Volunteer Spotlight: Kim Hill

Volunteer Spotlight: Kim Hill

My husband Jason and I have four children. Kinsey is 12, Kaitlyn is 9, and Logan and Lyla are 3. We live in Raleigh, North Carolina. Kaitlyn was born in 2009 with congenital CMV, she was symptomatic at birth. Our first few years were filled with doctors' appointments, therapy sessions, and developmental evaluations. Kaitlyn initially passed the newborn hearing screening but has slowly lost her hearing. She now has bilateral cochlear implants. She also has sensory issues, low muscle tone, and ADHD. Kaitlyn loves to play outside, read books, and ride horses. While CMV greatly impacts our life, we've worked hard not to let it define us or Kaitlyn. 

Tell us about your professional/educational background.
I have a degree in sociology from Utah State University. As a teenager I worked at a summer camp for children and adults with special needs and I have also worked in special education classrooms. This background has given me a unique perspective and provided comfort when Kaitlyn was born and her future was so unknown. I knew that our life would be good and full and beautiful, no matter how she was affected.   
I work as a parent educator for the North Carolina Division of Public Health, teaching leadership and advocacy skills to parents across the state. I love the opportunity to connect with parents who have children with special health care needs and have found the feelings and emotions are the same no matter the medical challenge or diagnosis. We understand each other and I love adding more people to our village.
I am also the board secretary for the Family Advisory Board at UNC Children's Hospital. I’m enjoying this new role and the chance to give back and also influence the hospital that has been such a big part of our lives. I’m currently serving as the parent representative on a planning committee for a new children’s specialty clinic and I’m in the process of being trained as a parent rounder.  

What makes the National CMV Foundation’s mission powerful for you?
Women deserve to know about CMV. The mission is powerful, forward thinking, and strives to empower and respect women. When Kaitlyn was born I felt angry and deceived. I didn't understand why no one had told me about CMV. I still feel that way. I'm grateful to the Foundation for being such a power voice and for challenging the way the medical community thinks and talks about CMV. 

In your role as CMV Community Alliance Chair*, what goals have you set for 2019?
We have big goals in North Carolina for 2019! I'm excited to be part of a CMV workgroup that includes a number of different professionals and parents. We will be talking about legislation passed in other states and what route will be best for North Carolina. We have strong professional buy-in and support from a number of groups throughout the state and I’m hopeful we’ll be able to make significant change in North Carolina. 
I am also excited to organize some events to connect parents across the state. Congenital CMV can be very isolating and I want to create a community where parents feel they have somewhere local they can go to for support and advice. 
We have some activities coming up that will serve to connect parents and will also raise funds for the National CMV Foundation. On Thursday, May 9, we'll be at City Barbeque in Cary, NC for a giveback fundraiser. Details here.

What does success look like to you?
Success is when a family member tells me she asked her doctor about CMV. It's when friends from around the country contact me because they heard CMV being talked about on NPR. It's someone telling me that they enrolled in a study about CMV at our local hospital. It's doctors listening and learning and making changes that will help other families. It’s parents and professionals collaborating and becoming true partners. 
It's also Kaitlyn learning to walk a few weeks before she turned 2. It’s watching her teach herself to ride a bike. It's listening to my deaf daughter give a report on Paris to her 3rd grade class. It's learning how to advocate, teaching my children to advocate for themselves, and seeing change happen, even if it is slow. 

What motivates you?
CMV affects our life every day. When I see Kaitlyn struggle, listen to her question why she is the only one in our family who is deaf, or learn of yet another baby being born with CMV, I turn that sadness, frustration, and anger into advocacy. Kaitlyn’s determination and grit also pushes me to work harder. She’s brave and kind and trusting and I learn a lot from her.  
As a volunteer leader, what advice do you have for your fellow volunteers?
You don't have to jump into volunteer roles right away. The first few years were all about survival for us. As much as I wanted to do more, I couldn't. Kaitlyn's health and development, as well as that of my other daughter, needed to be my first priority. And some days it still does.  As Kaitlyn's gotten older, and her health has stabilized, I've been able to do more. Volunteer work has been healing for me. It helps me to feel like I’m doing something. I can’t turn back time, I can’t undue the damage done by CMV but I can work to make sure other women know about CMV and are given the opportunity to protect their babies. I recognize the countless examples of work parents have done in the past that directly benefit me and my family and feel fortunate to be able to pay it forward. 
Favorite quote?
"We are more alike my friends, than we are unalike"  ~Maya Angelou 
What do you like most about living in North Carolina?

I didn't grow up in the south but I love it here, it’s truly become home. I appreciate how kind and friendly people are here. Kaitlyn has always been accepted and embraced by our community and friends. We love the food, theater, parks, libraries, museums, healthcare, schools, and history. We also love the support we've found within the cochlear implant community in this area. 
You're happiest when?
I love spending time outside with my family and friends, particularly spending time in our backyard while our kids jump on the trampoline, ride bikes, or make up new dances. I also love to travel with my family and enjoy watching my children explore new places. 

*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.