something hard

Why I (shouldn’t) worry

~ teambunz ~ 1 Comment

Bunz had a seizure at school the other day. He was wide awake at the time. That’s a first because until that day, he’d only ever had seizures in his sleep. I’m not sure what this means. My husband says it’s probably a one-time thing, nothing to worry about. But with men and epilepsy, there’s no such thing as a One-Time Thing.

I’m worried.

I shouldn’t worry. My friends tell me this and my husband tells me this. Science tells me this. If I had a psychologist, he might tell me this. But Bunz’ new neurologist doesn’t say not to worry. She doesn’t say to worry, either – it’s just that she’s more of a facts and strategy kind of woman. Always thinking about the next step. She told me the other day that even when she’s not working, she’s always thinking. Is thinking the same as worrying?

I want to be a facts and strategy kind of woman, too. But my heart keeps getting in the way.

When my husband tells me not to worry, I tell him I’m just Being Prepared. Because the best thing to do if you’re worried about something is to prepare for it, right? And then there’s no sense in worrying because you’ve already done everything you can.

Like that time I bought a hammer to keep in the glove compartment of my car. I wasn’t too worried about driving over bridges, but one day this woman’s car went off a bridge near our house and, miraculously, she survived. All of a sudden it seemed like a very real possibility that my car, too, could go flying off a bridge for no good reason.  And if that did happen, I’d better have a hammer so I could smash my car windows and swim to the shore, just like her. (I doubt I’d notice my tube top falling down, though. I’d just yell at everyone to ‘Call my family! Don’t just stand there!’)

But you know, there’s no sense worrying about these things because you’ll never get them right anyway. Chances are, you’re going to worry about the wrong thing. And while you’re busy doing that, something else will sneak up and smack you in the face. Like that hammer. I ended up getting rid of it because I started to worry about what might happen if the airbags deployed and a hammer came flying out of the glove compartment into someone’s face. Of the two possible scenarios, the airbag one seemed most likely.

Despite my Being Prepared, I’m always surprised by bad news. There’s always that split second of confusion before it sinks in. “What?”

The text message saying that Bunz had a seizure at school. “What?”

Death, disease, lost homes, lost children, terrible things happening to people we love. “What?”

I think it’s short for, “This is a joke, right?” Or “Man, I’ve been worrying so much about all these other things that this particular thing wasn’t even on my radar.” Or “How is it possible that only a second has passed but our lives are now irreversibly changed?”

When it comes to epilepsy, the worrisome part is not just that a seizure will start, but that the seizure won’t end. It’s slightly more complicated than just driving off a bridge. With epilepsy, it’s more of a waiting game.

The air is tense with waiting these days. I’m used to waiting at night, watching Bunz sleep in the video monitor. We’ve done this for so many years that we no longer feel anxious or agitated at night. Just watchful and alert. Ready to spring to action at the first sign of a seizure, even when we’re bone tired from the day. It’s our normal.

But lately the days are like nights, and this doesn’t feel normal at all. All the time, waiting for a seizure to start.  And despite this constant waiting, it always happens when we least expect it.

This morning we were sitting at the breakfast table, eating Kix and listening to Little Bear go on about LEGO Chima Lloyd. I saw Bunz grin as he picked up a LEGO Spiderman figure and opened his mouth to speak.

But instead of words, visible waves of flesh rippled across his throat and spread to his chin, pulsating through his lips and cheeks. A flash of surprise entered his eyes just before his pupils, too, got swept up in the terrible rhythm. I paused for a second (‘What?’) then gathered him up in my arms. Supported his neck, turned his head to the side. A toy with a dying battery … that’s what he reminded me of.

When he came out of it, he cried and begged me to take the seizures away. He got angry and tried to rip them out of his head, pulling out a few hairs instead. After the anger passed, he just seemed tired.

I hate to say it, but

Damn.

I’m worried.

IMG_4065-1.JPG

Losing control

~ teambunz ~ Leave a comment

Last night I was wandering down the produce aisle when my phone buzzed with a text from my husband: “4 min seizure. this sucks!”

Bunz is failing his meds.

He’s had seizures every night for the past week. And the ones we see are only the tip of the iceberg; eruptions from the electrical static always simmering in his brain.

Failing a medication looks messy and exhausting and frustrating. And it is. For everyone.

It looks like panic at 3am, as we reach through the darkness to feel for Bunz’ trembling face.

It looks like a child’s red-rimmed eyes and pale cheeks. He’s so tired.

It looks like a lady choking back tears at the grocery store, trying to hold it together over stacks of neatly bundled asparagus. Remembering her son playing schoolhouse with farm animals on the living room floor. The afternoon sunlight streaming through the windows as a tiny cow tumbled down the toy slide. Why did she wait so long to get down and play with him? Why did she say she needed to finish her work first? WTF is wrong with that woman?

This morning we drove across the city for a hastily scheduled appointment with his neurologist. For the first time since we’ve been coming here, the assistant didn’t lead us back to an exam room. She seated us in a conference room and asked us to wait a few extra minutes; the doctor was running late dropping off his kids.

I wondered about his kids. How it must be to have a home brimming with health and happiness. And a nice fat paycheck. All of this imagined, of course. Nobody’s life is perfect.

From a window overlooking the bay, Bunz counted one ship, two shuttle buses. One train.

The doctor came in. We looked at each other.

“So,” he began.

“Yes,” I said.

There was a silence.

Then, in what might be the most productive neurology appointment of all time, we scheduled a video EEG, a MRI, and a MEG to try to pin down the location in his brain where the seizures begin. We discussed the possibilities. Our new insurance provider will LOVE us, I thought.

The neurologist asked Bunz some questions; Bunz gave real answers. I felt proud, remembering a few years ago when Bunz didn’t understand the concept of a question – that you were actually supposed to respond. He’s come so far.

We must have seizure control, I decided.

We demand it.

After the appointment, Bunz and I sat on a bench outside the hospital and shared a blueberry muffin from the coffee cart. I told Bunz I was proud of him for working so hard, for learning so much and never giving up. Even when it’s not easy.

He nodded.

“I love you, too, Mama. Where are my Pop Chips?”

I drove him to camp. His beloved shadow aide, Leila, is gone for the rest of the summer and a new session starts today, so he has a different classroom. Change is hard on Bunz. “Don’t drop me off here!” he wailed, his lower lip trembling.

I left him on the playground.

He stood near the teachers and watched two girls play with the steering wheels on a play structure. When they walked away, he ambled over to take a look.

I watched him through the window. My stomach hurt.

When will this get easier?

FullSizeRender

Lessons my mother taught me through dying

~ teambunz ~ 3 Comments

I love to celebrate motherhood. Every single day. Isn’t it amazing? Aren’t our mothers just so strong and resilient and beautiful?

The formal date of celebration, though, is a little tricky. It’s exactly 1 month away and I’m never quite sure how to feel about it. You know, because some of us aren’t mothers. Or maybe we’re mothers who lost a child. Or children who lost our mothers. But we all have mothers, or did at some point. There’s always that.

This story is about my mother.

She’s gone now. But she lived once. She was a beautiful Italian woman with long dark hair and brown eyes. She had strong tan arms and painted scenes of barns and cemeteries and cornfields. Before dying, she held me in those arms and told me I was the wonderful, beautiful girl she always dreamed I would be.

That wasn’t so long ago. I miss her so much.

In life, my mother was a nurse to the dying. She often worked the night shift and would bring me a toasted blueberry bagel with cream cheese on Saturday mornings as I sat watching cartoons. She always told interesting stories about her work. So-and-so had died that night, she’d say, and what a beautiful thing it was.

The deaths she witnessed were spiritual, tragic, often joyful, sometimes angry. Some spoke to dead relatives before they passed, others reached their arms to the sky as they took their final breaths. Her stories would make you a believer. She wanted to believe.

My mother taught me many things in life – she taught me not to pick my nose or cheat at board games. She taught me to cook and sew and give handmade greeting cards. She taught me the meaning of unconditional love.

But the most valuable lesson she taught me while dying.

She died on a Friday morning in October, four years ago. Outside, piles of gold and red leaves covered the sidewalks. The sky was blue; the air was crisp and cold. Inside, she lay drowning in fear and discomfort. Her lungs paralyzed, her faith wavering. A woman from Malawi sat at the foot of her bed, reading aloud from the Holy Bible. I held my mother’s hand. What if this is all there is, she’d said a few weeks ago, her voice weak and hoarse. Each word was a struggle. She’d spent too many painstaking words that day telling me she’d realized it was easier to live when she was sleeping. Life was only hard when she was awake.

As she lay dying, her eyes connected with mine. I kissed her forehead.

This isn’t all there is, I whispered. I promise there’s more. Right now you have one foot in this world and one foot in the next. All you have to do is lift that foot and step over. I promise it will be there. Just let go …

When the dying take their final breaths, shallow gasps punctuate long periods of silence. The living hold their breath for a moment, too, wondering if that gasp will be the last. And then a sigh of relief as the wait begins again. As I listened and waited, my inner eye perceived a vivid ball of light over my mother’s left shoulder. It radiated joy and peace, confirmation that the next world had been there for her. She was gone. It was done.

Minutes later, a nurse quietly jotted down the time.

I didn’t cry. I felt like I should, but the tears wouldn’t come. Everyone grieves differently, I suppose. I grieved while listening to Duane Allman’s “Goin’ Down Slow” on repeat, staring at our bedroom wall. I didn’t like to come home so I shopped for new clothes and wooden train track sets for the boys and other things we didn’t really need. I remember one afternoon begging my husband to build train tracks with me on our living room floor. I took great comfort in avoidance, distraction, denial. She was out there, somewhere, still alive, just a phone call away. Not to worry, not to worry.

The first few years after my mother died, I dreamed almost nightly that we were having lunch or sipping Dunkin’ Donuts coffee or cooking dinner or making soaps. Every night we melted glycerin and carefully poured it into the molds. We popped in another videotape, a comedy this time. We laughed and talked about things that were happening in my life. Have you ever heard of Ghost pepper, I asked her one night as I dreamed. Marcus says it’s the hottest pepper in the whole world. We tried it and it wasn’t that bad. Can you believe that? Every night she was healthy again, in remission from a disease that in reality always kills. No one survives ALS. But every night in my dreams, she beat the odds.

One night, I dreamed I was driving fast along a windy country road. Trees filled with amber and gold leaves lined the road. I pulled into a gravel driveway and entered an old house. I didn’t recognize the house, but somehow knew I would find her there. Hours after I woke, I could still feel the comfort of her strong arms embracing my body; her belly jiggling as I shook with the inconsolable grief that never seemed to find its way into the daylight.

Only last year, at a meditation workshop, did it finally dawn on me that my mother is gone. Like Gone gone. Why this realization came more than three years after her death, I don’t know. Maybe that’s how denial works. But as I entered the vast spaciousness of meditation that day, the truth came booming out of nowhere. A sudden, awful shock. I think it was meant to come gently, but it felt like a train crash. I grieved hard that day. I cried loudly and messily. I ran out of tissues and started on the toilet paper. It felt out of place and liberating to grieve after that much time. It was a good thing.

Since that day, she’s only visited me a few times in my dreams and never as the woman she once was. One night, I dreamed we were debating what it means when people say that life is a journey, not a destination. What is that supposed to mean anyway, I said to her in my dream. I always took it to mean that you should stop to smell the roses and all that.

But my mother responded that to journey means to surrender. To surrender the desire to win, to be perfect, to be the fastest or the best. If we’re all floating in a sea of emotion, she said, then to journey through life means to feel all of those emotions without denying yourself the experience that each one brings. To feel pain, regret, doubt, love, joy, and remorse all at once, and to learn from them. To feel elated about your child’s faltering first steps in the same moment that you feel heartbroken about your mother’s faltering final steps. To let yourself bob along in the gentle sea of life with trust instead of fear. To be. Only then can you reach your destination.

The journey matters, I heard her say before I woke up.

Don’t deny yourself the journey.

Happy journeying. 🙂

402348_10101657517463531_1178732095_n

Scattering her ashes at sunrise on Christmas Day.

Below: A poem found tucked into her Bible.

407631_10101657520642161_1284252454_n

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

~ teambunz ~ 10 Comments

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.

FullSizeRender(1)

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.