Beginning Again: A Journey of Self-Discovery After Loss

There are dates that live quietly in your calendar, and then there are dates that feel like miracles. This is one of the latter because we finally made it a full year (and one day for good measure) seizure-free!

The Weight of Time

If you’ve ever walked the road of epilepsy, you know that a year isn’t just 365 days. It’s 365 mornings of checking, 365 nights of listening, and 365 quiet prayers whispered. Each day feels heavy with the weight of worry and hope.

When my son was three years old, he was already navigating unimaginable grief after losing his dad and my dad shortly after. Then, we were handed another life-altering diagnosis: epilepsy. Epilepsy has a way of keeping you in a constant state of vigilance. Even when things are “good,” you’re bracing for the next wave of uncertainty.

The Subtle Onset

It started subtly. Small hand tremors with him calmly and curiously saying to me, "Look Mama, my hand is moving." Those movements didn’t quite make sense. They were moments that were easy to second-guess. Until they weren’t. The realization hit hard.

After numerous EEGs, MRIs, and an ungodly amount of doctor appointments, we learned he had focal epilepsy, also known as simple partial seizures. An abnormality on the left side of his brain was affecting the right side of his body. What began as tremors slowly intensified over time. The seizures became more disruptive and frightening. I felt utterly helpless.

The Search for Answers

When we moved out to Vegas, the first thing I did was find a good pediatric neurologist. We went through another round of countless appointments—EEGs, MRIs, bloodwork, medication adjustments. More bloodwork. More medication adjustments. The frequency of the seizures increased, and there were moments of fear I didn’t always show on the outside.

As a mom, you become both soft and fierce at the same time. There was a time when I thought we'd have to see a specialist out of state, and that terrified me to my core. I wondered if he would be able to have a normal life. I worried about how this would impact him at school. Would he still be able to play hockey? The what-ifs were endless.

A Moment of Triumph

But now? Now those feelings of uncertainty and fear have subsided. Because we finally made it a year seizure-free. He's on the right dose of medication, and right now, it's working.

Even with this victory, we know his journey isn't over. He still needs routine EEGs and MRIs. We still monitor. We still stay aware. Epilepsy doesn’t just disappear because a calendar page turns. But this milestone hits different. It feels like a deep exhale. That heavy weight on my chest is finally feeling lighter, and I feel like he will have a normal life as he continues to grow up. Like we can see the light at the end of the tunnel.

The Journey of Healing

Through grief, through loss, through neurological challenges, and through being three years old with a body that didn’t always cooperate, he has continued to grow, adapt, and move forward with strength. This past year represents more than medical stability. It represents hope that the worst is behind us.

For any parent walking this road right now—I see you. I see you counting days, resetting clocks, living appointment to appointment, and staying overnight in the hospital. The quiet strength it takes to keep showing up is immeasurable.

Finding Hope in the Darkness

And if you’re still in the early days of an epilepsy diagnosis, still searching for answers, still holding your breath… don’t lose heart. Milestones sometimes take time. Sometimes they take years. But they are possible. We are proof of that.

In this journey, I’ve learned that hope can be a fragile thing. It can flicker like a candle in the wind, but it can also burn brightly when nurtured. I’ve found that sharing our story helps to keep that flame alive.

So, let’s keep talking. Let’s keep sharing. Because in this journey of healing, we’re not alone. We can find strength in each other. And together, we can navigate this path, one day at a time.

---wix---