ELVERSON, Pa. — It’s been nine days since their family’s sudden moment of grace. Nine days since Pope Francis laid his hands on their 10-year-old son.
And now it’s 6 a.m. on a Monday, and Chuck Keating is laying his own hands on Michael’s body. Chuck soothes his boy, whose limbs are stiff from severe cerebral palsy, so he can gently roll Michael over in bed to change his diaper.
“Buddy, relax,” Chuck murmurs. “Relax. Relax.”
Michael, one thin arm outstretched, starts moaning.
The Keatings’ lives are defined by moments like this one, when it’s not even dawn yet, and Michael’s feeding-tube monitor is beeping, and his twin brother, Chris, is inventing his own smoothie recipe in the kitchen, and older sister Katie is trying to find her field hockey gear. Their days unfold under the gaze of dozens of Elmo dolls, because Michael can see the color red best, and under the wooden cross above his bed, and under the words on his bedroom wall: “Everyday holds a possibility of a miracle.”
A miracle — they always believed in it. And then they got one.
They almost didn’t bring Michael. Church officials had picked the band at Bishop Shanahan High School, where Chuck is the band leader, to play at Philadelphia International Airport to welcome Pope Francis on Sept. 26.
Chuck, 45, and his wife, Kristin, 43, lifelong Catholics who met in college, were thrilled.
Kristin, a fourth-grade public school teacher, planned to take Chris and Katie, but she thought bringing Michael was out of the question.
The lift on the family’s wheelchair-accessible van does not work anymore, making it difficult to transport him. His body can get dangerously overheated any time he is outside in hot weather. He needs to be catheterized every four hours.
But then the family’s priest gave a homily at Mass about the many Philadelphians who were vowing to leave town during the papal visit because of road closures.
“He said that people shouldn’t be going out of their way to avoid the pope, they should be going out of their way to do what they can to be there,” Chuck recalls.
He told Kristin: Let’s bring Michael.
So all five Keatings met the excited band in the Bishop Shanahan parking lot at 3:45 a.m.
As Francis stepped off the plane hours later, the band played the song closest to Philadelphians’ hearts, “Gonna Fly Now” from the movie “Rocky.”
Minutes later, the 78-year-old pontiff got into a waiting car. It began to drive away — and then Francis spotted Michael. He motioned to the driver to stop the black Fiat.
And then suddenly 13-year-old Katie was taking video, and crying, as the leader of their faith strode up to her brother, kissed his head and uttered a blessing. Chuck was looking away, overcome by emotion, then turning back to shake Francis’s hand. Ten-year-old Chris was putting his hands to his head, thinking, “I can’t believe what I’m seeing.” Kristin was squeezing the pope’s hand — “so soft” — and understanding only the emotion, not the words Francis said in a language she does not speak. Michael was raising his eyes at the moment of the pope’s kiss.
In an instant, the photos and videos were tearing across the world thanks to Facebook, Twitter and YouTube.
But even as the moment unfolded at the airport, reality intruded. As Kristin wiped away tears and gave interviews, she had one urgent thought: “It’s been four hours. Michael needs to be cathed. Now.”
On a tarmac far from a bathroom, Kristin improvised a shield using a Bishop Shanahan High School banner. Just a few feet away from the swarm of reporters, she crouched unnoticed to catheterize her son.
Kristin was in the Wegmans checkout line when her cellphone rang.
She and Chuck, who’d struggled to have children, had already adopted once. Katie, born in Texas, was a bubbly 2-year-old. Now they were awaiting the birth of twin boys to a mother in Kansas to complete their family.
Then the call on Oct. 27, 2004: Your twins have been born.
“Wrong family,” Kristin said serenely in the grocery store. “Our twins are due between Christmas and New Year’s.”
The representative of the adoption agency explained that these were the right twins, born at the wrong time. Michael was already moving into the birth canal when the obstetrician realized that Chris was breach, feet-first, the Keatings were later told. The doctor did an emergency Caesarean section that left Michael severely injured.
“We need to know whether you’re taking them,” the adoption specialist said.
Kristin says she has never once questioned their decision to adopt Chris and Michael.
Not during those early weeks in Kansas, when Kristin and Chuck took turns flying back and forth, trying to work, take care of their toddler daughter and be there for their sons in neonatal intensive care. Not when the boys were transferred to Pennsylvania, still so sick that each required his own medical flight, and Michael’s lung collapsed during the plane ride. Not when Chris was well enough to leave the hospital but Michael spent his first Christmas in intensive care. Not once, in all the years that followed.
The Keatings count the surgeries — one to insert Michael’s feeding-tube port and one for the pump that dispenses a muscle relaxer inside him, one to put a rod in his spine, then one to put steel plates in his hips. They list the doctors they must visit regularly — the neurologist for Michael’s seizures, the urologist for his semiannual kidney scan, the gastrointestinal specialist to calibrate what goes into his feeding tube.
They number, too, all the times they are at a loss to comfort their other two children when their brother is in danger or in pain: Katie, who flicks her long blond curls toward Michael when she gets out of the shower because she knows the water will make him giggle; and Chris, who is slight and wiry and dark-haired like his twin, but wears scuffed sneakers while Michael’s are spotless neon blue, the shoes of a child who will never run outdoors.
The Keatings believe in the power of prayer — even the ones that seem to go unanswered.
Kristin prayed to get pregnant, through three failed rounds of in vitro fertilization.
“I was very down on everything and just thinking that life didn’t seem fair at the time,” she says. “When Katie was born, I just realized that everything does happen for a reason. This is what was meant to be. ”
When Chuck learned he would be a father to twin boys, he started imagining backyard catches. “I have an infield now,” he thought.
Instead, he found himself learning to work his son’s feeding tube and to administer an enema.
“Everyone always wonders, why would God do this to one of his children? I questioned that for a while,” Chuck says. But caring for Michael has given him an answer.
“I think Michael is a teacher,” he says. “Michael has taught me quite a bit about patience, love, the importance of what a hug and a kiss means.”
At 10, Chris shares his father’s musical ear. He already plays six instruments — drums, guitar, piano, trombone, trumpet and violin.
Michael shares a love of music, too. When Michael fusses, Chris grabs his guitar to strum a few soothing chords beside his brother.
The Keatings know Michael’s tastes — “Beauty and the Beast,” Mumford and Sons and Bob Marley are among his favorites. One day, Michael started screaming on the school bus. His nurse looked for anything that could be hurting him, then checked what song was coming through his headphones. He was listening to Justin Bieber. And he clearly wasn’t a fan.
When Michael is in the hospital, Katie is the one to ask most often, “Are you sure he’s not in pain?” Once, when a doctor said Michael would need to stay at the hospital a day longer than planned, Katie, then 8, demanded by phone, “Let me have a talk with that doctor.”
Someday, she wants to work with children who have disabilities, in a school like the one Michael attends.
“When he just smiles,” she says, “it makes me happy.”
Caring for Michael strains the Keatings emotionally and physically. Kristin has had two hernia surgeries from lifting her 70-pound son and his bulky wheelchair.
The burden is also financial: There’s the mortgage on the wheelchair-accessible house they built, 50 miles west of Philadelphia. The caregivers they hire to help, on days their insurance plan won’t cover the cost. The $60,000 wheelchair-accessible van they need that a cousin just started a donations Web page to fund.
Years after bringing Michael and Chris home, the Keatings learned that they could have received a significant subsidy from the state of Kansas for adopting a child with disabilities. They were told they never got their check because they didn’t apply for the money until after they left the state with the babies. They have tried to make their case for the money in recent years but have not made much progress.
“We and other parents like us are constantly fighting — whether it’s the insurance company or the county or someone — for what Michael qualifies for,” Kristin says.
Some fights are far more emotional.
When Chris was ready for his first Holy Communion, in second grade, Kristin and Chuck assumed the twins would receive their first Communion side by side. Their parish priest said no: Because Michael could not recite his first confession and could not swallow the wafer on his own, the priest said he was not allowed to receive the sacrament.
“First penance? I said, ‘The kid hasn’t sinned,’ ” Chuck recalls, still enraged at the memory. “I said, ‘This is the last time you will see me in this church. He’s a child of God.’ ”
The Keatings found a different parish, St. Peter in West Brandywine, where the Rev. Michael J. Fitzpatrick had insisted that the church built in 2007 include no stairs.
“That needed to be our attitude about a lot of different things here — how do you make everything accessible? That means sacraments, too,” Fitzpatrick says.
Michael received his first Communion at St. Peter alongside Chris. Katie was the one to hand her brothers the host.
“That was, we thought, the most special moment of our lives,” Kristin says.
Every Sunday, the Keatings greet Fitzpatrick at the door of the stair-free church and take their place under the light of a round stained-glass window. When it comes time for Communion, Michael goes first, pushed in his wheelchair by Chuck or Katie. Fitzpatrick administers a little bit of the wine from the chalice through Michael’s feeding tube, using a syringe.
“There’s a real peace and a joy that Michael seems to have each and every time,” Fitzpatrick says. “I think we all perceive it as a moment that we’re in awe of the presence of God, both in the precious blood and also in Michael.”
The papal blessing has only added to that sense of awe for those who know the Keatings. The family’s house has filled up with pope-themed gifts — a Francis bobblehead, a Francis doll, a framed drawing of the Holy Father, commemorative bracelet charms, Vatican flags.
Then there are the e-mails, from strangers writing to share their own struggles raising children with disabilities.
“When I saw the Holy Father bless your son, I couldn’t help but imagine him blessing my Ryan,” one father of a 19-year-old with cerebral palsy wrote to the Keatings. “It’s a hard battle. . . . Please remember, we’re never really alone.”
A week after the pope’s visit, Katie’s field hockey team comes in third place in a tournament. Chris shows off his handmade “Minecraft” characters. Michael starts his week with a recorded message from Chuck in his backpack: “Yippidee dippidee doo! I love school!”
The glow of the miracle still permeates their home.
“Every time we look at Michael now, we see it,” Chuck says.
Kristin agrees. “So many times we feel alone. People who love us, who care about us — no one knows what we go through sometimes,” she says. “It’s so scary, so much of the time. I get scared of the fact that people don’t see — ” She breaks off, and Katie puts her head on her mother’s knee.
“I feel like so many more people now are keeping him in their prayers. When he goes into a surgery, he’s going to have people praying for him,” Kristin says. “The pope kissed our son. He’s saying that it’s going to be okay, and I’m here with you.”
They have never been sure how much Michael understands of the world they strive to create for him each day. Chuck believes he recognizes their voices. Kristin believes he knows his own name.
But they are certain of some things. Certain that Michael feels joy at his siblings’ caresses. Certain that God hears their prayers for him. And certain that when Francis blessed him, Michael smiled.