Member Profile: Rebecca Conway Shares a Caregiver’s Journey with TBI

As Brain Injury Awareness Month wraps up, Vaya Health shines a spotlight on the journey of Rebecca Conway. As a Consumer and Family Advisory Committee (CFAC) member and devoted parent and caregiver to an adult child coping with Traumatic Brain Injury (TBI), Rebecca shares her story below.

I am a mother and primary caregiver to my adult daughter, who survived a severe TBI at the age of 16. Our journey of recovery started in 2006—she experienced over six weeks of hospitalization, numerous surgeries, a three-and-a-half-month coma, and underwent extensive inpatient rehabilitation across various locations in Texas. The years that followed were marked by a relentless dedication to therapies aimed at relearning life’s basic functions—walking, swallowing, self-care—while adapting to the challenges of using only one functioning arm. All of that is on top of creating a life of purpose and relating to the world.

We moved to North Carolina in 2014, before Smoky Mountain Center (SMC) transitioned to Vaya Health. An internet search for Western NC resources available to Medicaid recipients led me to SMC. I completed intake via the 800 number, and my daughter, Erica, was placed on the waiting list for the Innovations Medicaid waiver, specifically the registry of unmet needs.

As a CFAC member, I work to educate others about the ongoing needs and ever-changing challenges of individuals with TBIs, striving to be a voice of advocacy. A TBI diagnosis is as unique and individual as each person, and the journey of recovery can vary greatly from one individual to another. When you’ve seen one brain injury, you’ve seen ONE brain injury. Support services need flexibility to address these needs. The strengths of survivors deserve to be encouraged and acknowledged, and support should be provided in areas that require support. 

As a caregiver, the most valuable resources I encountered were the caring and committed people working in the direct care service field. Within my daughter’s journey of recovery, numerous heroes have emerged, including Direct Support Professionals, Qualified Professionals, Care Managers, provider agency management and staff, Day Program staff, students, and volunteers, all of whom have played invaluable roles in her life. When answers and solutions weren’t immediately clear, so many were committed enough to brainstorm and problem-solve as part of a team to find or develop a positive direction in which to head. I value those experiences as building blocks for a brighter future for my daughter. Available services are only as good as the people providing those services. 

The Brain Injury Association of North Carolina is another valuable resource. Their website, conventions, online training and webinars, and local support groups offer education and connections with others who have similar shared experiences.

Last, but certainly not the least important resource, is the Asheville Day Program at Hinds’ Feet Farm. This program has played a huge part in my daughter’s journey since 2014. I still recall my first visit to the program, when the participants and part of a college class were on an outing. By the end of the visit, I knew this program was where my daughter would have a chance to be part of a community that would support her in relating to the world. It is participant-driven and offers great support to many survivors.

The challenges in the journey of recovery for TBI survivors are not always visible. The journey is not only physical, but mental, emotional, behavioral, and social—and they are intertwined in complexity. Each little step of progress in one area could positively affect progress in another. 

Early in this journey, I received a great piece of advice regarding my daughter’s improvement: do not expect, but instead, ANTICIPATE!

Image caption: Erica Conway (left), Vaya Health member with mother Rebecca Conway (right), Vaya Health CFAC member and caregiver.