The Mental Load of Always Being Ready for a Seizure

Before we leave the house, there is a checklist constantly running through my head:

• Rescue medication? Check.
• Is it where I can get to it quickly?
• Does whoever is with Evely know where it is?
• Do they know what her seizures look like?
• Do they know when to give her medication?
• How far away will I be if something happens?

Most people watching us walk out the door would never know this conversation is happening inside my head. They would simply see a mother gathering her children and their things before leaving the house.
But this is part of parenting a child with epilepsy.

Even when everything is going well, some part of my brain is always preparing for what could happen next.

The invisible weight of being prepared

There is a mental load that comes with epilepsy that I don't think we talk about enough.

It isn't only the seizures themselves. It's knowing that a seizure could happen. It's making sure rescue medication isn't expired. It's remembering to pack it even when you're only going somewhere for a short time. It's explaining your child's seizure presentation to someone new. It's thinking about emergency plans when traveling. It's waking up during the night and checking on your child.

For our family, there is another layer because Evely was born with bilateral anophthalmia and is completely blind. Her seizures haven't always looked the way people expect seizures to look. Over the years, I have had to learn her individual signs and become deeply attuned to subtle changes in her body and behavior.

That knowledge is empowering. It is also heavy.

Because once you know what you're watching for, it can be difficult to ever completely stop watching.

Handing over care means handing over trust

One of the hardest parts for me is allowing someone else to be responsible for Evely.

For another parent, leaving their child with someone might mean explaining bedtime or where the snacks are. For me, there are additional questions:

• Do you know what her seizure looks like?
• Do you know where her rescue medication is?
• Will you recognize when something isn't right?
• Will you know when to call me?
• Will you know when not to wait for me?

Even when I trust the person caring for her, my brain doesn't necessarily understand that it is off duty.

That is one of the strange things about caregiver hyper-vigilance. Your body can leave the room while your mind stays behind.

Preparedness gives us freedom

But there is another side to preparedness that matters just as much.
Being prepared allows us to say yes.

Yes, we can go on the trip.

Yes, we can attend the event.

Yes, she can experience something new.

Yes, someone else can spend time with her.

Yes, we can continue living.

I don't want epilepsy to make Evely's world smaller. I don't want every decision about her childhood to begin and end with fear of what might happen. I want her life to be filled with experiences, laughter, community, adventure, and the ordinary moments of childhood that have absolutely nothing to do with being a patient.

Being prepared helps me give her that.

Knowing we have a seizure plan doesn't eliminate my fear, but it gives that fear somewhere to go. Instead of allowing every "what if?" to become a reason to stay home, I can answer some of those questions with, "If it happens, we know what to do."

There is tremendous freedom in that.

And there is tremendous responsibility. Both can be true.

The things our children don't have to carry

Preparedness gives us freedom, but preparedness also has a weight.
I carry the rescue medication. I carry the emergency plans. I carry the phone numbers, instructions, medical history, contingency plans, and countless scenarios running quietly through my mind.

And perhaps that is one of the invisible parts of caregiving.

Sometimes we carry the weight so our children can carry a little more freedom.

I don't know if I will ever completely stop listening for the metaphorical alarm in the background. Epilepsy has made vigilance part of the rhythm of our lives. But I can keep reminding myself why I prepare so carefully.

The goal isn't to spend our lives waiting for the next seizure. The goal is to be prepared enough that, between those moments, we can live.