Patricia McMorrow | 01.18.22
Playing with her Barbies, some sporting bold home haircuts, 9-year-old Priya Janae Smith of Burnsville, MN, mentions matter-of-factly that she has nearly died multiple times while hospitalized. She also makes clear that breathing through a tracheostomy collar is annoying, and needing a wheelchair to get around is worse.
After four heart surgeries to repair congenital heart defects, including a January 2021 procedure that resulted in a stroke and loss of movement from her waist down, Priya doesn’t mince words. Like when she told a neighbor, “I used to be able to walk, but I can’t anymore. And it really sucks.”
Priya’s mom, Christy Becker, describes what her daughter has endured—from her first open-heart surgery at 5 days to facing the after-effects of stroke and paralysis—from a parent’s perspective. “I wish I could trade places with her,” Christy said. “She had already been through so much, and now this, added to that. Everyone who knows Priya was like, ‘Are you kidding me?'”
But everyone in Priya’s orbit—including many who have been following her CaringBridge site since 2012 where she’s known as the “Princess Warrior”—also forms a bedrock of support.
“The amount of support we’ve received has been astronomical … beyond belief,” Christy said. “People I’ve never met, people I met once at church, so many have done so much to help. I can feel them supporting us, praying for us, loving us.”
Christy’s gratitude is as immense as Priya’s need. And while she prays for cardiac stability, for her daughter to walk again, and for recovery of brain functions damaged by the stroke, Christy said, “Reality is reality, and we have to deal with that.”
With so many facets to Priya’s reality—medical and emotional care, making her home accessible, and getting her back to her academic baseline—Christy never imagined how her own professional training, and that of her two sisters, would come into play.
The year Priya was born, Christy changed careers from hairstylist and salon manager to personal care assistant because she needed more flexibility to support a child who had been through two open-heart surgeries before her first birthday.
“One of my patients had MS and was in a wheelchair,” Christy said. “I showered and bathed her, gave her meds, got her into bed … everything. It would have been a whole new deal for me to care for Priya in a wheelchair, but I can see God was preparing me.”
Christy’s sister, Julie, a pediatric nurse practitioner whose specialty is caring for patients with complex needs, is the family’s longtime translator of medical-speak. In the harrowing time after surgery to replace Priya’s pulmonary valve and conduit triggered a stroke and spinal cord injury, Julie was torn between balancing her professional knowledge and love for her niece.
Julie helped guide Priya through five months of in-patient therapies in preparation for her homecoming, and she continues to blend her roles as advocate and aunt. For example, an unexpected bonus as Priya recovered during the pandemic was “COVID bubble-bonding” between Julie’s two kids and Priya. What the cousins saw as summer fun also kept Priya germ-minimized and socially connected when neither in-person nor online school were possible.
Bridging the educational gap has been Priya’s Aunt Joy, a grade school and special education teacher. She took leave from her job to move in with her sister and niece, turning the guest room into a classroom. While there’s no formula for helping a child recover short-term memory, concentration and problem-solving skills lost through stroke, Joy’s experience, patience and love have guided her in the steady reconstruction of Priya’s academic skills and confidence.
Lipstick, eye shadow and blush have helped, too. Joy, a makeup consultant, found that giving Priya creative freedom with cosmetics has been a source of fun and independence for a girl who had been short on both. And Priya learned a valuable lesson for later in life: When it comes to makeup, less can be more!
As fortuitous as it has been for Priya to have so much help close to home, creating her path forward is still really hard work. “She had just learned to swim and ride a bike,” Christy said. “She danced all the time. We were going to do gymnastics.”
Instead, Christy now navigates the paperwork of support, from securing an accessible vehicle and installing ramps and a stair-lift to replacing carpet with a wheelchair-friendly surface. A major victory was approval of a customized wheelchair for Priya that weighs 14 pounds vs. 44.
With encouragement from the family, Christy also has developed a plan for caregiver support. “Being a caregiver 24/7 is something I will do with all my heart—and I’ll do it with gladness,” Christy said. But she also knows the road is long, and that taking care of Priya means taking care of herself, too.
Priya’s grandpa, Steve, the main author of her CaringBridge Journal, has been capturing twists and turns in the road for a decade. In a recent entry, he wrote, “As tough as this is, we can see that Priya has the personality and grace to not let this define her. She’s got determination, love for life, and a hope that propels her forward. These will only grow as she participates in the challenges ahead. We are here with you Priya, no matter what it takes. You are not alone!”
The power of community also keeps Christy going. “As hard as this is right now, I know we’re not walking alone,” she said. “I keep telling Priya, ‘You have touched so many people’s lives.'”
That includes Priya’s brother, Miles, older by 12 years, whose troubling direction in life changed in response to his sister’s need. “To watch him switch roles and be able to be an adult, and the brother and son we’ve needed is huge,” Christy said. “He’s there for me. And he’s there for Priya.”
Cedric, Priya’s dad, is also there, adding extra elements of fun, including an amusement-park excursion in which Priya truly received princess treament.
While the extent of Priya’s ultimate recovery is uncertain and another heart surgery is expected in her teenage years, the focus today is on preparing her for tomorrow. She’s back in the classroom—depending on COVID protocols—had her tracheostomy removed, and the increase in her upper-body strength and confidence are impressive.
“Everything we’ve done so far has led up to right now,” Christy said. “Just like it will lead up to when she’s 16, and whatever Priya’s destiny is … or wherever God wants her to be.”