The Whole Family: How Epilepsy Shapes Our Experiences, from Childhood to Parenting: By Christopher Williams

Honestly, you probably never forget the first seizure. As a sibling of a person with epilepsy and other complex health needs, I know that I’ve never forgotten those early experiences as a young boy. At the time, my brothers and I were busy playing in the living room, loudly of course, and I remember the TV playing one of my sister’s favorite movies, the 1939 version of The Wizard of Oz, starring a young Judy Garland.

When my sister’s seizure started, my parents rushed to move her to the couch and find something to put in her mouth, which at the time, was the suggested advice. At first, in the commotion, my brothers and I didn’t even realize what was really happening. We were simply regular kids on a regular day. Even after it hit us that my little sister was having a major seizure, it seemed almost surreal. Was this even happening?

The Family’s Very Real Emotional Rollercoaster

Many families, especially the parents I’ve talked to over the years, relate similar experiences. Most say the first few months after those initial events feel like drinking straight from the firehose. And truthfully, this is a perfectly natural emotion for everyone in the family, as they support a family member with a diagnosis.

From grandparents to parents and siblings to aunts and uncles, everyone is suddenly thrust into a new world of medical terms, paperwork, day-to-day adjustments, and the fatigue of navigating it all. Supporting a child with a diagnosis truly is intensely emotional. Families like ours often ask so many questions, from the big to small, questions like:

• “How can I get my kid’s teachers to understand?”
• “How will we deal with this daily challenge?”
• “Are we really different?”
• “Why us?”

That last one is so deceptively simple, and yet, can be so overwhelming.

Children Often Adapt Differently

But even though there are similarities, there are also significant differences in how we, as family members, experience neurological diagnoses in the household. It’s often said that kids adapt faster than adults, quickly viewing the situation as their normal. At least for my brothers and I, this was the case. Even today, as successful adults, we tend to see my sister’s seizures and other medical needs as a regular part of our lives.

Even so, it was helpful, as children, to have simple explanations we could share with our friends. That helped cut through the dense medical side and the fear of being seen as the “weird” family. Routines can also help children feel safer and more capable, as they start to understand their role during a seizure. Kids often want to help but simply don’t know how. In addition, these routines bring clarity and reassurance to their lives, helping to minimize those quiet, worrying questions like “will my brother or sister be okay?” or “can I protect them?”

The Weight of Caregiving, in Focus

For parents and caregivers, there often comes the many frustrating battles: managing schedules, trying to communicate with schools, getting new medications, finding neurologist appointments, and so much more. This is what I call the “invisible labor” of caregiving: paperwork, tracking, planning, coordinating. It’s those unseen landmines of daily and weekly logistics others simply don’t see, all of which extract an enormous amount of emotional energy.

Parenting through medical uncertainty is challenging; don’t let anyone tell you otherwise. It can feel unending and like it’s stripping something away from us. Yet, through all of it, parents often become the biggest advocates for their children, often without even meaning to. But if there’s one thing I’ve learned in spending time with our parents at the Epilepsy Services Foundation, it’s how what feels overwhelming early on does become more manageable with support and community.

A New Dynamic for Our Families

So, what does it look like after the first seizures? Over time, as families, we establish a new cadence around medications, check-ins, and follow-ups. There is community and support. We learn that planning might look a little different, but life continues. And really, we’re still an everyday family that does the things we love, faces challenges the best we can, and tries to make sense of our relationships and experiences.

Instead of focusing on life as a continual set of restrictions, we can start to build a family culture of adaption and resilience. And small moments of recognition and communication, especially with siblings, can strengthen family dynamics. When every member is included in age-appropriate ways, the family can become stronger than ever. What does that look like?

Practical Steps for Families

Families, like the ones the Epilepsy Services Foundation works with, have benefited from a range of strategies For example, consider these.

• Connect with other families through support groups or community events.
• Create routines at home to give children manageable roles.
• Communicate openly with teachers, caregivers, and medical professionals.
• Talk with family about what’s happening and in age-appropriate ways.
• Track medications, appointments, and observations for clarity.
• Celebrate milestones and progress to strengthen your family’s resilience.

Moving Beyond Fear to Confidence

Obviously, there is so much more we could cover on this topic. For example, school partnerships are a huge part of the conversation, as are new homeschooling options. We could talk about activities like participating in sports or traveling, all of which are possible for families with a child with epilepsy.

But, if I could tell new families anything, it’s that epilepsy does not equal isolation. Sure, the journey is an emotional roller-coaster, without question. But our families shift from fear to confidence as their knowledge and community connections grow stronger. Community support often makes the biggest difference.

Bottom-line: families don’t have to navigate these experiences alone. Resources include support networks, events, and seizure first aid training, all designed to support the whole family experience.

Epilepsy Shapes Us But Does Not Define Our Lives

For everyone in the family, it’s important to remember: epilepsy doesn’t have to define a child’s entire world. Although we hear statements like these more often these days, I’d like to suggest we take it a step further.

Truly, although epilepsy need not define our every moment, it can and does shape the family as we learn to adapt, support, and grow together. The pressure can feel immense at times, but with support, children and families can thrive.

This is the difference the Epilepsy Services Foundation is making in Tampa Bay and for our families: helping families navigate epilepsy with resilience, connection, and hope.