When my son was first diagnosed with Type 1 diabetes, I didn’t sleep for weeks.
Every beep of a monitor, every minute his blood sugar was slightly off, every outing with friends felt like a risk I couldn’t control.
The fear was constant because unlike the skinned knees and scraped elbows of childhood, this was something invisible, unpredictable, and potentially deadly.
Like so many parents of children with T1D, I had to learn to balance vigilance with trust. I wanted to wrap him in Bubble Wrap and keep him close to where I could watch over him. But I also knew that my job wasn’t just to protect him. It was to prepare him.
Over time, I realized that helping my son live well with Type 1 meant teaching him to build strong habits early.
Checking his numbers regularly, understanding how food and activity affect his body, and speaking up when something felt off were all part of that process. Those lessons weren’t only about blood sugar. They were about responsibility, resilience, and self-advocacy.
That process wasn’t easy. I had to confront my own anxiety and learn to let him go to sleepovers, sports practices, and school trips without hovering nearby. I had to trust that the habits we built together would protect him when I couldn’t.
Most of all, I had to remind myself that independence, not isolation, was the goal.
Science, Technology, and Community
When my son was first diagnosed at the age of 3 back in 2003, technology looked very different. Back then, continuous glucose monitors with smartphone syncing weren’t widely accessible, and apps that could alert parents to dangerous overnight lows were still far from common. We lived by test strips, logbooks, and intuition.
Today, families have extraordinary tools. Insulin pumps can learn patterns, CGMs provide real-time data, and digital platforms help care teams collaborate instantly. These innovations have transformed what’s possible for people with T1D.
But progress only matters if it’s accessible. Every child, in every zip code across Pennsylvania and beyond, deserves access to these lifesaving technologies. Families also need the education and support to use them effectively. Health insurers, schools, and community programs must continue breaking down barriers to access and training.
Science gives us the tools, but community gives us courage.
Our family found strength in friends, teachers, coaches, and even my son’s younger sister, who all learned what to do in an emergency.
That sense of shared responsibility made him safer and made us all more aware of how invisible chronic conditions can be.
Everyone who works with children, from educators to youth volunteers, should have basic awareness of Type 1 diabetes and how to recognize signs of distress. A little knowledge can save a life.
The invisible weight
Type 1 diabetes is often called an invisible disease. From the outside, a child may look perfectly healthy. But behind every smile can be a constant mental checklist: Did I bolus? Did I bring snacks? Did I pack extra supplies?
That invisible burden affects the whole family. Parents carry worry that never really goes away. Siblings sometimes feel overlooked or anxious. Children with T1D can struggle with feeling different in a world that doesn’t see their daily discipline or private frustrations.
That’s why mental health support must be part of every care plan. Managing blood sugar and managing anxiety go hand in hand.
The stress of constant monitoring, fear of hyper and hypoglycemia, as well as social isolation can take a quiet toll on both kids and parents. We need more counselors, school nurses, and peer networks who understand these realities and can provide meaningful support.
We can’t stop now
In the years since my son’s diagnosis, I’ve watched incredible progress not only in medicine and technology but also in awareness.
Type 1 diabetes is also known as “juvenile diabetes” given it frequently onsets during youth. However, this disease is truly a lifetime battle. Organizations like Breakthrough T1D (formerly JDRF) have been tireless in driving research, policy change, and community connection.
They are helping make the vision of a world without T1D not just a dream but a goal within reach.
But awareness alone isn’t enough. We need action.
Parents: Help your children build healthy routines early. Teach them not to fear their diagnosis but to own it.
Educators and coaches: Learn the basics of T1D management. You might be the first responder when seconds matter.
Employers and policymakers: Support workplace flexibility and insurance coverage for advanced monitoring systems.
Communities: Check in on the families quietly managing this disease every single day. They may not ask for help, but they need it.
A shared
responsibility
My son is now 24 years old, and although the way I help him manage his disease looks very different from when he was 3, my guidance and support is still ever present.
The years of me scheduling his quarterly pediatric endocrinology appointments have shifted to me partnering with him to choose his own specialists.
Helping him navigate selection of his health care benefits and choosing insurance plans that optimize care for his disease as well as researching additional benefits like nutrition and mental health counseling.
Parenting a child with T1D taught me that strength isn’t about never being afraid.
It’s about acting through the fear, guided by love, science, and faith in what’s possible. I may never truly be completely at ease with my son living independently and managing his diabetes. At least not until there is a cure. We can’t protect our children from everything, but we can equip them and ourselves with knowledge, tools, and a community that refuses to let them face this alone.
In this month of awareness, let’s move beyond awareness to empathy, understanding, and action. Type 1 diabetes may be invisible, but together, our support doesn’t have to be.
Paula Starnes, MHA, is a seasoned health care leader with more than a decade of experience advancing community health, behavioral health, and family wellness initiatives across Pennsylvania.
Born and raised in Philadelphia, Starnes has served diverse regions throughout the Commonwealth, including Central Pennsylvania, where her work has focused on improving access, strengthening care coordination, and supporting children and families
She is also the mother of a son diagnosed with Type 1 diabetes at the age of three, which has led her on a personal journey that continues to inform her advocacy and deep commitment to empowering families navigating chronic conditions.
Paula Starnes with her son Jonathan Adderly at Step Out: Philadelphia Walk to Stop Diabetes. CONTRIBUTED PHOTO