The gifts and challenges of being a quadriplegic father

The routine varies a little each night — life with a newborn is unpredictable like that — but one thing is always the same: Before he goes to sleep, Josh Basile takes extra time to be physically close to his son, Calder. Sometimes Calder nestles into the crook of Basile’s arm and dozes. Other nights, if the baby is alert and wiggly, Basile lies down beside the co-sleeper bassinet and talks to his son face-to-face; lately, as Calder nears 12 weeks old, he’s started to smile at his dad. Basile’s partner, Katie Fava, often places their little boy on Basile’s chest, and helps hold him there.

“Katie is the one who does all the heavy lifting,” Basile says, and he means this literally. In the earliest stage of parenthood, so many of the demands are physical — the baby needs to be fed, burped, cleaned, dressed, rocked — and Basile, a quadriplegic who has only limited movement in his arms, can’t feed, burp or rock the baby. He can’t buckle the straps of a car seat, or wash a bottle, or change a diaper. His version of fatherhood is one that must transcend the limitations of a body that is immobile from the chest down.

But in the 18 years since the accident that left Basile paralyzed, he has learned to focus his attention and effort on what is possible, on the things he can do — so he goes to great lengths to make sure Calder can see him, hear him and feel him every day.

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Basile, a medical malpractice attorney, takes frequent short breaks during his workday at home to spend time with Calder and Fava. When the family goes out, Basile often strolls Calder in a special carrier that Basile and a team of engineering students at Johns Hopkins University worked together to design — the device mounts to Basile’s wheelchair and allows Basile to see Calder’s face, so Basile can smile at his son and talk to him as they roll along. And every night, Basile holds his child in the ways he can, a ritual he describes as both a joy and a necessity.

“Having all of those touches, those moments with him, being in his line of sight — I know I am a comfort in his life already,” Basile says. “I am a consistent comfort, a face and a voice and a body he knows. Maybe not my hands. But everything else.”

I first met Basile eight years ago, as he marked the 10th anniversary of his catastrophic injury. I wrote about all he’d accomplished in that decade — as an advocate for people with disabilities; as a medical malpractice attorney; as the founder of the nonprofit foundation Determined2Heal and a mentor to thousands of others with spinal cord injuries; as an inventor who designed a system that allows paralyzed golfers to play their own version of the game. In our conversations over many months, he spoke often of his dream to someday become a devoted partner and father.

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When Basile met Fava in 2019, she was recently divorced, an accomplished school psychologist and devoted single mom to a sweet, energetic 2-year-old daughter named Faeble. Basile fell in love with both of them, and he embraced his role as a dad to a busy toddler.

But he’d never been a parent to an infant. After they learned Fava was pregnant, Basile downloaded audiobooks on pregnancy and parenting, and reached out to several close friends who he knew would be able to offer insight and wisdom, because their circumstances were the same as his: They were dads, and they were quadriplegics. “I wanted to know, what did they learn from their experiences?” Basile tells me. “How did they do it?”

The “quadfathers,” as Basile calls them, shared honest stories about the extraordinary joys of parenthood, and also the moments that left them pained and frustrated. “One quadfather, who was paralyzed below his shoulders, he said: ‘Josh, I couldn’t get close to the baby. I felt like the baby didn’t want to be around me,’” Basile says. “He struggled so much with making that physical connection. And now that the baby is older and able to walk around, the baby loves being on his lap, going for rides. But in the beginning, he said it wasn’t what he thought it would be like.”

Another friend, whose limbs have been deformed since birth, described watching National Geographic episodes to learn how lions and other animals would care for their offspring. “So he would move the baby by their clothing with his teeth,” Basile says. “He would change the diaper with his mouth. He told me: ‘Josh, you know this, but there is always a way.’ That blew my mind.”

The conversations were illuminating, difficult at moments, and ultimately empowering, Basile recalls. As Fava’s pregnancy progressed, Basile practiced wearing an Ergo baby carrier filled with sacks of flour, to test whether his body could handle the weight, whether his skin could tolerate the pressure of the straps. He intensified his exercise regimen, intent on regaining movement in his right arm that he’d lost in recent years. One of the doctors who cared for him after his accident, who has since become a close friend, connected him to engineering students at Johns Hopkins, who agreed to help create the custom-made baby carrier that would attach to Basile’s power wheelchair.

“I knew I had to create that connection with him early on, but I didn’t know what that would look like. I had no idea,” he says. “It made me want to experiment with different possibilities. I just wanted to be ready for him.

Calder Grimm Basile arrived Feb. 23, three-and-a-half weeks early. In a note Basile wrote to his newborn son, he described the moment he heard Calder’s first cry, how “my heart and soul elevated to a level of love that I never knew existed.” He also quickly began to understand what his friends had told him to expect — especially when Calder was too little to support his own head, it was hard for Basile to be as close to his son as he wanted to be. Fava would hold the baby near Basile’s face, so he could kiss Calder’s cheeks and nuzzle his soft tuft of hair, or lay him on Basile’s chest, with pillows piled around them. Basile kept eyeing the various wraps and wearable carriers that he could use when Calder was just a little bigger, a little stronger.

That opportunity finally came one April afternoon, when the family took Faeble outside to roller-skate. Basile had expected that he would first practice holding Calder in a carrier in the house, for just a few minutes at a time. But Fava was resolute: “The baby is going on you, and it’s going to be fine,” she told him, and helped secure the wrap with Calder tucked against his father’s chest. It was the first time Basile had ever held Calder independently, without someone’s hands hovering nearby or his body surrounded by pillows. As the family made their way down the street, a neighbor waved and called to them: “Congratulations about the baby!”

It was a simple exchange, but it felt tremendous to Basile. “I was just so proud,” he says, “to be able to be the one holding Calder at that moment, when they said that.”

Basile was an 18-year-old college tennis player when the trajectory of his life changed forever. On Aug. 1, 2004, while on vacation with his family at Bethany Beach, a wave lifted Basile off his feet and drove him headfirst into the hard sand. Basile felt his neck break — his spine fractured at the C4 and C5 vertebrae, fourth and fifth from the top of the spine, leaving him paralyzed below his chest. After months of intensive therapy, he would eventually be able to shrug his shoulders and shift his arms; his right hand would grow strong enough to push the joystick of his power wheelchair, but he could not fully open or close his fingers.

Fava didn’t know any of this when she first caught a glimpse of Basile’s profile on Match.com in early 2019. As she faced the prospect of dating again after more than a decade, she felt especially protective of her little daughter and was focused on finding someone with certain attributes: family-focused, professional, motivated, altruistic. It wasn’t until she started clicking through more of Basile’s photos that she realized he used a power wheelchair.

“I’d never dated anybody in a wheelchair, and I had never had anybody in my friend group or a family member who had a spinal cord injury, so it was all pretty new to me,” she says. “I was smitten with him right away. He’s an incredible person and an incredible partner, and the dad that I knew my daughter deserved, and who I wanted to have more kids with.”

The pandemic sped up their timeline, they say, and they moved in together soon after the initial lockdowns in March 2020. With Basile, Fava, Faeble, Josh’s team of rotating, full-time caregivers, and Fava’s rescued dog, Ava, all in Basile’s apartment in Bethesda, they soon decided to hunt for a house. They settled in Potomac in January 2021 and began preparations to make the house fully accessible, which involved significant renovations — widening doorways, building a wheelchair-accessible shower, installing an elevator that could transport Basile to all three floors.

After the arrival of the coronavirus vaccines, they started working with fertility specialists to pursue a pregnancy through in vitro fertilization. Fava, who has full custody of her daughter, says she had already been profoundly moved by witnessing Basile with Faeble.

“Josh is the dad that she knows. She climbs on him, she’ll go rest on him,” Fava says. “She fully feels comforted and embraced by him. I already knew he was a wonderful father.”

Like so many new parents of the pandemic era, Basile and Fava have been unusually isolated as they adjust to their family’s new reality — which has also given them the chance to establish their own rhythm. The strength of their teamwork is obvious when I visit them one overcast May afternoon. As they prepare to go for a short walk, Fava is the one who straps Calder into the carrier mounted on Basile’s wheelchair. When Calder begins to fuss, Basile gently thumps his head against the wheelchair’s headrest, softly jostling the chair and soothing the baby. Outside, Basile’s wheelchair serves as Calder’s stroller, while Fava stays at their side, quick to pop a dropped pacifier back into Calder’s mouth.

Fava talks about how fully present Basile has been as a father and partner — how she’s felt deeply cared for throughout the process of undergoing IVF, carrying her pregnancy and caring for their newborn.

“Josh isn’t waking up in the middle of the night and getting bottles,” Fava says. “But he’s making sure that my ice water is always filled, that I always have healthy snacks next to me. Or he’ll just take time throughout the day to just come and sit with us, and be with us, so I didn’t experience the isolation that those early weeks can sometimes bring.”

The experience is a sharp contrast from her previous marriage, she adds.

“Parenting with a quadriplegic spouse has actually been so much more enjoyable and so much easier than when I had a fully able-bodied husband who just wasn’t in it,” she says. “The amount of things that Josh can do without lifting his hands is just incredible, because he listens and respects and asks questions and compromises. And that’s the partnership.”

They are eager to make their partnership a legal marriage — but they’re waiting, Basile explains, because Maryland’s Medicaid buy-in program for employed people with disabilities makes marriage a financially fraught prospect. Basile’s Medicaid benefits allow him his full-time caregiving support, which in turn allows him to work — but the program limits a disabled worker’s assets and income to qualify for coverage. Since becoming an attorney in 2013, Basile says, “I have not been able to have a single pay increase, because I’d get kicked out of the Medicaid program. It is very restrictive on your ability to earn and save for the future — and if you get married, your spouse’s income and assets become a liability.”

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He’s been working with the Hogan administration and testifying before the Maryland legislature on this issue for years, and as of September, he says, the administration had told him they would lift all income and asset limits for employed individuals with disabilities. On Wednesday, Basile learned that those new rules would be implemented later this year. “I was grateful that they lived up to their promise,” he says.

For now, though, there are still regulations that apply to spouses, and he intends to keep fighting until those rules are changed.

“It’s just a very strange place to be in, to not feel like a fully recognized family,” Basile says. “I can’t wait to legally get married, to have it be recognized that my daughter is my daughter and my wife is my wife. We’re dreaming of that day.”

Even as he savors his moments with Calder now, Basile is also eager for the years ahead, when there will be more he can do with his son — like the way Basile and Faeble have created their own games and rituals, how she crawls on his lap to cuddle or go for rides in his chair. Basile can’t wait to coach his children someday, when they’re old enough to play sports.

“My tennis coach, I saw him pick up a tennis racket maybe once in my life. He’d always be standing behind me, watching, observing, offering feedback,” Basile says. “To be able to mentor children, bring out the best in them — you can make a really big impact that way. As a quadriplegic, I can do that.”

Over the 18 years since his accident, Basile estimates he has counseled more than 1,500 families dealing with spinal cord injuries. He has become adept at forging lasting bonds with people — guiding them, nurturing them, making them feel understood, helping them see themselves as capable and powerful. Long before the arrival of Faeble and Calder, he was preparing for the work of parenthood.

Nothing brings him more joy, he says, than seeing the people he’s mentored reach new goals, find new sources of meaning and success, achieve something they once didn’t believe possible.

“And to know I had any role in that — it’s just so special,” he says. “Now, with Faeble and Calder, I get to do that for a lifetime.”

Story editing by Jenny Rogers. Photo editing by Annaliese Nurnberg. Copy editing by Brandon Standley. Design by Chelsea Conrad.

clarification

This story has been updated to reflect that on Wednesday, June 15, Basile learned that Gov. Larry Hogan's administration plans to implement new rules in Maryland later this year that will lift all income and asset limits for employed individuals with disabilities.

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