Daily Inspiration: Meet Jill Nelson

Today we’d like to introduce you to Jill Nelson.

Hi Jill, thanks for joining us today. We’d love for you to start by introducing yourself.
It all started one day in 2008 with my 12-month-old twin daughter (Jackie), who had a small seizure cluster. I wasn’t sure what it was, but I knew something wasn’t right. I called my husband and my sister (my mom was out of the country then) because I didn’t know what to do. I couldn’t leave to go to the hospital immediately because I had her twin brother (12 months) and older sister (2.5 years old) with me, and I was 3 months pregnant. After waiting for my husband to get home and my sister to get there, we headed for the hospital. From there, she was diagnosed with epilepsy, and that was 13 years ago. Then in 2015, and two more kids later, her older sister, Marissa, started having similar symptoms at age 8.5. It took us 7 months to figure it out and 4 ER trips in 4 months to finally get her diagnosed with epilepsy too. After this, I knew my hands were full with 5 kids ages 3-9, and my life needed to focus on different things.

We then started to attend a local Epilepsy support group (Triangle Area Epilepsy Support Group) in 2013; we started doing research studies with my two oldest girls at Duke Children’s and became more involved in the local community. In this Epilepsy Community, we found friends just like us with 1 or 2 kids in the family with epilepsy. After a couple of years in the Epilepsy Support Group, I volunteered with 2 other friends to help keep the group going.

In 2018, we turned the Epilepsy Support Group into a Non-Profit Organization, Triangle NC Epilepsy. From this new beginning, we began reaching out to other organizations to let people know about us. We reached out to our local city and town governments and invited them to come to speak to our group. Connected with doctors and professionals in our area and learn from their experiences. Then COVID-19 came, and it halted all of our previous efforts. Finally, this Spring (2022), we have started connecting with other Epilepsy Groups in the State of NC. NC DDC, Epilepsy Foundation, Epilepsy Alliance, local towns and cities, UNC, Duke, and school systems, etc., when deciding to be more involved in the Epilepsy Community in 2015. One of my daughters had said, “Mom, I like our new Epilepsy friends. Can we do MORE with them?” At that point, I knew I wanted to make a difference, but I still had to do it within the means of my large family with lots of medical and special needs. So from there, I changed my mindset and made the time to be more involved. I couldn’t have done what I have done without the support of my husband and extended family. Through this story, I hope others see that “we can only do, what we can, with what we are given.” My goal is to help connect others to our local Epilepsy Community to get the support and resources they need to thrive.

Alright, so let’s dig a little deeper into the story – has it been an easy path overall, and if not, what were the challenges you’ve had to overcome?
No, it hasn’t been a smooth road. The struggles I have had along the way are:
1. Having kids so close together that I had to sacrifice helping one to help another
2. Not going to social things as normal moms do
3. Not getting diagnosing from some doctors when I knew that was right.
4. Having other kids being “weirded out” by kids’ disabilities
5. Having other adults not being understanding of my kid’s medical disability
6. Not going to many normal places and events because it is hard for my girls.

But through these struggles, I see the blessing once we get through the struggles:
1. As the kids are getting older, they are helping each other because they are so close in age
2. Realizing it is ok to not go to social things
3. Being strong and making sure we get the diagnoses that are needed
4. Finding the right friends eventually for my kids.
5. Surrounding ourselves with adults who understand
6. Finding other events and places that my kids can go to.

Thanks – so, what else should our readers know about your work and what you’re currently focused on?
At Triangle NC Epilepsy, we specialize in providing support to the locals. We aren’t here to find a cure, provide money for medications (we let the bigger organizations do that), or run big events. Still, we are here to listen, educate and advocate for people in our local community. We do it through monthly virtual and in-person support group meetings and a private FB page. That is the biggest thing we are known for, and how does that look?

On the private FB page, we have people that post almost every day, asking questions, and giving resources and ideas to help each other with epilepsy. There is something for everyone, whether adults with epilepsy or children with epilepsy. In our monthly support group meetings, we bring in doctors, professionals, school officials, etc., to help educate us on the Epilepsy world and how to navigate it. We help advocate by working with the Epilepsy Alliance and Epilepsy Foundation by supporting their events and communicating with them. We are most proud of keeping our tight-knit community in tack. Over the years in the Raleigh, NC area, there have been Epilepsy groups that have come and gone. So far, we have been around for over 8 years due to strong families and individuals wanting to stay connected.

What sets us apart from others? Our kindness and genuine love for others who are different and see them as God’s children. We believe that everyone has a purpose, which looks different for each of us. We are all children of God, and He loves us for our differences.

Are there any important lessons you’ve learned that you can share with us?
Lesson learned: It is ok to struggle through life. It isn’t going to be perfect. Each struggle/trial we go through is a learning experience where I understand what I am going through much better.

Contact Info:

• Website: trianglencepilepsy.com
• Instagram: trianglencepilspey
• Facebook: https://www.facebook.com/trianglencepilepsy

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Image Credits
Over the Edge/Duke Health (Erin Frost repelling off of a tower) Erin Frost – purple pumpkin Erin Frost – Group sitting around table putting volunteer bags together Jill Nelson – group picture on stairs Jill Nelson – two women shaking hands Jill Nelson – group posing on a back deck