being a mom

My Son’s Seizures Don’t Define Him, But They Define Me

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mom-hugging-son-outsideWhen you arrive at the ER with your catatonic two year old his seizure will have stopped, so they will have you wait with everyone else.  By the time you are seen he will be moving again, talking, mostly to himself, so they will politely listen as you describe what happened. But then the nurse practitioner will tell you that seizures happen, usually not a big deal in children, does he have a fever? As though you are one of those people, the ones who come to the ER for everything and are wasting her time. She will tell you that your son is her third pediatric seizure patient of the night. And then he will start to shake right there on the white paper covered exam table and everything will change.

Owen wakes up some mornings and drags his right leg. This is how I know he had a seizure in the night. An MRI shows an area of damage. That is what we call it. It is about the size of a quarter, like there was a stroke in the distant past. Knowing this does nothing to change our treatment. Treatment does nothing to change the seizures. They continue, at least weekly.

When Owen is sick, he shakes. I am not supposed to be alarmed about this. It is normal.  So when he gets a flu bug and poops for a week, he also can’t stop shaking. He holds his hands together tightly to try to control them. We call these breakthrough seizures. With an illness, even with meds, his little brain explosions just go haywire. He’ll wail, “I’m shaking mom,” and give me the most pitiful look of fear and lack of control.

I picture the fuse box in one of my seedy college apartments. I opened it one day and a flame shot out. I was assured by the landlord that such a thing is impossible. Perhaps, but the tiny spark he says may have come out had the appearance of a flame. The electrical storms of epilepsy may be small, but I see them as a tiny spark that shoots out.

A seizure will start with just the right side of Owen’s body shaking. Then it generalizes or spreads, so his whole body is out of control. His eyes are open but he can’t respond; he looks trapped, scared, distant. This look is worse than the shaking. Worse than falling off the bunk bed ladder in the midst of a seizure and slicing open his forehead. Worse than the chipped teeth from falls. To see my son, my baby, my genius of a little person, stuck. This is the worst.

Many children have seizures when they spike a fever. That is scary but not epilepsy. Of the kids diagnosed with epilepsy, many grow out of it after a year. That is not my experience.  Many kids respond well to amazing medications. No such luck here either. Owen will start kindergarten in the fall, and I’m terrified. This year at preschool he hasn’t had a seizure yet, for which I’m grateful. I know his teachers are kind and capable. We have a plan in place.  Yet my stomach knots up when I think of him scared, confused, embarrassed, and without me.

His first seizure away from me, Owen was with my best friend—the woman he’d probably rather have for a mom. He’d been tired in the morning when I dropped him off, not wanting to do anything. My friend snuggled him on the couch and he started shaking.  She held him tight, since that’s what he likes, and just sat while it passed. He’s exhausted after a seizure. They spent the morning watching My Little Pony with no other concerns. I didn’t find out till later, when I asked specifically.  My friend didn’t want to tell me, knowing I’d worry. I cried when I heard—not fear or sadness but gratitude that Owen was with the best possible person for the situation.

There’s brain surgery to consider. Owen and I spend weeks in the hospital hooked up to the twenty plus electrodes to measure his brain waves, trying to catch a seizure and pinpoint its origin. There are horrible stories of something called Sudden Unexpected Death in Epilepsy. Who came up with such a name?  For every hundred thousand dollars in tests, we still have no answers.

I explain to my college students why my phone doesn’t get turned off during class, why it stays out on the desk. More than 300,000 kids have epilepsy in this country, most of them with parents who have to somehow go to work. The first year of seizures, I scaled back dramatically on all my work commitments, realizing that my brain was only working at half capacity. I’m back up to speed now, learning to trust and relax and let go after doing all that I can. Isn’t that what all mothers have to learn eventually?

So my son has epilepsy. Please don’t tell me horror stories from movies you’ve seen or someone you once knew. I’ll relive them all in my mind as I try to sleep. The sweetest response I’ve had, rather than fear, was from a woman at church. She came up to me, tears in her eyes, and asked me what I needed in this hard time. It was clearly from the heart. It involved no judgment or crackpot cures (I’m looking at you DoTerra representatives). She showed her love and concern in a brief moment that has stayed with me. I’ll always remember her for understanding that some things can’t be fixed but you can provide comfort and companionship.

(Photo: Shutterstock)