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.

The other woman

Today I found an awesome kid-sized craft table for the boys’ room.FullSizeRender

Technically the room belongs to both boys. But no one sleeps there … and it’s full of toys that only Little Bear plays with … so let’s just be honest and call it Little Bear’s room.

A few weeks ago, Little Bear started crafting and just couldn’t stop. He’s still going strong, churning out 10+ pieces a day. And each one is so special: “Mama! Come look! I drew a mountain of all the numbers from 1 to 100!” I looked it over and marveled at the backwards 2s and the 39 inexplicably followed by 30, like the impossible stairwells in an M.C. Escher piece.

Some of Little Bear’s drawings are unsettling. Like tkitchen1his one, in which our house catches on fire and we have to live in a ‘kitchen’ (his brother’s word for ‘camper’) parked out on Kirkham Street.

Anyway, we’re running out of (a) space for him to create and (b) places to display his creations. Our dinner table doubles as Bunz’ homework area and Little Bear’s art studio.

So yeah. The kids need a desk.

Today was one of those days where I had a ton of work waiting for me, but nothing – nothing! – seemed more pressing than rearranging the boys’ room and creating space for the new craft table. God, how I love reorganizing!

In a matter of minutes (ok, hours) the room was completely transformed. A dollhouse and other toys from the living room were now tucked away in the bedroom, out of sight, out of mind (for me, anyway). I stood in the doorway to admire the new table, the tidiness, the everything-in-its-place-ness. What a sense of accomplishment! Excitement! Anticipation for them to come home and see!

And then, inexplicably, a wave of sadness. It’s hard to explain, but it’s like I was suddenly peering through a window into an alternate life. In the bedroom of this alternate life was Little Bear, an only child. I watched his shadow move through the room, working intensely at his table, playing pretend, laughing with his friends. So simple, so natural, so #everydaylife.

FullSizeRender(3)I realized I was seeing this scene though the eyes of another woman — the woman whose life this belonged to. I took a deep breath and noticed how this felt for her. I felt strangely light and carefree. I noticed that she wasn’t at all worried about the child at play. How lovely it felt not to be worried or concerned about the the next big thing. Maybe she had other worries in life (maybe not), but she felt bright and cheery when she considered the boy and his future. There was no need for concern here. Nothing was out of the ordinary.

In my mind’s eye, I took a step back and saw her standing there in the doorway. She had long, straight brown hair and wore a stylish dress. She looked polished, responsible, in shape, and organized. The very picture of adulthood.

Then I looked at Real Me, standing there behind her. I noticed my unruly hair, my clothes, the fatigue around my eyes and the heaviness in my heart. Oh God. Me.

What would this other lady think about Real Me? I was afraid for her to turn and see. Me, who is clearly not adult enough to have a neat and tidy life. Me, who has so much trouble brewing that I must have brought it all on myself. Ugh.

In the midst of my embarrassment, my mind flashed back to a writing class I took many years ago. A visitor from the New Yorker was reminding us that a good storyline always has tension. Without tension, your story is as bland as white bread, he reminded the class.

I looked back at Real Me and saw my life as a story in print. This is the story of a hellion, a warrior, a champion. This is the story of a woman who takes the bull by the (figurative) horns and fucking wins. She doesn’t let anything get her down — especially when it involves her kids.

And all because she had a freaking bull chasing her around in the first place. Dumb old bull, she might think to herself. But no bull, no fight, no victory. No tension. Bland white bread. End of story.

I turned and saw Real Me in a completely new light. Not as a failure but as a fighter – a woman with one hell of a story to tell. Tension? HELL YES. She deals with whatever life throws at her, which is probably why her hair always looks so crazy.

Will she win? Damn straight. Or she’ll die trying.

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(In which a tall, skinny, gorgeous lady presents Real Me with a bouquet of flowers for my birthday. I’m the one with a big blue belly, fluffy brown hair, and yellow sneakers.)