I had no idea what to do about my son’s epilepsy. Until he told me.

I want to tell you a story about a hard day, a girlfriend, and my cat.

But first: Promise that when I say ‘hard,’ you’ll take that with a grain of salt. Losing a parent is hard. Right? Stuff on the news is hard. Today was just a bump in the road. Remember that, as we go on this blogging journey together.

And remind me when I forget.

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Most days, Bunz wakes up before the alarm. “It’s time!” he announces in a booming voice loud enough to wake our downstairs neighbors. “I’m a Cheerio man! Ready for my CHEEEEERIOOOOS! Ok, Mama! O-KAY!”

The rest of us groan and grumble, but really it’s not a bad way to wake up.

This morning was different. The room was dark and quiet. Next to me, Bunz laid very still, staring at the ceiling. “Bunz?” I whispered. I shook his shoulder. “Bunz?” His eyes were open, but he wasn’t responding. “Come on, stop playing. Bunz!”

My heart was racing. Sometimes he’ll blink, then look at me and say something completely random about Mickey Mouse Clubhouse. But today he wasn’t daydreaming. Something was wrong.

Like nearly half of all kids with cerebral palsy, Bunz has epilepsy. He takes medication. Mostly it works. Sometimes it doesn’t. We’ve tried complementing Western medicine with everything we can think of – dietary changes, essential oils, chiropractic therapy, energy work, everything – but we can’t shake the seizure monster. The fucker just keeps coming back.

Bunz’ seizures usually unfold a certain way: He lifts his head off the pillow and takes ragged breaths. We turn him to his side. His face trembles. He drools. We stroke his back; tell him he’s doing a good job. He clenches and unclenches his jaw, a fist, a thigh. We tell him he’s safe, we’re right here. The trembling and clenching subside. We snuggle for a while. Help him to the bathroom. Get a drink or a snack. Change the pillowcase. Then, back to bed. Bunz lives to fight another day.

That’s the routine.

But sometimes Bunz’ brain says, To hell with routine! And goes into a static seizure that doesn’t stop. Once, when we were traveling, an ER doctor went through three different IV medications before one worked. That was a hard day.

Today he was breathing and his skin was pink. So I waited. Turned him to his side. Stroked his arm. No response. Just as I was about to get my husband from the shower, I heard a familiar sound: uneven breaths, chattering teeth. His fist clenched rhythmically around my finger. Warm urine soaked through the sheets. And here we go.

I gave him the emergency rescue medication, then waited. Still seizing. Five minutes passed. Ten. Waiting can make you crazy.

“Bunz!” I shouted, losing it just a little. Across the bed, Little Bear stirred. “Good morning, Mama!” He started jumping around, too close to Bunz and the wet spot.

“Hi love. Do me a favor and go tell Daddy to come here. Ok? He’s in the shower.”

Bunz wasn’t coming out of it. But he was breathing. But he wasn’t coming out of it. But he was pink. But he wasn’t coming out of it. Fifteen minutes passed. Finally I picked up my phone and dialed 9-1-1.

“Ambulance, police, or fire?”

“Ambulance, please.”

The frustrating thing is, this isn’t the first time this has happened. It’s not even the first time this year. And it’s only March. I’ve written before about my frustration with modern neurology and how remarkably few answers there are for kids with epilepsy. There should be an answer for Bunz. Someone should know what the fuck to do.

No one knows what to do.

In the meantime, we’ve been having a lot of hard days. Too many. Bunz has missed a lot of school. I’ve been missing a lot of work. But that’s ok.

The rest of the morning was a blur. We recognized one of the paramedics from a previous call. In January, he’d helped Little Bear get ready so he could ride with us in the ambulance. That morning I had insisted that my husband leave for the 2-day job interview he’d spent weeks preparing for. He didn’t want to go. Go anyway, I’d said. It was down to him and just one other guy.

That day, my husband cried as he stood at his car. We watched him through the back window of the ambulance. Little Bear and I waved until we turned the corner.

Today I remembered him standing there, and I tried not to cry. The new paramedic was flirty. I wanted to tell him to fuck off. But I think actually he was just trying to be nice. I was in a terrible mood and there was urine on my pajama pants. I held Bunz against my chest and stared out the window, watching the grey sky slip by.

On the way to the hospital, Bunz’ face relaxed. His thumb found his mouth. He was coming out of it. Sleepy but ok. My shoulders relaxed. I snuggled my son.

Going to the ER is always a bit like playing telephone. First you tell your story to the paramedics, who tell the triage nurse, who recalls the story to a resident, who reports it to the ER doctor, who discusses it on an actual telephone with the neurology consult. The next thing you know, someone comes in and asks you to sign a form declaring that your son is Juanita Olivera, age 12.

At some point during this process I realized:

  1. I didn’t have a wallet.
  2. Or house keys.
  3. Or a booster seat.
  4. Or a car.
  5. I was wearing blue disposable Hammer-style pants, and
  6. Bunz had urinated all over his clothes during the blood draw, so he was going to be sent home in a gown.

I don’t often ask for help, which I know makes some of you crazy. You tell me to ask for help and I say, yes, yes, I will next time, I promise. And then I don’t! But this time it was unavoidable.

So I called the only girlfriend who would truly GET how much this day sucks, without a lot of complicated explanation on my part. Which is a good thing because I didn’t feel like explaining. Please just pick us up, I texted. Her son is the same age as Bunz and has epilepsy, too. He goes to a private school where some kids’ families are forced to pay out of pocket for shadow aides. She’s worried that maybe one day they’ll be next. She’s mortified about the time we met up at the zoo and Bunz’ sheer exuberance triggered her son to full-out wail on him, but I love them even more because of that. Because there is no pretending that things are ok when I’m with her. It’s perfectly ok that things are Not OK. We can be Not OK together. And eat sandwiches and drink coffee and laugh. Or cry, depending. And there is nothing better than that.

On the ride home, we loved up Bunz. Her amazing son read us a book called Mr. Birthday. Later, alone, we talked about how I was Not OK. How I wanted answers. WTF? Why are there no answers? Do I have to do everything myself? The scientist in me thinks sleep-related hormones trigger Bunz’ seizures. Why is that so hard to figure out? Researchers should be on top of that. The clinician in her thinks that a magnesium overload was probably not to blame. I was worried we might have overdone it with Epsom salt baths and the Natural Calm laxative. But go light on the Epsom salts just in case, she said.

She let us out in front of our house. I carried Bunz inside. I wanted to put him in our bed because we have a video monitor set up in that room. But it was completely soiled. Urine had soaked through the mattress. I gave Bunz a snack, then tucked him into his real bed.

I went back into our room, stripped the sheets, and sat down on the corner of the bed. This life is exhausting. And overwhelming. And sad. I’m out of ideas. We didn’t give him chocolate. Or soy. He isn’t sick. Or dehydrated. He hasn’t had a seizure in a month. He’s been doing great. WTF. Just WTF, I said to God, the Universe, the Angels, Mother Mary, Jesus, anyone who would listen. I give up, I told them. I just don’t know what to do for him. What am I supposed to do? I need your help because nothing is working. I don’t know what I’m supposed to learn.

Our cat looked exhausted, too. She leaned her head against the doorframe as if to say, “I know. It does suck. You’re right.” We sat and stared at each other for a while.

Eventually, I heard Bunz call from the other room: “Mama!”

Crap. I didn’t know he was still awake. I stood up and wiped my eyes.

“I love you sixty times ZEEEEROOOOO!”

I peeked into his room. “Hey, Bunz. What can I get for you?”

“Just love me, Mama. Come!

Ah. Love him? Is that my answer, Universe?

I might be crazy, but in that moment, all I could think was

That’s the ONLY answer.

Just love.

Well.

That I can do.

10 thoughts on “I had no idea what to do about my son’s epilepsy. Until he told me.

  1. First and foremost you are an amazing mom. I don’t usually comment on articles but your life mirrors mine from several years ago. My daughter will be 15 this summer and we haven’t experienced a day like you described in almost 7 years. Taylor was born with brain injury but her sezures didn’t start till age 2. From then till age 8 is a fog. She began sleeping in our room with me “sleeping” with one hand on her chest because she always had seizures when she fell asleep or as she woke. They would last up to an hour and many times we wound uo in ER. Taylor had a vagus nerve stimulator implanted and has basically been seizure free since. I hope and pray you find answers and a solution.

    Like

  2. I just wanted to say thank you for sharing your experience. I am a mom of a sweet 3 year old girl who was recently diagnosed with epilepsy. We are searching for the right medication to keep her seizures in check while maintaining the brilliant sparkle in her eye. There is not a day since her diagnosis that I have not shed tears of worry for her future. When I read your story I found a bright spot that I haven’t seen since her diagnosis. In the face of so many unanswerable questions, I was reminded that all she needs from me is love. And like you, that I can do. Thank you so much and I wish you and your family so much happiness.

    Liked by 1 person

  3. Thank You! I emailed this to my husband’s epileptologist, she is going to reprint and place in the waiting room. Why didn’t you call? I am just too tired to explain why I am wearing hospital scrubs and J is in a hospital gown and a bath blanket, and I am carrying our clothes in a trash bag. Bumps in the road… check. Love, I am so there with you! Prayer and ice cream are my comforts in stress. Please write more! I am a writer and I have trouble expressing what you so clearly nailed!

    Like

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