Having a Child With Type 1 Diabetes: Q&A With Lisa Shepard

Lisa Shepard was born and raised in Summerville, South Carolina. She currently lives in Ridgeville, South Carolina, with her husband and three kids, one of whom has Type 1 diabetes. She is a registered nurse at Colleton Medical Center, a JDRF board member, and JDRF Advocacy Team Chair for the Palmetto Chapter. I recently had the opportunity to speak with her about her advocacy efforts on behalf of her daughter.

AM: Your daughter was diagnosed with Type 1 diabetes when she was 7 years old. How has your involvement with JDRF helped you to not feel overwhelmed by diabetes?

LS: Shortly after Cameron was diagnosed, I realized that this disease was not only misunderstood, but it was also disrespected. I knew very early on that I did not want to sit back and let this disease wreak havoc in our lives. We were introduced to JDRF the day she was diagnosed and we were given our aptly named “Bag of Hope.” JDRF has given us hope. Being involved with JDRF puts you in contact with people who walk the same walk, share the same passion, and understand the heartache. Also, JDRF has made great strides in improving diabetes care. I can’t imagine why someone would not want to be part of an organization that puts the silver lining around such a dark cloud.

AM: Tell us about training for the JDRF Ride to Cure Diabetes. Was it harder than you imaged? How did it feel on race day?

LS: When I was initially approached about the ride, I had a solid “no” for my answer. At that point, the only bike I had ever been on was a beach cruiser years prior. Then, with persistence from a fellow D-mom, I started to consider it. I love to be active, I love the outdoors, and most of all, I love the JDRF family. So, I agreed. The first month or so I wondered what I had got myself into, but before long, I became addicted. The most difficult thing about the training was finding the time. If I was going to train, I had to be sure my husband would be able to get to the school if our daughter needed us. I would only train when she was at school because outside of school I was taking care of her.

On race day, I was so excited; the energy of being with 700-plus people who share your passion is indescribable. I completed 77 miles — initially I was disappointed in myself because I wanted that 100-mile finish, but in time I realized just how far I had come in such a little amount of time and that I had also exceeded my fundraising goal. I was proud that I had tried something new and that I was a part of the biggest volunteer fundraising event in history.

AM: This year you are training for a ride in September 2017, and your daughter is going to do it with you. Why did she decide to take on this challenge? What do you hope she learns from this?

LS: I discovered at that first ride that they intend for you to keep coming back year after year. It was not hard to sign up again after the energy and passion I felt that weekend. My daughter had toyed with the idea of riding once she was old enough (13 is the minimum ride age). She had not given me an official yes and I didn’t want to push. After a very bad hypoglycemic event she told me with tears in her eyes that she was “tired of this disease.” We decided then and there that she would join me to share in the mission and indulge in the passion.

My main goal for her is for her to realize she is not alone in this fight. She has never been exposed to that many people gathered together with a common goal. I want her to see other Type 1s cross that finish line and I want her to know that I am by her side. We are stronger together, and together we intend to stay.

AM: How did you get involved with Government Day and what does it involve?

LS: When attending Government Day, we meet one-on-one with each congressional delegate’s office and explain the needs of the diabetes community, discuss current diabetes legislation, and talk about the developments in diabetes care. We share our personal connection and we even sometimes shed a tear. The delegates listen and take it all in and we ask if they plan to support us. We then wait to see if they sign on to a bill or sign a support letter. Either way, we know we did our part because we told our story and it was heard.

When I initially decided to become active with JDRF, we attended the Charleston JDRF Walk. I was not certain at first where I was meant to be and how I could be useful, but I approached the advocacy table and simply asked “What can I do?” Beth McCrary, Development Coordinator at the JDRF Palmetto Chapter, took me under her wing and showed me the power of my story. My experiences, coupled with my medical knowledge as a nurse, gave me the ability to talk to legislators about why they should support diabetes research and advancements. I could explain the medical benefits, too.

So now, after attending two Government Days, I’ve learned that each person’s story is a powerful one and one that should be heard.

AM: What is one piece of advice that you can share with other parents of kids with Type 1 diabetes?

LS: Don’t lose sight of hope. Hope for a cure or just hope for one good blood sugar level. Each time we have a goal — big or little — and we have hope, we have a chance at a brighter future.

Diabetes is hard on feet. Fortunately, there are some good ways to heal and protect them. Bookmark DiabetesSelfManagement.com and tune in tomorrow to learn more from nurse David Spero.