More Than a Diagnosis
DaKishia and Dan are parents to six-year-old Ezri, who is navigating life with a complex array of medical challenges. Diagnosed with breathing and liver problems, cerebral palsy, a bleeding disorder, follicular bronchitis, visual impairment, and hearing loss, Ezri has faced significant hurdles. She spent months in the NICU after birth and returned to the hospital frequently during her first four years. Ezri is also learning American Sign Language (ASL). Despite these challenges, her parents remain focused on celebrating who Ezri is beyond her diagnoses.
“These diagnoses are just a small part of her life,” DaKishia said. “Ezri is so much more than her medical challenges. We’ve always focused on who she is beyond those diagnoses.”
Finding Joy in the Everyday
For DaKishia and Dan, joy is an intentional practice woven into their daily lives. Humor and music are central to their family dynamic.
“We’re funny people,” DaKishia said with a smile. “Singing songs, telling jokes, and just being together bring us joy.”
DaKishia also reflected on how their perspective on joy has evolved.
“Our joy is hard-won,” she said. “It’s not just about happiness—it’s about resilience and defying expectations. We pack as much joy as we can into every moment.”
Navigating Challenges and Inspiring Others
Balancing work, family, and Ezri’s medical needs has presented unique challenges for Dan and DaKishia. With frequent medical appointments and the demands of daily life, maintaining a sense of normalcy requires constant communication and teamwork.
“It’s hard to manage a ‘normal’ job when you’re dealing with five appointments a week,” Dan shared. “It took a lot of communication to figure out how to support each other.”
Yet, through these challenges, the family recognizes their presence in public as a medically complex family can inspire others.
“When people see us out living our lives, it gives them permission to show up too,” DaKishia explained. “Disability is so common, and we want others to know they’re not alone.”
Community and Support
Connecting with the Family Support Network of Central Carolina (FSNCC) has been transformative for the family.
“We’ve been so fortunate to connect with the FSNCC—they’ve been an incredible resource for us,” DaKishia said. “When we moved here, FSNCC helped us get plugged in right away. It can feel lonely when you don’t know where to start, but they made a big difference, helping us find our community.”
DaKishia shared advice that has stayed with her:
“You’ll feel compelled to close yourself off, to protect yourself, but if you can open up just a little, you’ll find others who can guide you. Isolation is the biggest challenge, but connecting with others makes all the difference.”
It’s through those connections and shared experiences that the family has found strength. Moments of joy, like watching Ezri blow bubbles, remind them to embrace the beauty in everyday life.