The Lessons We Never Expected From Type 1 Diabetes

When a child is diagnosed with Type 1 Diabetes (T1D), families quickly realize they’re learning much more than carb counting and insulin dosing. They’re learning resilience, advocacy, patience, and how deeply a community can matter. What starts as an overwhelming diagnosis often becomes a journey filled with unexpected lessons — many difficult, but many meaningful too.

When Kate Perkins was diagnosed with Type 1 diabetes at age 40, she never imagined her daughter Hannah would one day face the same diagnosis. Today, both mother and daughter live with T1D — a journey that has given Kate a deeply personal understanding of the challenges, fears, and unexpected lessons families experience along the way. Here are five things she wants other families navigating Type 1 diabetes to know.

1. Your Child Is Stronger Than You Ever Imagined

One of the first lessons parents learn is just how resilient children can be. Kids who once worried about homework or making the soccer team suddenly learn how to check blood sugars, count carbohydrates, wear insulin pumps, and advocate for themselves in school and social situations. Families learn that T1D may require extra planning, but children can still play sports, attend sleepovers, go to college, travel, and live full, healthy lives.

2. It Truly Takes a Village

Before diagnosis, most families assume diabetes management happens primarily between parents and doctors. But they quickly learn that managing T1D requires an entire support network — teachers, school nurses, coaches, grandparents, friends, babysitters, and classmates all become part of the care team. Families also discover the power of connecting with other T1D parents who truly understand the journey.

3. Perfection Isn’t the Goal

There will be highs after pizza nights, lows during sports practice, middle-of-the-night alarms, and days when nothing seems to make sense. Families learn quickly that diabetes management is not about perfection. It’s about consistency, learning, adjusting, and giving yourself grace. Over time, parents realize the best thing they can do is show up every day, stay informed, and keep moving forward.

4. Advocacy Becomes Second Nature

Many families say they never expected to become experts in school accommodations, insurance terminology, prescription approvals, or medical equipment coverage. But T1D teaches parents to advocate fiercely for their children and eventually teaches children to advocate for themselves.

5. Joy Still Exists in the Middle of Hard Things

Even with the stress, fear, and constant management, families discover that joy still exists. Children with T1D still laugh with friends, score goals, attend dances, go to college, and chase big dreams. T1D changes a family, but it can also strengthen one and create deep appreciation for small victories and community support.

Your Voice Matters

If your family has been impacted by Type 1 Diabetes, we invite you to consider joining the AdventHealth for Children Patient and Family Experience Council (PFEC).

Our council brings together parents and caregivers who want to help improve the experience for other families navigating pediatric diabetes and endocrinology care. By sharing your perspective, ideas, and lived experiences, you can help shape education, resources, and support systems for future families walking this journey.

Sometimes the most powerful support comes from someone who simply says, “We’ve been there too.”

Your story and your voice truly matter.

To learn more about joining the PFEC council or other family and teen advisory councils, visit: https://www.adventhealth.com/locations/hospitals/children/family-and-teen-advisory-councils