By Stacey Chillemi | Award-Winning Podcast Host | 20x Bestselling Author | Founder, Advisor Global Media

 

We had just moved into a brand new neighborhood.

My husband and I had worked hard for this — saved carefully, planned patiently, dreamed of a backyard where our children could run freely instead of a patch of grass in front of someone else’s building. We had a son named Michael and I had just given birth to our daughter Alexis. This was the house we had been building toward.

I did not know a single person on the street yet.

That afternoon I took the children and the dog out for a walk. The sun was out. The neighborhood was quiet. Michael walked beside me and Alexis was in the stroller. We were exactly where we were supposed to be.

And then I felt it.

The aura.

That particular feeling that people with epilepsy know with a dread that is impossible to describe to anyone who has not experienced it. A warning that arrives seconds before the body stops cooperating. Enough time to know what is coming. Not enough time to stop it.

I fell to the ground on the sidewalk.

The back of my head hit the pavement. I did not know it at the time but a small cut opened and began bleeding. Head wounds bleed profusely — something I would only understand later. In the moments after a seizure the world comes back slowly. I was confused. I could feel something warm but I did not connect it to blood. I saw specks on my arm and could not quite understand what they were.

Slowly I came back to myself.

In a few minutes I would be fine. I knew that. I had been here before.

But my children were standing on that sidewalk. And I was their mother.

 

The Door I Did Not Know I Should Not Knock On

I made a decision that made complete sense to me in that moment.

I knocked on my new neighbor’s door.

I thought I was being responsible. I introduced myself calmly. Explained I had epilepsy, had just had a seizure, and would she mind if I sat down for just a few minutes.

Her mouth dropped open.

I could not understand why — until I followed her eyes.

I was covered in blood.

Not a little. Not a trickle. The kind of bleeding that looks alarming to anyone who does not know that head wounds look far worse than they are. I had blood on my face, on my arms, on my clothes. I had knocked on a stranger’s door in a brand new neighborhood and introduced myself — not realizing I looked like something from a scene no one would ever forget.

My husband rushed home. I was taken to the hospital. They put a staple in my head and the bleeding stopped immediately. By the time we arrived I already felt fine.

 

What I Saw in My Children’s Eyes

It was not the seizure that stayed with me.

It was the look in my children’s eyes.

Michael and Alexis standing on that sidewalk. Watching their mother on the ground. Not understanding what was happening. Not knowing if she was going to be okay. Carrying something in their small faces that no child should have to carry — the particular fear that comes from watching a parent be vulnerable in a way they cannot explain or fix.

That look broke my heart in a way nothing else had.

I had survived a coma. I had lost my independence for years. I had been stepped over and fired and rebuilt myself from nothing. None of those things had broken me the way that look did.

Because those things had happened to me.

This was happening in front of my children.

 

The Floor and the Stick Figures

That night I sat on the floor with Michael and Alexis.

I could not control my epilepsy. I could not promise them it would never happen again. There was so much I could not give them.

But I could give them understanding. And I could give them courage.

So I drew stick figures.

I drew Mommy having an aura. I showed them what my eyes look like when a seizure is coming. I walked them through every stage of what happens — what it looks like, why it is not as scary as it seems, how the body resets itself, how I always come back. I showed them how to call 911. I told them they would be so brave for knowing what to do.

And I watched something shift in their faces.

The panic left. The helplessness left.

Understanding had replaced it.

 

What I Did Not Know That Night

I did not know, sitting on that floor with my stick figures and my two children, that I was writing a book.

I thought I was just being a mother. Taking something frightening and making it smaller. Something my children could hold in their hands instead of carry silently in their hearts.

Years later those stick figures became My Daddy Has Epilepsy and My Mommy Has Epilepsy — published children’s books sitting in clinics and libraries and living rooms where other parents with epilepsy were trying to have the same conversation I had that night on the floor.

 

What My Children Actually Saw

I used to worry about what my children had seen over the years.

The seizures. The fear. The limitations. The worry in their eyes when I was quiet. My daughter Alexis rushing to my side any time I seemed lost in thought — Mommy are you OK are you OK — even when there was nothing to worry about.

I understand now that what they also saw — what perhaps they saw most clearly — was something different.

They saw a woman who fell and got up.

They saw a woman who sat on the floor and drew pictures instead of giving up.

They saw that it is possible to build a life that is full and meaningful and loving even inside circumstances you never chose.

I could not have taught them that in a classroom.

The sidewalk taught it. The floor taught it. The stick figures taught it.

And I am grateful — in the complicated hard-won way you can only be grateful for something that cost you something real — that they were there to learn it.

If you are a parent navigating a chronic illness or a challenge your children have witnessed — I want you to know this. You do not have to be perfect to be their greatest teacher. Sometimes the fall itself is the lesson. And what you do next is everything.

 

If you are a parent navigating a chronic illness or a challenge your children have witnessed — I want you to know this. You do not have to be perfect to be their greatest teacher. Sometimes the fall itself is the lesson. And what you do next is everything.

 

Read more of my story: staceychillemi.com/my-story

Book a free strategy call: calendly.com/carecoachingonline/booking-link

 

Stacey Chillemi is an award-winning podcast host, 20-time bestselling author, epilepsy advocate, and founder of Advisor Global Media. Featured on ABC, NBC, CBS, and five times on The Dr. Oz Show. Her podcast reaches 1.3M+ listeners worldwide and won the NYC Podcast Award for Best Host.

Explore how we can work together: staceychillemi.com/work-with-me