Family focuses on healing child who nearly drowned
SAN ANTONIO — Liz Tullis switches on the living room lamp,creating a pool of light in the pre-dawn darkness.
She gently lifts 3 1/2 -year-old Conrad out of his crib. He is a beautiful boy,with pouty lips and soft,spiky hair cut in buzz style by his father,Matt Tullis. Liz changes his diaper,dresses him.
And then she begins the morning routine. She sits on the couch and places Conrad sideways across her lap,leaning him over until his arms dangle loosely above his head. She turns him on his stomach and bends his limbs,loosening the muscles that have tightened through the night.
Conrad softly coos,the only sound in the silent house. Then she puts him on the floor on his knees —”prayer position,”she calls it — stretching his arms out in front of him. She sings a song,the one she sings every morning:
Please let me talk again,I want to talk. Please let me walk again,I want to walk. Please let me play again,I want to play.
When Conrad was 17 months old,his paternal grandfather was baby-sitting him at his home in Temple. The two were in the back yard,playing. Dave Tullis went inside to get a drink of water. He bent over to load dishes in the dishwasher. When he looked out the window,he saw what he thought was a bundle of clothes floating in the swimming pool. It was his grandson.
Under water for unknown minutes,Conrad suffered major brain damage. Today he can’t walk or talk. His dark eyes seem perpetually caught in a 100-mile stare,with fleeting moments of recognition. He frequently lapses into a placid smile. Ribbons of drool sometime hang from his lips,which his parents gently wipe away.
The Tullises have moved past that day in the pool to focus on Conrad’s continued recovery — something they steadfastly believe in despite what some doctors have told them. In the wake of an accident that would rip many families asunder,they have closed ranks around the goal of healing Conrad.
But families such as the Tullises,in tireless pursuit of a miracle at all costs,face a cold reality:They have chased their dream beyond the parameters of what their health insurance will pay.
Their plan,for example,pays for only 90 physical therapy visits a year,but they want more for Conrad,so they pay for extra twice-weekly visits out-of-pocket. Insurance also stopped paying for his hyperbaric treatments — the theory is it forces oxygen into damaged cells — so the Tullises pay for the $8,500-a-year treatment.
Added to this is a range of Conrad’s alternative treatments:acupuncture,water therapy,aromatherapy. Altogether the Tullises pay more than $50,000 a year in the dream of seeing their son whole again.
It’s estimated that over the course of a lifetime,a brain injury that’s severe can cost upward of $1.2 million.
But it is the human and emotional toll exacted by Conrad’s plight that defines this family more than the financial cost. Theirs is a story about parents’limitless capacity to care for an injured child. But it’s also about a grandfather’s pain,and how that pain has been healed.
More than anything,the story of Conrad Tullis illuminates the triumph of hope over despair.
Conrad is fed mainly through a tube implanted in his stomach. Through Liz and Matt’s efforts,he largely has escaped the contractions that deform the limbs of the brain-injured.
After the accident,his small body was rigid,his back arching violently. Today his elbows bend slightly;his hands flex slightly inward. Occasionally his head pulls hard to the right,but with calm talking and pats he relaxes. Before,his parents couldn’t bend his body to fit into a stroller;now he sits comfortably.
After the accident certain doctors advised the Tullises to institutionalize their son.
But they have refused to give up,despite their son’s dim prognosis.
“We could put him in his bed and hook him up to his (food) pump and he could spend the rest of his life that way,”Matt says. “But no one knows where he’ll end up if we keep pushing him. And so we owe it to him to help him reach his maximum potential.”
The Tullises live in a modest but well-appointed rented bungalow,down the street from the stately mansions of Monte Vista. Despite the time involved in caring for Conrad and his younger brother,4-month-old Garrett,someone has found the energy to plant ferns on the front porch.
It’s now lunch time and Conrad sits on his mother’s lap on the kitchen floor. He already has consumed 4 ounces of baby food,and now Liz coaxes sips of chocolate milk from a small cup. Getting an ounce of milk down him can take half an hour.
“It’s a journey of a thousand steps,”she says with a small,wry smile.
Liz,37,is an attractive woman with dark,dramatic eyebrows and a warm,brisk,efficient manner. Her husband,Matt,43,is an affable and upbeat man with an easy grin.
They were a high-energy couple,traveling the world even after Conrad was born. Before the accident Liz was on the fast track at Bank of America in Charlotte,N.C.,a senior vice president with a master’s degree in international business pulling down six figures. He was a hospital pharmacist.
The accident caused a seismic shift. Today Liz still works for Bank of America,but now does so from home,ostensibly part-time,overseeing financial projects by telephone and computer. Matt is now a stay-at-home dad who occasionally works as a substitute pharmacist through a staffing agency.
This arrangement allows them to provide tag-team care for Conrad and Garrett,even as it has reduced their pre-accident income about 75 percent.
Liz’s parents,who live in Universal City,drive in several times a week to help out. Matt’s parents visit every other weekend from Temple to give the couple a break.
As Liz coaxes the sips,Matt prepares the formula Conrad takes through his gastric tube. Using Velcro fasteners,Liz straps him into his “stander”— a device that allows him to be upright while he receives his formula — and Matt turns on the electric pump.
Conrad gets the formula three times a day,plus a feeding at night.
After the accident,Conrad was on 10 medications,including powerful muscle relaxers. The Tullises credit his intensive physical therapy for their ability to wean him down to just three.
“We have to focus on his body so that when his brain heals,his body will be available to him,”says Liz. “And the brain heals at his own pace.”
Liz and Matt discount doctors who told them that with brain injuries most recovery occurs in the first year. Doctors don’t know everything,they say. No one expected their son to come as far as he has.
It took Conrad almost a year to cry. Now,says Liz,he has several distinctive cries.
After Conrad finishes his formula,his father lays him on a small mattress that has been laid atop a table in the bedroom he shares with Garrett. He takes a catheter and slides it into Conrad’s nostrils,suctioning out mucus. Then he suctions down his throat. If they don’t do this,Conrad could get pneumonia.
“There are no classes for this,”Matt says. “No one grows up prepared to do this. Our best resources have been other parents.”
Liz saw a brain-injured child in the hospital who was horribly contorted,her face frozen in a grotesque mask. That was not going to happen to her child,she vowed.
At his school,which they send Conrad to for the “stimulation,”teachers put crayons in his hand and help him “draw.”There is a mat on the floor with his name on it,even though he cannot sit on it.
One reason they had another child was the stimulation a sibling would afford Conrad.
“There’s nothing like having a baby brother tugging on him,”Matt says.
Liz takes out a photo album documenting Conrad’s years before the accident. The pictures show a cherubic,towheaded baby boy being doted on by a loving family. Here is Conrad on a trip to Paris. Here is Conrad learning to walk. The last picture before the accident shows a jubilant Conrad tearing open presents on Christmas morning.
The next picture shows him in a hospital bed,hooked up to tubes and a respirator.
“This is what we came home to,”Liz says quietly.
They planned it as a second honeymoon.
It was January 2004,and the Tullises had just moved to North Carolina from Austin,where Conrad was born. The plan was to leave Conrad with his grandparents in Temple and take an adventure vacation to Costa Rica.
“We weren’t comfortable leaving him with anyone else but family,”Liz says.
They spent New Year’s Day with family in Austin,then kissed Conrad goodbye. On Jan. 3,they awoke in the lush landscape of Costa Rica and plunged into a day of fun. Returning to their hotel that night,they found a note attached to their door. The message was brief:Call home emergency.
“My first thought wasn’t of Conrad. I thought maybe something happened to an adult,”Matt says. “Perhaps it is a protective thing. You don’t want to think the worst.”
The hotel office was closed,so they rushed into town. They bought a telephone card and Matt called his parents’house. A neighbor answered.
“They told us Conrad was in the neonatal intensive care unit,”Matt chokes out. Two years later and the memory still prompts tears. For Liz,too.
Knowing only that Conrad had fallen into his grandparents’pool,they hailed a cab to the airport,but there were no available flights out. They spent an interminable night in the airport. Liz got a flight out the next morning,but Matt had to wait another day because all flights were full.
At Scott and White Hospital in Temple,Liz ran to Conrad’s bedside and started singing to him.
“At first I was just thankful to find him alive,”she says. “I guess I was naive. I thought you either drown or you don’t,and Conrad would be back to his old self in six months.”
When Matt arrived at the hospital,his father was there.
“You have to know that my dad is a God-fearing man,a deacon who served his country,”Matt says. “He doesn’t drink or smoke. He’s just a good man and one thing he taught us growing up is to accept responsibility. When I talked to him on the phone in Costa Rica he said,‘Conrad fell into the pool and it’s my fault.’He fessed up right away.”
From the beginning,the couple decided there was no time for recrimination.
“Conrad was lying there,and we all needed to focus on that,”Liz says.
To this day,neither has closely questioned Dave about the accident. What difference would it make?
“He has to live with what happened,”Liz says. “More than any of us,he has that burden to bear.”
Her ability to forgive springs from certain givens,she says. For one,any energy she expends in anger means energy taken away from Conrad. For another,what her father-in-law did was simply negligent. And who can cast the first stone in that regard? Who hasn’t run a red light or talked on a cell phone in the car?
Why give Dave more pain then he already has,Liz reasons.
In the hospital Liz started an online journal that eventually would spark prayer circles across the country. Early on she wrote that the prognosis was not good:An EEG revealed Conrad was close to a state of vegetation.
“We hope for the best and prepare for the worst,”she wrote.
After a month Conrad was moved to Christus Santa Rosa Children’s Hospital,which the Tullises selected because they have family in San Antonio and they liked the lead physician,Dr. Donald Currie.
Liz and Matt put stock in the fact that initially their son was given only a 5 percent chance of survival. Still,their faith wavered at times. In the hospital they watched a videotape of Conrad before the accident.
“It is so difficult because he is here with us and yet we miss him,”Liz wrote in her journal. “At times we feel very alone and start to believe that the burden we have been given is too much for us to bear.”
After three months at Santa Rosa,Liz and Matt brought their son home. They had been living in a rental house but soon moved into Phil and Linda Hardberger’s home in Monte Vista.
The couple knew the future mayor through a family member;Hardberger learned of the family’s predicament and offered his home while he and his wife were off on their annual sailboat trip. They lived there for a time before moving into the bungalow.
They began the intensive rehabilitation regime that continues today.
Currie says Conrad is not now in a persistent vegetative state,the term used to describe Terri Schiavo,the brain-injured woman who made news when her husband fought to have her feeding tube removed.
“Conrad is severely developmentally delayed,but he is above a minimally conscious state,”Currie says. “We’re limited in how much we can know about someone with his degree of disability,but he can clearly respond to sounds,to calling his name. He is at the level of a baby somewhere in the range of 3 or 4 months old.”
Currie said he expects Conrad will continue to improve at taking food by mouth and at lower-level motor skills such as rolling over and holding his head up.
“We can’t cure Conrad,but we can do things to prevent painful complications,”he says. “What we can do is make life for the child as good and pleasant and as high a quality as it can be now and 20 or 30 years from now. And the Tullises have done that as well as any parents I’ve ever seen.”
Often Liz’s father Anthony Wenzel takes Conrad to therapy. On a recent afternoon he held his grandson in his arms after his workout.
You would think having a brain-damaged grandson would be enough tragedy in one person’s life. But when Wenzel’s only son was 25,he was struck by lightning while riding his motorcycle and died.
After Conrad’s accident,Wenzel says,he felt bitterness in his heart. But then he realized bitterness “won’t do any good.”
“It’s hard to look at Conrad sometimes,though,to see how a couple minutes of carelessness caused all this heartache and pain. Why is he being punished? He’s just a little kid.”He pauses. “But life is hard to figure out.”
Dave and Sharon Tullis,too,have tried to understand how a loving God could allow their grandson to toddle toward the pool and suffer such harm. But slowly they have moved forward.
“There is still life,”Sharon says. “We find comfort in our family,our grandchildren,our friends.”
Dave says there was never a moment when Liz reacted to him with blame and anger.
“The first thing she said to me in the hospital is,‘I worry about you,’”he says.
He sits in a chair in the family room,which looks out onto the blue-glowing pool. Dave is a tall,gentle-voiced man with a silver mustache,a well-regarded dentist in Temple,where he and his wife have lived in the same ranch house since 1963.
Sharon is equally soft-voiced,a violin teacher who was playing at a wedding in another small town when the accident happened.
Dave gets a haunted look in his eye when asked to relive that day. After pulling his grandson from the pool,he began administering CPR. He called 911.
In the weeks after the accident,Dave was overcome with guilt and sought counseling from a therapist,a family friend who told him that his feelings — remorse,anger,despair — were part of the healing process. He couldn’t sleep. Friends sent cards and letters,enfolding the couple in a web of support. Many shared their stories of near-misses with their own kids.
Sharon overcame her initial anger at her husband by recalling the times her own vigilance had wandered as a mother. After several weeks Dave immersed himself in his practice,to keep the darkness at bay.
He also sought counsel from the family minister. The Rev. Dr. Thomas Allen assured Dave that God had some plan in store with Conrad’s injury,some ultimate benefit,even if we as mere mortals couldn’t see it.
But all the counsel in the world can’t change the reality that Dave Tullis — who keeps a picture of Conrad on his desk at work — will take to his grave.
“No,I will never forgive myself,”he says,his gaze even. “I never will. Even if Conrad got well tomorrow,I still can’t forgive myself for the trauma I have caused.”
But he has been forgiven. So much so that he and his wife are again asked to baby-sit when they come to San Antonio.
“We don’t want to raise Conrad and Garrett in an atmosphere of fear,”Matt explains.
On the anniversary of the accident,Liz always makes a point of calling Dave to utter the words he clings to like a life preserver. Don’t give in to despair,she tells him:Conrad needs you too much.
In their darker moments,when Liz and Matt contemplate the possibility that Conrad won’t ever run and play again,won’t ever be the boy he once was,they find comfort in knowing they are doing the best they can for him.
It’s a love boiled down to its essence. A love with no guarantee of return.
“If I can just see signs that he has some enjoyment in life,that’s getting us there,”Liz says.