering pooch, called the number on the flier and arranged to meet the presumed owners. Kerri went along. After some discussion and examination, it was agreed that Lily was indeed the lost dog.
Sadly, the women handed over the puppy.
"Your dog came to us for a reason," Kerri told the owners while Lisa openly bawled. "She'll have a little bit of my son's spirit in her."
Later, Lisa echoes Kerri's notion that Lily's unscheduled stop in their lives had mystical overtones.
"God sent this puppy to comfort us, to comfort Dylan," she says. "She was sent to us for a reason. That's another reason I felt compelled to give her back - is Dylan holding on until the puppy finds its rightful home, so he can go home, too?"
Back at her apartment, Kerri has rearranged some of the living-room furniture. A library table has been pushed against a wall. A thick, white candle burns on top, surrounded by artifacts of Dylan's short life - the "Piggie Pie!" book, some small stuffed animals, a piece of artwork given to him by a young friend.
"It's kind of a little shrine," she explains, "to help with his spiritual passing."
The mist from Dylan's nebulizer seeps from the connection between the tube and the trach and curls around his face like a fog. He sits on his mother's lap while Dave turns on the laptop computer and plays the musical slide show that a friend compiled for Dylan's funeral and burned onto a CD.
Dylan in Grandma's cowboy hat. In an Incredible Hulk costume for Halloween. Sporting a body cast after hip surgery. His tiny arm displaying a wash-off dragon tattoo.
Kerri snuggles Dylan and taps her foot to the background music, the Tom Petty tune "Wildflowers." She fingers the string on a helium balloon with her free hand and softly sings the chorus:
"You belong among the wildflowers
You belong somewhere close to me
Far away from your trouble and worry
You belong somewhere you feel free."
She plants a kiss on his cheek as the slide show winds to a close.
"Wow, Dylan," says Kerri to the sleeping boy. "You're pretty powerful."
That power has been amplified by the waiting - it has now been 11 days since the boy's last feeding - and moves people in different ways.
A couple of days earlier, Grandpa Don had been overcome as he watched his dying grandson, left the apartment in tears and cried all the way home.
So now, when Grandma Vicki arrives to visit and mentions that Grandpa Don is on the way, Kerri looks shocked. After Don's recent meltdown, Kerri asked her mom to explain to Don that she believes Dylan can sense the sorrow and thus clings to his physical body.
But Vicki hasn't done that, and Kerri presses her mother for a clarification: Does she support what they're doing or not?
Vicki pauses to pick her words carefully.
"I guess ... I just don't understand," she says.
Kerri's jaw drops. Is her mother questioning the basis for their decision? Or does she just not remember seeing Dylan shudder uncontrollably, defying the seizure medication that has been repeatedly ramped up with no lasting effect?
She fights the angry urge to tell her mother to leave but says nothing.
For Vicki, Dylan's decline tugs her in two directions.
She knows that only Dave and Kerri truly understand the severity of his suffering. But overwhelming sorrow, coupled with religious faith, also moves her to pray for a miracle.
Recently, when she mentioned the pending funeral arrangements to a friend from church, the woman told her she had a defeatist attitude. The words stung, because Vicki doesn't feel that she's given up on God, and a miracle, at all.
And she sees no contradiction in her support of the decision to end Dylan's life and her faith-driven prayers to heal him.
"I'm just saying, 'God, it's your will,"' she explains later. "He can heal Dylan. But whether he heals or he doesn't, I have to accept that. It may take awhile. I still cry every day. But I support Kerri and Dave. He's their child. They both love that baby so much."
But now, the tension bounces off the walls of the apartment and, with neither Kerri nor Vicki pressing the point, dissolves in the silence. The moment passes, and Kerri smooths over the conflict by suggesting to her mom that she hold Dylan.
Grandma Vicki smiles and pulls out her camera.
Signs and stars
Dylan's endurance means only that his timing is up to him, his parents say.
"Do you think a miracle is happening?"
The question comes to Kerri over the telephone from one of her girlfriends. Kerri gazes at Dylan lying on the couch and marvels at what she sees: a boy who's definitely skinnier than two weeks ago but otherwise not terribly different. His cheeks are full, almost cherubic.
After the false alarm of the first week, he has stabilized.
Still, as remarkable as their son's condition seems, and even though the vigil has extended beyond their expectations, Kerri and Dave read nothing into this except that Dylan will leave them when he's ready.
"Unless he opens his eyes and says to me, 'I'm going to eat. I'm going to develop,' then I'm not going to consider this an act of God," Kerri says firmly.
Talk of a miracle segues into a simple discussion of water.
At the start, Dylan's fluid intake remained at normal levels - partly to help him digest his medication and partly to make him comfortable. But that has had an elastic effect on the ordeal.
Even after cutting back by half, Dave and Kerri wonder if they're giving him too much. They consult a nurse with the Butterfly Program and reduce the amount by half again - now down to less than 7 ounces a day.
Over the next week, Dylan's limbs grow noticeably stiffer. Kerri massages him and stretches his arms and legs. His morning diaper is bone-dry. Now, for the first time since the feeding stopped 21 days ago, he empties his bowels.
Things are changing.
Kerri passes time by trying to count the leaves on a small tree near her patio. She counted 99 the first day. Today, only five - and the wind is picking up.
Shortly after lunch, Kerri picks up her cellphone and punches a button to check the current time. But something else appears on the screen.
One thick white candle burns low in the shrine to Dylan - the fifth since the vigil began, not counting about a dozen tea-light candles.
Kerri snuggles Dylan on her lap, lifts his T-shirt and draws her finger along his ribs. She pulls at the waistband of his pants and sees one hip bone jutting sharply against his skin.
For the first time, she notices a rash over the bone. It's a troubling sight - particularly so since Kerri and Dave have taken pride in the fact that in nearly five years, Dylan has never had a bedsore.
Later, a waking vision haunts Kerri: sores cover Dylan, hideous evidence of his body's breakdown in preparation for death. She prays it won't become a reality.
Later still, sitting on her patio and gazing into the sky, she spots a shooting star.
"Let go ..."
After all the waiting, Dylan makes his exit quietly, in his mother's arms.
When they awaken on the morning of Nov. 16, they know.
Kerri rises from the couch, Dave from the mattress pulled into the living room next to where Dylan lies. His hands, feet and face have turned cold, yet his torso burns with fever - 107.2 degrees when they take his temperature. His breathing becomes quicker, shallower.
Kerri calls Nurse Vicki and asks her not to come to the apartment as scheduled; she and Dave need this time alone with their son. Dave cradles Dylan in his lap on the living room couch and then passes him to Kerri and curls up next to them.
They whisper to him.
"Let go ..."
"Take your first steps ..."
"Save us a good spot ..."
They tell him how much they love him, how they'll miss him.
About 8:30 a.m., Kerri puts her hand on Dylan's chest and feels the weak rise and fall. His mouth twitches oddly. She and Dave look at each other with the same question.
"Was that it?"
They detect a slight pulsation on his tongue, then stillness. Dave finds their stethoscope and presses it to Dylan's chest - nothing. Kerri listens.
And this is how it ends - quietly, peacefully, with the two people who brought Dylan into the world witnessing his departure.
* * *
Dave, who had known all along that this moment would bludgeon him, begins to cry. Kerri can't find tears - though she feels empty and sad, the moment also brings peace and relief.
It is the 24th day since they stopped feeding their son.
They call Nurse Vicki back, and she speeds over to the apartment. As planned, she checks for a heartbeat and respiration and, finding neither, dials the pediatrician and relays the news. He repeats it back to her - twice.
"It's 10:10 a.m.," he says. "No heartbeat or respiration. It's 10:10 on 11-16-05."
Over the telephone, the doctor pronounces Dylan dead.
Nurse Vicki begins preparing the paperwork for the coroner. She feels a wave of emotion coming over her, then sobs. She has seen others die, but always adults. Children are different.
Kerri breaks the tension.
"You know," she says to the woman who has been their primary home nurse for the past seven months, "you're fired."
Time moves quickly now, though Dave and Kerri move in a fog.
Pastor Buddy Conn sits cross-legged on the living room floor in faded jeans, a long-sleeved T-shirt and a blue baseball cap, helping them organize their thoughts on final arrangements for Dylan.
Michelle Cox from the Butterfly Program also works her cellphone. She's calling the mortuary to make sure it can accommodate a viewing and cremation on consecutive days. There seems to be a problem. More calls fix the misunderstanding.
At one point, several cellphone conversations seep from the living room to the kitchen to Dylan's bedroom. Details. More details.
"I'm confused," confesses Kerri at one juncture. "I'm not sure what's happening yet."
Vicki Saiz sits on the couch now, caressing her grandson. Dave punches up an old video loop on his camcorder, hands it to her, and she peeks into the viewfinder to see scenes from Dylan's first day home from the hospital, even as she cradles him in death.
Grandma Vicki got the news at work. Grandpa Don got the call while driving RTD's Longmont-to-Denver route. A relief driver met him in Lafayette.
Now he arrives, in uniform and in tears. He hugs Kerri and Dave, then leans over and kisses Dylan's forehead as he lies on Vicki's lap. He takes his turn on the couch and holds Dylan one last, long time, cradling the boy's head in his hands.
Before he leaves, Pastor Buddy asks the family to pray with him. Dave and Kerri, Vicki and Don gather at the couch, where Dylan's body still lies on Don's lap, and they all join hands.
Pastor Buddy prays a meandering, halting, heartfelt prayer about leaning on Jesus in this time of sadness, acknowledging that while Dylan's pain has gone, those left behind must cast their pain to God.
He rises from his knee, still teary, and tugs his cap back onto his head. He hugs Dave and Kerri.
"We know he's safe now," the pastor assures them.
Grandma Vicki, still attending Dylan's body on the couch, gives her grandson a voice one last time.
"He says, 'I'll see you in heaven,"' she smiles.
Minutes later, a soft knock at the door reveals a tall young man in a dark suit with close-cropped hair and glasses. He's accompanied by an almost equally tall dark-haired, dark-suited woman. Their white minivan sits in the parking lot.
"We're sorry for your loss," they say softly.
Kerri kneels by the couch, where Dylan's body lies beneath a blue blanket, and rubs her cheek against his. She slides one hand under the blanket to grasp his. Dave paces the living room.
The funeral home workers ask: Would they like a gurney brought inside to transport Dylan's body to the vehicle?
Dave shakes his head. He will carry Dylan. The dark-suited man leaves to pull the minivan closer. The dark- suited woman produces two red roses for the parents.
Dave gently wraps his son's body in a quilt, lifts him and holds him close, then walks out the apartment door, down a dim, open-air corridor to the parking lot. Others follow in a shadowy procession.
They emerge into bright sunlight. At the curb, Dave gently lays Dylan's body on a stretcher beside the idling minivan. He and Kerri step back as the attendant slides it inside the vehicle.
Then Dave puts his arm around Kerri's shoulders, and she slips hers around his waist. After three and a half weeks of heartache, introspection, angst, frustration and fatigue, they say goodbye to their son.
Memorials remind Dylan's family how many lives his spirit managed to touch.
The following morning, Dave and Kerri drive to the funeral home under dark gray clouds that soon give way to snow.
It has been a mostly sleepless night for both of them. Dave's gathering head cold has erupted into a full-blown migraine so severe that it has played havoc with his stomach and the café mocha that used to be there. Kerri's cold, seemingly held in abeyance by the urgency of Dylan's final hours, runs rampant through her sinuses and lungs.
The parents sit across from each other at a mahogany table in a small room at the mortuary while a man answers their questions, explains the nominal charges and double-checks their personal information on the paperwork.
Kerri requests that some of the ashes be put into a bag, separate from those sealed in Dylan's "Tigger" box, so they can be scattered later.
The man asks what clothes they'd like Dylan to wear for the visitation the next day. Kerri and Dave look blankly at each other.
They kick around a few ideas - "What about a Hawaiian shirt?" Kerri asks. "Go out in style." But eventually they settle on another outfit: the knit sweater and pants Dylan wore on his first day of school.
Then Kerri realizes that Dylan has no shoes.
He has never had shoes.
About an hour later, Kerri finds the boys' shoes aisle at a nearby Target. She selects a nice pair of brown slip-ons and holds the sole of one shoe against her hand. She has no idea what size Dylan would wear, but she knows that his foot extends from the bottom of her palm to the last joint of her middle finger.
Turns out to be a child's size 8½.
She has brought along the sweater and slacks in a shopping bag, and now she removes them and spreads them on the store's carpeted floor. She places the brown slip-ons below the pants and views the ensemble.
Amid the wet snowfall, Kerri climbs back into her car and drives the outfit back to the mortuary: sweater, pants, socks - and Dylan's first pair of shoes.
The next day, she arrives at the church's cavernous sanctuary carrying a large stuffed elephant, two bulging plastic bags and a few medium-sized stuffed critters. Dylan takes up a fraction of the full-sized casket, and Kerri notices that her son's legs extend beyond the closed half-lid - hiding his new shoes.
She peeks to admire them.
She pulls five wooden block letters from one bag and assembles them against the open lid: D-Y-L-A-N. Then she fills the open space around the boy's body with stuffed animals. In the quiet, a quacking noise suddenly echoes.
Dave arrives and adds a stuffed bear wearing an Ohio State jersey. He and Kerri stand, side by side, gazing at their son. At once, they slide one arm around each other and squeeze.
For three hours, family and friends trickle into the church and take their turns at the casket. Some, like Grandma Vicki, linger long. Others take a respectful pause and move away. One friend stops well short of the casket and tells Dave he can go no closer.
Dave nods in understanding.
By early the next afternoon, the massive casket has been replaced by Dylan's metal decorative box adorned with a picture of Tigger. More than a hundred friends, family and acquaintances gather to pay their respects.
For an hour, prayer, songs and remembrances fill the vast sanctuary. Few words are delivered without tears, and most center on a recurring theme: Dylan may have done little with his damaged body, but he touched many with his spirit.
One of the last to take the microphone is Dave Walborn Sr., a father who admits that many years ago, as his youngest son struggled with school and responsibility, he never expected much. Yet now he stands in awe of Dave's devotion to Dylan.
Dave watches his dad, a former preacher, fight emotion with an uncharacteristically wobbly voice.
"I learned in the last couple of years that there are things to be proud of," says Dave Sr. "The things I've heard about my son in the last few weeks ... they're things I never thought I'd hear. I have great pride in the character of my son."
But he goes on to speak of regret. Living in Wisconsin, running his own business, he could always find a reason not to visit his grandson. It wasn't convenient, he'd say, and there was always next year.
"Now," he adds, "there are no more next years to come see Dylan. But we still have others to spend quality time with and let them know how much we appreciate them."
He lowers the microphone, takes a few steps to his right and stops in front of Dave's seat. He opens his arms.
Two days before what would have been Dylan's 5th birthday, Dave and Kerri sit on the couch in her apartment, burrowing through piles and piles of their son's clothing while a children's animated Christmas program plays on the TV.
Sorting things out.
"Do you have a method?" Kerri asks.
"The ones I like over here," he says, "the ones he never wore over there."
Grandma Vicki stares as the proceedings from a chair, silent and sad.
"Do you want to help?" Kerri asks.
Vicki slides out of the chair and onto her knees, and soon she is immersed in fabric laden with memories of her grandson.
"Look for the burgundy sweat shirt he wore when we took him fishing," she says, and soon Dave finds it in one of his stacks and hands it to the beaming Vicki.
The conversation in the apartment has changed. Words are measured now in memories, not milligrams.
"You want a piece of this, Dave?" Kerri asks, holding up a Tigger outfit.
"Yeah," he says. "And here you go ..." - he hands her another T-shirt - "He's had this a long time. You got it for him."
Kerri finds Dylan's tiny Broncos cap and places it comically atop her head.
"Ow! This one's burning my fingers!" howls Dave, a staunch Cleveland Browns fan, as he hands Kerri a Broncos T-shirt.
She finds a small pillow bearing Dylan's baby footprints and holds it to her cheek.
"Oh, God," smiles Dave, "I remember this one. His first long johns."
How this story was reported
Soon after Dave Walborn and Kerri Bruning made the decision to withhold nutrition from Dylan, they notified friends about a celebration of their son's life to be held the day before they began the process.
Among those who were told of the party was Denver Post photographer Andy Cross, whose former wife is a friend of Bruning's. Cross asked Bruning and Walborn if they would consent to a story about Dylan's final days.
They agreed on one condition: that the story not appear until after Dylan had died. After consulting an expert in media ethics, editors agreed.
For the next month, Cross and reporter Kevin Simpson spent most days with Dylan, Walborn, Bruning and others. Accounts of the parents' actions before the celebration of Dylan's life, including their meeting with The Children's Hospital ethics committee, were drawn from interviews with the participants. The same is true of the account of the time immediately preceding and following Dylan's death.
Other events depicted in the story were witnessed by the reporter.
His first jacket. An elephant hat Dylan wore, Dave recalls, "when his head was the size of my fist." Souvenir T-shirts from Vicki and Don's Mexican vacations and a visit to Six Flags. Swim trunks. Pajamas.
"I'm more wanting his baby clothes," Kerri says. "They mean more to me."
Some of the garments will be passed down to the children of close friends; others will be given to charity. Scissors will divide some of the most precious items so both Kerri and Dave can each have a swatch preserved in quilts that stitch together pieces of their son's short life.
The evening warms as they unfold each article, consider it and then refold it and place it in the appropriate stack. Dave packs his share of the clothing into some plastic storage containers.
He had been searching for direction when Dylan was born. Then the baby gave him a foundation. He has heard people tell him how he's become a better man, but he's not yet certain who that man is.
He'll look for answers down the road.
Boxes are stacked high in his apartment, in preparation for a move to Texas, where he can spend some time with his oldest brother and then perhaps head toward the Gulf Coast and find construction work in hurricane relief.
He will try to rediscover his music, his African rhythms.
Kerri, too, is searching. She will restart her massage therapy business, maybe go back to school. Perhaps she'll work with other kids like Dylan, although right now that may be "a little too close to the heart." She's still grasping for the fond memories buried within five years of day-to-day survival.
Like Dave, she needs some time on her own - "alone in space," she says - to figure out what it all means and where she goes from here. Now, she wakes up to the disorienting reality that she has nothing to do for her son.
"It's like losing your life," she says.
Both remain confident they made the right choice for Dylan, but that hasn't made the sorrow any easier to swallow.
"In some way, I'll always have to remind myself that he wasn't well from the beginning," Kerri says. "And everything we did was just a quick fix for the next moment. But eventually all those quick fixes left me with no moments."
Kerri and Dave each have a small urn with Dylan's ashes, and they drove up to Georgetown Lake with Vicki and Don to spread another portion of his remains at the site of the memorable fishing trip. Later, when they've paid for his niche, they'll place the rest at Mount Lindo.
For everything that has happened in the past few weeks, for all the questioning and waiting and wondering and hoping, they move ahead with the lingering notion that the final chapter of their son's life happened as it was meant to.
"I think he happened the way he was supposed to - from beginning to end," Kerri says. "And I think he wants me to continue to pursue life like that - to stand up and fight.
"In a way, he gave me a new voice."
The medical ethics of deciding Dylan's fate
Dylan Walborn's nightly feeding of Nutren Jr. through a tube kept him alive but also allowed him to experience increasingly difficult, probably painful and ultimately incurable seizures.
So while the term "medical intervention" is more frequently associated with technological advances, breathing machines or other dramatic equipment, in Dylan's case parents and doctors turned to that bag of liquified nutrients in balancing his medical care against his suffering.
"The nutrition issue is a very difficult one, because it is really laden with human emotion. Feeding and providing sustenance and fluid is so deeply ingrained in us to help another person that that is a very difficult decision," said Dr. Stefan Mokrohisky, chairman of the ethics committee at Denver's Children's Hospital.
"I guess you could say that even the medical intervention to provide the nutrition is no longer a benefit when compared with the burden of current existence," he said.
The legal authority to withhold nutrition from Dylan was largely grounded in the 1975 landmark case of Karen Ann Quinlan and in the 1990 U.S. Supreme Court case of Nancy Cruzan.
After Quinlan fell into a "persistent vegetative state," her father sought to halt any extraordinary medical procedures, even if that led to her death. A court initially rejected his request for guardianship, but the New Jersey Supreme Court ruled that decisions of life and death are best left to patients or their guardians and their physicians.
That decision, endorsed by several other courts in the years since, ultimately led to the creation of ethics committees at most of the nation's hospitals, including Denver's Children's Hospital.
In the Cruzan case, the U.S. Supreme Court made a point of defining medical treatment to include tube feeding.
"Generally, the case law is scarce in Colorado and supports parents' rights to make decisions that are demonstrably in the child's best interest," said Susan Fox Buchanan, an attorney and board member of the Colorado Health Ethics Forum, a statewide network of ethics committees.
Fox Buchanan also noted that the doctors consulted on such ethical decisions rely on much more than legal precedent.
"If you only look at the law," she says, "you aren't getting the whole picture about why doctors do what they do. All ethics committees take into account guidelines and position papers of medical societies."
Mokrohisky, who helped found the Children's ethics committee in 1984 and is co-director of the hospital's bioethics program, did not participate in Dylan's case but was briefed on it. He said that in cases in which parents and physicians want to allow a life to end, doctors use a "principle of proportionality" to balance the benefit of medical treatment against the potential harm.
After hearing from Dylan's parents, his pediatrician and his neurologist, two members of the ethics committee agreed that it was ethically sound to remove nutrition from the child, allowing him to die.
"We don't take a vote. We don't say, 'We think this is the way you should go,"' Mokrohisky said of the committee. "We say, 'These are potentially, ethically substantiated justifiable options, and we'll support you in your decision. We're not going to abandon you."'
While acknowledging the debate over the death of Terri Schiavo, and the beliefs of many that all life should be sustained under any circumstances, Mokrohisky said he hoped Dylan's story would help the public understand a process he believes is, at times, the ethical course.
"As people have said, we're a death-denying society, and turning that around to face the reality that every year 50,000 to 60,000 children are dying in the U.S. - well, how do they die?" Mokrohisky asked.
"Our obligation is to make sure it's in a dignified way, with as little pain as possible, in a loving kind of situation they choose."
"What you do to the least of these, you do unto Me"
Heartbreaking. If there is a way to determine for sure that this child was in the pain he appeared to have been in by the description, I believe he should have been allowed to die but not in this way. Prolonging the dying process by 24 days seems meaningless given the ultimate result was assured.
If there were ever a case for an assisted death, this was it.
So you vote for torturing the poor child as long as possible.
20 years ago, I think that assisted suicide (or 'unplugging', or whatever it's called) in cases like this would not have even been a question, as the patient would not have survived.
My heart goes out to the parents, as I'm sure that they faced the most difficult decision of their lives.
Honestly, I'd rather someone put me to sleep before they let me starve to death.
God forbid any of us go through this and have to make a similar decision. They had the decency to do it at home in private instead of making a media spectical. Tough personal choice.
Indeed. My prayers for this family. They had a difficult decision to make, they consulted a pastor, and made a decision that while tough for them, means this little boy is right now in the loving arms of God. It is not murder, it was a family decision to release him from his pain. And the evidence from the five years he was on this earth shows he touched a lot of people. This story will touch even more and remind us that not even tomorrow is promised to us.
Whether playing House or playing God, the game defines the players until the game is done.
Is death then a democratic process?
Dylan wasn't dying until his parents starved him - as such it is
murder, with the blessing of their wicked pastor! The floodgates
When you are inconvenient to some relatives, watch out. Your
words may come back to haunt you.
No but it's a decision for the family and not 537 pandering hacks in Washington DC
This is the statement every liberal is waiting to hear! It would mean the continued corruption of the medical system though it "makes sense" from a practical standpoint in certain cases.
If people would allow for assistance in "putting us to sleep" (or some people call it assisted suicide) people wouldn't have to starve to death.
I hope that day comes way before (if) I'm ever in need!
"We never thought we'd have to say, 'Yes, let's discontinue feeding our son,"'
the Schiavo fiasco could have been avoided with a planning and a living will with specifics detailed. hard to argue that it would apply here.tough to plan your future in the womb.
there's no reason for people to be in pain with advances in medicine and medical technology pain can be medicated.
Isn't the starvation murder of a disabled child beautiful? This story was so heartwarming, all the child killers surrounding the child in his angelic death throes. As I said with Terry Schiavo, why not just put a gun to the base of his skull and put a bullet in him? It would have been far more quick and humane but quite a bit more messy and it would have denied the killers the ability to pretend that they were doing anything different than murdering the boy.
I believe every starvation is torture, and indeed it HAS opened Pandora's box to the elimination of the merely inconvenient.