Volunteer Spotlight: Rebekah Hall
Tell us about your professional/educational background.
After receiving our doctoral degrees at Fuller Theological Seminary in Pasadena, CA, my husband and I both became licensed clinical psychologists in Idaho. We work primarily with children, doing testing and diagnosis of neurodevelopmental disorders. This career prepared us in a unique and powerful way to be parents to a severely-affected CMV child.
What makes the National CMV Foundation’s mission powerful for you?
National CMV (at that time Stop CMV) was the first place, as a scared parent, that I found current, up-front, and understandable information about my child's mysterious diagnosis of CMV. The National CMV website continues to be my go-to for excellent resources for education and awareness, whether I'm speaking with childcare providers, pregnant women, or physicians.
In your role as CMV Community Alliance Chair*, what goals have you set for 2019?
Our Community Alliance in Idaho is called the Idaho CMV Advocacy Project
. In 2019, we anticipate the following:
What does success look like to you?
- Continue to work with the Department of Health and Welfare to provide feedback and guidance for the implementation of the CMV legislation passed in 2017.
- Work with local hospitals to encourage targeted CMV testing for babies who fail their newborn hearing screens.
- Produce newsletters for both CMV families and CMV stakeholders in Idaho.
- Summer kickoff CMV fundraiser at CircusTrix in Nampa.
- Tabling at various conferences and events.
- Provide CMV educational presentations to various groups.
As a CMV advocate, I feel successful when professionals in cCMV-relevant fields (audiology, pediatrics, obstetrics, etc.) are inspired, motivated, and mobilized by our efforts.
What motivates you?
My daughter. Born with symptomatic CMV, she will require full-time care as long as she lives. Now 6, she is such a joy. Her angelic curls and bubbly laugh are irresistible. Her happiness in a body that is so limited by our standards. But I'm not going to lie. Her care is exhausting, chronic, and too-often heartbreaking and frustrating. But every time I get to tell her story, every time that I get to talk to others about CMV or participate in the education of physicians or therapists about the care of severely impacted children, it enhances my sense of purpose for my family's situation and makes me feel so proud to be Keira's mama.
As a volunteer leader, what advice do you have for your fellow volunteers?
Every little bit counts. Your involvement doesn't have to be big or time consuming. Every time you tell your CMV story to someone who doesn't know about CMV is significant and important. Your story is powerful.
Also, make sure to monitor your own well-being as you volunteer. It's easy to take on too much because there is always "just one more thing" that can be done when it comes to CMV.
"Keep on dancing." As a kid, while preparing for dance recitals, our teacher would quiz us with 'what do you do if your shoe falls off?,' 'what if the music stops?', etc., to which the correct answer was always, 'keep on dancing.' It's stuck with me as a motto for life.
What do you like most about living in Idaho?
My husband and I eventually ended up back in Nampa, where we both grew up. It's fun to be in a place where we can see and appreciate the changes in the culture and environment over decades.
You're happiest when?
I love it when my family is all together (my husband, Jeff, and children Liam, 13, Ronin, 11, and Keira, 6). It can be a challenge to find activities that we all enjoy, so spending time, just the 5 of us, is extra special. I also love opportunities to be creative. I love doing art, writing, and dance.
Parenting our daughter has introduced us to numerous unforeseen opportunities. One of the highlights is that my husband and I are now running an "inclusion ministry" in our church. We try to make necessary accommodations as needed to help diverse people to all feel comfortable in our congregation.
*The CMV Community Alliance
is a newly launched pilot program for top CMV advocates per our strategic plan. Learn more
about the CMV Community Alliance.
Category: Advocacy, Awareness, Community, "Fueling Our Mission", "Parent Perspective"