Zeke’s suffering began before he was born. His homeless and pregnant birth mother walked into Children’s Hospital in shock. She had received no prenatal care and had traces of marijuana in her system. He was being starved of oxygen. For three days, doctors pleaded with her to consent to an emergency C-section so he could be born healthy.
On April 28, 2016, Zeke entered the world pale and floppy – no grip, no suck reflex, no spontaneous movement. More than half his brain was damaged. On the 10-point Apgar scale used to measure the health of newborns, Zeke scored a one. When he was brought into his birth mother’s hospital room and cried, she told him, “Shut it.”
She left the hospital, but he remained in intensive care, a ward of Erie County.
Zeke passed through three sets of guardians his first year. His medical file labeled him a blind, quadriplegic baby with cerebral palsy. His arms and legs curled tightly against his body.
He was about to turn 1 when Chris and Sarah Sardina were moved to pray in a movie theater parking lot.
The Allegany County couple had just watched the Oscar-nominated movie “Lion,” about a lost 5-year-old boy from India adopted by an Australian couple. It got them thinking. Did their family of 10 – all but two still living at home – have room for another child?
They asked God for a sign.
Zeke showed up at their church the next day.
Leigh Anderson remembers the first time she met Zeke. He’d already been given back to the county by a friend of the mother’s who had agreed to be his guardian but wasn’t up to it.
Zeke suffered seizures. Drool streamed from his lips. His foster parent, a nurse, was doing her best, but Anderson couldn’t help but think the worst.
This boy may die.
Anderson had been appointed Zeke’s lawyer a month after he was born. When she requests a child’s birth records, she typically receives 10 to 20 pages. In Zeke’s case, she received more than 3,000.
She represented his interests in court when his birth mother appeared for neglect and parental termination petitions, and she checked on his welfare after his mother lost her parental rights. The father was never identified.
Anderson had seen cases of unwanted children with disabilities before. More than 9,500 children in New York’s foster care system last year were clinically diagnosed as having a disability – roughly one out of every three, according to the Office of Children and Family Services. In Erie County, disabled children needing therapeutic foster care are twice as likely to go without a permanent home for more than two years, according to Department of Social Services data. Those in the system that long are also far more likely than non-disabled children to enter foster care at age 8 or younger.
Zeke was more fortunate. He was eventually placed with foster parents in Rushford, more than an hour south of Buffalo. That couple happened to attend the same church as the Sardinas.
“It was like the hand of God touched this boy,” Anderson said.
Family and fate
The daughter of a pastor, Sarah met her future husband in her father’s church shortly before breaking up with a boyfriend and discovering she was pregnant at age 16.
“I had already felt God’s grace say, ‘I am going to walk with you no matter what happens,’ ” she said.
Chris, a Depew native, spent 11 years in the Navy as a nuclear electrician on submarines. He met Sarah while visiting his parents in Centerville one weekend. As soon as she walked up to him and offered a firm handshake, he thought she might be the one. They started dating after Sarah’s daughter Emily was born.
When they married in 1996, they thought they would have just a few more children. But before they knew it, they had Jacob, Lily, Heidi, Simon and Henry.
All eight lived in a cramped trailer in Centerville while they saved for a larger house.
They drew the line on having more kids.
“Then my body tricked me,” Sarah said.
Jonah joined the family. Then Eden, now 4.
They finally moved into a compact, five-bedroom home in the neighboring hamlet of Fillmore. Soon after, Chris picked up a biography of George Müller, an unlikely evangelist who would go on to care for and educate thousands of orphans in Bristol, England. He read the final chapters to his children.
“It just kind of touched my heart,” he said.
He and Sarah started talking about becoming foster parents some day.
Two years later in March 2017, they saw the movie about the young adopted boy from India.
That was a Saturday.
The next morning, they saw a foster couple in the church pew behind them. They had never had a meaningful conversation with Carlos and Theresa Gildemeister before, but now Chris had questions for Carlos about being a foster parent. Meanwhile, Sarah chatted with Theresa, who had brought Zeke.
Sarah peered into the stroller and saw him with his hip brace, curled up tight, his eyes closed. Theresa told her that she and her husband would be unable to keep him much longer.
“If we hadn’t met him the next day, it would have been a harder decision,” she said. “But because of that, how could we pass by him and say, ‘Maybe it’s another child.’ It just didn’t make sense to say that one is too hard; let’s pick a different one.”
Soon after, she called a local agency about classes for prospective foster parents. One was starting the next week.
Zeke comes home
Zeke was only 1 and needed ongoing medical attention when the Sardinas started visiting him. Their children would ask to hold him.
“They just fell in love,” Chris said, astonished by how attached his children grew to the chubby, tightly wound African-American boy who was nothing like them. “Their hearts just open up.”
Before long, Sarah was accompanying the Gildemeisters to Zeke’s doctor appointments and learning how to raise a child with severe physical and mental disabilities.
The Sardinas were approved as foster parents on July 31, 2017. Zeke moved in the next day. Nearly 18 months later, they adopted him.
The family adjusted.
A white board in the dining room outlines everyone’s daily chores – even Zeke’s, whose jobs consist of participating in various therapy and enrichment activities. Above the chore list, in giant letters, the board reads: By wisdom a house is built and by understanding it is established; by knowledge the rooms are filled with precious and pleasant riches. Proverbs 24:34
Zeke’s oversize high chair is set just outside the dining room, near a window. When doctors first diagnosed him, they said he would never be able to swallow. Zeke now enjoys food, though eating is a slow process. After his last hospitalization, doctors inserted a feeding tube.
Lily, on break from college on a recent winter day, brought in an oversize syringe of water to flush out his tube when Zeke had finished a 500-milliliter bag of organic PediaSure. Thanks to her experience with Zeke, she’s transferring to a university that specializes in physical therapy.
All the kids help with his care. Jonah, 8, plays with Zeke before catching the morning bus. Eden watches over him during home therapy. Henry, 13, sits Zeke on his lap to play video games.
Soon after the Sardinas became his foster parents, he stopped drooling. So did his seizures.
Friends often ask about the family’s decision to adopt Zeke, said Heidi, 17. “Like, ‘Why? Why would you want this?'”
The answer is, they love him. They accept him as he is, though they did make one change.
They gave him a new first name.
Since his birth name started with a Z, they gave him one with a similar sound – Ezekiel, Zeke for short.
That name is shared with a Hebrew prophet and means, “God strengthens.” Sarah recalled the Bible story of how the prophet Ezekiel gave hope to the exiled Israelites. With God’s command, he performed a miracle and brought dry bones to life.
Zeke is their miracle boy.
A different fate
One month shy of his 3rd birthday, Zeke weighs 31 pounds. He will get bigger and heavier. Eventually, carrying him up and down the stairs will not be possible. Dressing him, changing him and forcing his spastic muscles to move and extend will take increasing physical effort.
Raising a special needs child can be lonely, Sarah admitted, but she recalls what a foster parent trainer once told her: His worst day with you will be better than his best day in a group home.
Sarah recounted a painful visit last year to the pediatric unit of HighPointe, a nursing home in Buffalo. Without the Sardinas in Zeke’s life, it’s where he might have gone. She chatted with staff and learned that one 6-year-old girl there would soon move to a group home because no family would take her. A 2-year-old boy faced a similar fate.
“They feel the same lack of love as anyone who has all their abilities,” Sarah said. “The lack of stability and love is what’s really crippling.”
Erie County has more than 800 children in foster care, a fifth of whom require therapeutic care, according to Social Services data. Many have learning or behavioral disabilities that pale in comparison to Zeke’s challenges.
The need for families to take in children remains high. Of more than 200 children free for adoption, nearly a third have therapeutic needs. Many have waited years for a home. Children with disabilities are less likely to be reunited with their parents. One in 10 reaches adulthood without being adopted by anyone.
The Family Court judge who presided over Zeke’s neglect case and his December adoption called his story extraordinary. Lisa Bloch Rodwin has heard thousands of neglect cases, but few that could match this one.
“He received an enormous gift, because there are not that many people who are willing to take a child with that many special needs, who is not biologically related to them, and essentially devote their lives to his care,” she said.
With vigilant treatment, Zeke could live decades.
But his care will be an ongoing challenge.
Zeke’s physical therapist Candy Hodnet walked into the Sardinas’ house on a January day and greeted everyone like old friends. She picked up Zeke and laid down his chubby, 30-pound frame in the living room. She took off his shoes and started moving his feet.
Zeke managed a small, happy chuckle. Hodnet smiled back.
“Tell me more,” she said. “Tell me about your day.”
Hodnet, who has been providing Zeke’s home therapy since he was an infant, is one of his five physical therapists. She is the only one who visits the Sardinas’ home. The four other therapists and 15 physicians and specialists make up the rest of his health care team.
All are located in and around Buffalo – an hour and 15 minutes away.
“There are times when I’m up there two or three times a week, easy,” Sarah said.
Aside from cerebral palsy, Zeke suffers from digestive, orthopedic and vision problems. He’ll need surgery this summer for an underdeveloped hip joint. He has had strokes, seizures and extensive brain damage requiring visits to the neurologist.
Plummeting vital signs last fall sent Zeke to Oishei Children’s Hospital for nearly a month. He spent two nights there this week because of a virus.
At swim therapy in Orchard Park, a pony-tailed therapist pulled Zeke through the 93-degree pool. The therapist encouraged Zeke to reach for a bright, floating egg. After a cranky kid in the pool quieted down, Zeke started making happy sounds. The sights, sounds and physical motion of water therapy are meant to stimulate Zeke’s senses and help him develop better motor control.
With the swim therapy finished, Sarah carried Zeke into a large changing room. She lay Zeke on a padded surface, reconnected his feeding tube, changed his diaper, and gently wrestled straight his stiff and clenched limbs so she could pull on his shirt and pants. Then she wheeled in his stroller, strapped him in, grabbed his big diaper bag and pushed him through the slush-covered lot to her car.
Sarah isn’t sure how much swim therapy helps. But between this and his other appointments, he’s made medical progress.
Sarah opened a 30-second video on her phone she had taken days earlier of Zeke sitting up on the bed.
He sat up unassisted for 15 minutes – a record.
Zeke wears glasses strapped to his head now because the Sardinas discovered he’s not blind after all, just extremely nearsighted. Where many predicted he might never hold up his own head, Zeke can now sit up with limited help. He can eat. He makes a range of sounds, not just shrieks of pain. He uses his legs more often.
Zeke has learned to respond to more verbal cues and is developing some independent movement, said Hodnet, the physical therapist. As she manipulated his muscles on a blanket on the floor, Sarah watched from the couch.
He would be so cute if he could walk, Sarah finally said.
It’s not impossible, Hodnet replied. Zeke might just need a walker.
“He’s done spectacular,” she said.
Making ends meet
His progress comes with costs.
Chris works as an electrical plant operator. Sarah, an administrative assistant at nearby Houghton Academy, now works from home and has cut back from 35 hours a week to five.
Supporting Zeke and the rest of the young family requires sacrifice, creativity and faith.
The family’s renovated, five-bedroom house offers cozy, clutter-free charm born of sweat and muscle power.
On one recent afternoon, Eden, 4, and Lily, 18, spooned clumps of chocolate chip cookie dough in the white-cabinet kitchen. Upstairs, one bedroom features two curtained twin beds in a former closet space. Another room has a bunk bed for her two younger sons and a crib filled with stuffed animals and a prop-up pillow for Zeke.
As kids came off the school bus that afternoon, they checked on Zeke and set up solitaire games at the kitchen table.
The family overhauled their home’s interior and turned it into an open and inviting space, but one room remains half done. The same is true for the exterior paint job. A new roof would also be nice, Sarah said, but it has to wait.
The home’s most charming features are handmade. The cream-colored drapes and pillows in the living room were stitched from cotton painters tarps. Sarah painted the word “grateful” in black, artistic cursive on a torn-out window frame on the dining room wall.
Family entertainment means half-price ice skating or combining trips to Buffalo for Zeke’s appointments with a side trip to the Delaware Park Rose Garden or Canalside.
The family no longer needs a 12-passenger van now that the two oldest are married and Lily lives at college, supporting herself on scholarships and loans.
“Financially, it is really hard,” Sarah said. “We cannot keep up with all the American dream standards. But we do not feel our kids have lacked in terms of character and heart.”
Most of their children receive health insurance through a state-sponsored program. Eden, 4, will continue to receive food vouchers through the federal Women, Infants and Children program until she turns 5.
Medicaid covers Zeke’s health care, and Sarah can claim mileage reimbursement for Zeke’s many doctor visits in Erie County. The Sardinas were also surprised to learn of their eligibility for an adoption subsidy because Zeke is considered an exceptional-needs child. Though every adoption is different, the Sardinas have been approved to receive$33 a day, roughly $1,000 a month.
Local and state resources help parents like the Sardinas with training, emotional support, crisis intervention and respite care. In May, he’ll be enrolled in a special preschool, which will consolidate many of his therapy sessions.
If they need even more help, they turn to God.
“If it had been so direct that he had been led here, I can’t imagine that God would abandon us later,” Sarah said. “He’s faithful, and I trust that.”
In late December, Sarah recalled feeling strapped. She gave Christmas gifts to family members and wrapped tokens of appreciation for those who helped bring Zeke to the Sardinas. Gripped with worries, the couple prayed.
The family came home from Christmas Eve service at Houghton Wesleyan Church to find a giant box sitting on the porch with no signs of who left it. Inside were gifts for every child.
There was also a gift for Sarah and Chris. As the two unwrapped it, they uncovered smaller boxes, until finally, just an envelope remained.
Inside was a stack of ten $100 bills.
“It was like a whole second Christmas,” she said. “We were in shock.”
Sarah and Christopher adopted Ezekiel James Sardina on Dec. 18, 2018. He was 2 years and 8 months old.
To mark the occasion, Sarah made a sign for Zeke. It read: God gave you the gift of life. He gave us the gift of you.
Fourteen family members and in-laws came to witness the event in Erie County Family Court, but Sarah expected the matter to be a formality.
Instead, more than a dozen court and foster care agency staffers attended. Many were members of the self-dubbed “Z-Team,” whose members played a role in handling Zeke’s case since birth.
It takes so many people and costs so much to pick up the pieces when a parent fails a child, Sarah thought. Others felt the same.
“The happy stories are so few and far between,” said Anderson, the lawyer who represented Zeke shortly after his birth. “I know we all started sobbing.”
After the paperwork was finally signed, Judge Rodwin gathered everyone for pictures.
Then Zeke, a quiet boy who didn’t smile until he was 15 months old, started smiling and repeatedly calling out.
“Just that alone, it was like a miracle,” Sarah said. “It was like him saying thank you in his own way, his own way of showing joy.”