What I want you to know about my child

My son, Bunz, does an awesome job of enjoying life while navigating two disabilities: cerebral palsy and epilepsy.

11782266_10107302601360151_1597732830068564588_oIn his 7 years on this planet, we’ve met with developmental pediatricians, neurologists, epileptologists, physiatrists, neuropsychologists, school specialists, physical therapists, occupational therapists, speech therapists, feeding therapists, gastroenterologists, therapeutic horses, aquatic therapists, music therapists, craniosacral therapists, myofascial therapists, chiropractors, Feldenkrais and Anat Baniel practitoners, surgeons, podiatrists and others to help him navigate these challenges.

They all ask the same thing: “What do you want me to know about your child?”

“What do you want me to know about your child?”

“What do you want me to know about your child?”

“What do you want me to know about your child?”

Well, what I really want you to know about my child is not relevant to the task at hand. But then again, maybe it is. It’s relevant to Bunz, after all. To his life and perspective and understanding of where he fits in this world.

Depending on how you think about it, What I Want You to Know About My Child may have nothing to do with the care you provide him in this moment. Or it may have everything to do with it.

Because what I want you to know is this:

That while my child fixates on your overgrown beard during our consultation, deep down he’s sensitive and he’s listening. To us. To all the things we’re saying – in front of him, right now – things he can do or can’t do, things he struggles with or finds challenging. I want you to know that when you say he has good muscle tone, he wears that routine observation like a badge of honor and asks me, on the way home, what it might mean. Whether there’s a shred of something to be proud of in those words. Because like all of us, he wants to be great. He wants to belong.

He wants to be enough.

I want you to know that some of the things you observe to be difficult for my child are the very things he’s worked hard to improve on for a year or sometimes more. And so I want to tell you – very quickly before you say anything to crush his sense of accomplishment – that he’s come a long way. Even though we all recognize he’s not there yet. Even though he might get there eventually, or he might not. But I want you to know that for kids like Bunz, the way from “here” to “there” is a progression of baby steps. And he is continually taking those steps.

I want you to know that even though we’re here to talk about all the things that are difficult for him, much of his life is spent being good at things. He’s good at math, reading and spelling, for example. He’s good at shaking hands with elderly people in nursing homes and looking into their eyes with a sincerity and warmth that belies his age. He gives amazing hugs and plays songs by ear. He’s good at remembering birthdays, noticing new haircuts and telling clever jokes. He’s good at making strangers laugh and bringing people together and diffusing tense situations. He has no ego and so he’s good at living his higher purpose.

I want you to know that whatever worked for the other kids probably won’t might not work for Bunz. It takes creativity, music and a bit of a smartass personality to get him on board with whatever program you have in mind. I know this complicates things. Bunz pushes all of us to rise to the challenge and I guarantee that if you can make this work, you’ll be a more resourceful practitioner for it.

I want you to know that Bunz will talk about you long after we get home. A LOT. Mostly he will ask us to invite you over for dinner and then insist that you move in. But sometimes he will inform us that you had food stuck in your teeth. I’m sorry in advance for those times.

And finally, I want you to know that this kid has big dreams. That the first few times he met children who were nonverbal, he was visibly and dramatically shaken – he wanted so badly to help those children speak. One night a few weeks ago, he announced in a sleepy voice that he wants to be a “speech teacher” so he can help his friend Ben and every child learn to speak. But also, he told me as he drifted off to sleep, he still really wants to be a policeman … and so maybe he’ll drive his police car fast to the school to teach those kids.

I want you to know these things so that we can help my son — and other kids like him — understand with certainty that their challenges don’t define them. That challenges evolve and change and sometimes even fade away, but character and strength remain.

I want you to know that my son is a character, for sure. But mostly, I want you to know that he is strong.

And he is Enough.

11856468_10107304729076191_7036420689511652211_o electroencephalograming #likeaboss

Lessons my mother taught me through dying

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.

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.

Why I (shouldn’t) worry

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

Lucky Number Seven (Happy Birthday, Bunz!)

Today, my baby boy turns seven.

Seven!

Seven years.

Wow. I swear Bunz was just a baby, like a minute ago.

Random little things bring me back to the day he was born. The smell of medical adhesive tape. Extra-crisp apples. The traffic light at the corner of Cooks Lane and Edmonson.

The morning Bunz was born, my husband and I stepped through a doorway into a new world. We didn’t realize it immediately, but over time it became apparent that a profound change had taken place. As Bunz grew from an infant to a toddler to a child, my husband and I grew into new versions of ourselves. Kind of like those born-again Christians, but without the religion. Just regular born-again people.

The transformation looked a little like this:

Before

Before we had kids, we had a cat named Kitty Little. For the first 7 years of our married life, she was our baby. One morning I dropped her off at the vet, planning to pick her up that evening. Except! The vet called me around lunchtime to say that Kitty Little’s blood glucose level was a little off and she might have diabetes. Diabetes! I hung up in tears and left right away, jogging home to grab my car so that I could collect my sick kitty. How awful! Diabetes?! What could be worse??

During

The days and months after Bunz’ birth were kind of like the “during” phase. Bunz started having seizures a few hours after birth, and the long list of things that could possibly be wrong with him included viral infection, bacterial infection, lung injury, bleeding in his brain, stroke, hepatitis, genetic or metabolic abnormalities and some other things I can’t recall. He had two spinal taps and his IVs were loaded up with medications for every possible issue, until one by one those issues were ruled out and a brain MRI suggested he’d had a stroke.

During these first few days, I refused to stay in my hospital bed and kept trotting off to visit him. I had no patience for wheelchairs or rest and, as a result, ended up with a nurse of my very own. When my nurse asked what she could do for me, I very bluntly informed her that the only thing anyone could do was to make my baby ok. She couldn’t do that, and anyway Bunz had to transfer to a children’s hospital, so we left. As we drove behind Bunz’ fancy NICU-on-wheels to the new hospital, I realized for the first time that my belly was empty and so were my arms.

Ah… the “during” period was rough. So much anger, guilt, fear, shame, regret. How I wished sometimes that Bunz was a cat with diabetes!

After

But over the years, we’ve gradually entered an “after” period. Not in the sense that the hard stuff is over — there are still days dominated by fear, anger and frustration. There are still things to worry about, things to struggle with, things to fight for, things that are unfair. It’s not fair that Bunz has a standing request to wear headphones the next time he rides in an ambulance or that his younger brother, at age 5, already knows how to wait first for the fireman to come to the door, then the paramedic. It’s not fair that life is complicated for them.

But the “after” period is all about realizing that life in general is not fair, and that’s OK. Because that’s How It Is. Life is unfair in so many ways for so many people, and this just happens to be our own personal brand of unfairness. In our growing, our transformation, we’ve glimpsed a rawness to life that’s often overlooked when everything is safe and warm and okay. At first the rawness seemed tragic. But over time we’ve come to realize that the rawness is amazing and beautiful because it clarifies what’s truly important in life – not competence, not speed, not winning, not being right all the time or even being seen. What’s important is experiencing, surviving, loving. Before Bunz, my husband and I thought we knew love. We thought we understood what it meant to trust.  Turns out, we had no idea.

In the past seven years, we’ve felt like the most powerful versions of ourselves and the most powerless.

We can do nothing.

We can do anything.

He’s taught us so much.

1931086_820462434561_3479_nAnyway.

All of this is to say that today is Bunz’ seventh birthday and he could care less about how he’s inspired and transformed his family because there’s cake! And presents! He can hardly wait!

CakeSo without further delay,

Happy birthday, Bunz!!

😉

LeifBday2015124 LeifBday2015161

Sometimes, you just need to drive

Last night, I received some heavy news: the Valley Fire, which broke out in Northern California on Saturday, has destroyed a huge swath of land — 61,000 acres so far — including a beautiful retreat called Harbin Hot Springs that brought solace to so many people, including my husband and me.

The news coverage is awful. An entire town burned to the ground within hours. Homes, cars, memories; all of it gone. Just … wow.

My first reaction was to mourn these losses. And not just the losses from this wildfire, but all losses, everywhere. It’s all awful. My god.

But in the midst of my sorrow,  I read a quote from a former Harbin resident in the newspaper:

“We’re really blessed,” Hamilton said. “There’s no damage to the springs and pools. That’s the essence of what Harbin is.”

We’re really blessed, he said.

The place is burned to the ground and this guy — this Hamilton — feels really blessed.

WTF.

At first, I didn’t like Hamilton very much. I didn’t understand him. But then I thought … you know what? Actually, Hamilton makes a good point. We are blessed. We are blessed not because of what we’ve lost, but because of what we have left. We’re blessed because with that terrible destruction comes the gift of renewal.

The more I think about Hamilton’s words, the more I realize how the theme of destruction and renewal applies to my own life. This summer when Bunz lost seizure control, it seemed like our lives were burning out of control. It felt like there was no way to escape, no evacuation route. But that period of declining health — painful and frightening as it was — brought forth new strategies and tests and options. We never expected that a few months later we would dare to fall asleep on the couch one night, Bunz’ video monitor left unattended on the floor.

Ironically, when my husband and I have felt utterly burned out and torn down over the past few years, we’ve occasionally given each other permission to evacuate the everyday wildfire.  To get in the car and drive. Which means, of course, that one partner stays home with the kids all weekend while the other partner luxuriates in Harbin’s hot springs. But believe me, sometimes you just need to drive.

So in honor of Hamilton and renewal and the cleansing power of fire, I’d like to share the story of my  first visit to Harbin. Here’s to rising from the ashes!

(Caution: This essay may not be appropriate to read with your kids or at work.)

Out-Hippied at Harbin Hot Springs

January 15, 2013 at 10:55am

It was a Christmas gift from my husband: two nights and three days at a spiritual retreat center in Northern California. No kids, no family. Just me. I’d never heard of Harbin Hot Springs and hadn’t the first clue what it was, but the idea of running very, very far away sounded great to me. Besides, my husband had been there a couple of months ago and couldn’t stop raving about it. “I camped on a stream! My tent was literally right next to the stream. It was so relaxing,” he kept saying. He mentioned nothing about the hot, naked women. He did mention the nice library. Oh, and the meditation room. And the food in the restaurant was pretty good, he thought. “Also, you can sit in the pools at night and gaze up at the stars.” It doesn’t get better than that.

So off I went, on a Friday afternoon. I pulled through the front gates as the last rays of sunlight warmed the valley walls. The office lady seemed like she could use a weekend away, too. She asked a ton of questions without waiting for my replies. Maybe I was the millionth person she’d checked in that day, or maybe she just didn’t like people. The rules were simple, she barked: No phones, no cameras, no candles, no glass, no sexual activity, no alcohol, and no drugs.

Places that ban cameras always inspire me to write. I need some way to record the moments—photos, stories, whatever—so I can look back and remember. That’s what I’m doing now.

“And just so you know,” she said, pointing up the hill, “there’s a co-ed changing room, and about 99.9 percent of the people up there will be naked. If that’s a problem for you…” Her voice trailed off and she had an expectant look. Probably she’d noticed my driver’s license. Those East Coast people are so uptight. Something shifted in my chest, but I stared back like ‘What, lady. What.’ Because I was a Spa World veteran. Nothing could shock me. I took the keys and left.

Clearly, I was unprepared for what happened next. I mixed up the location of the parking lot and drove the wrong way on the road, pulling to a stop outside the outdoor pool area. It was breathtaking. A large square warm pool sat under the stars. Next to it, a candle-lit cabin with stained glass windows housed the hottest pool of all. A sign at the door read, “Silence is Sacred.” That’s when I noticed the penises.

Never in my life have I seen so many penises in one place. These weren’t the guys that hang out at nudie beaches. No horny old men with leathery tans here. Every last one of them looked like they could be in the next issue of Runner’s World.  Oh my.

After checking into my room in the Domes, a series of ball-shaped buildings on the top of a mountain, I ventured back to the pools. In all honesty, I love being naked. Spa World is my favorite place in the entire world. But I must have been too busy thinking about what a meanie that office lady was to understand what she meant by “coed.”

Just so you know, a co-ed changing room is a room where all types of people—men, women; young, old; fit, fat; gay, straight; executives, deadheads—are in various states of nakedness. It means you will sit down on a bench next to a lady with breasts that belong on the cover of Maxim and realize that you’re staring directly into the pelvis of a frat boy with gelled up hair standing at the next bench. It means you will undress and then—and then—you will STAND UP and you will WALK TO THE DOOR. That is what it means. Just so you know.

But wait, you ask, what does it mean to enter a pool where 99.9 percent of the people are naked? Well, I’ll tell you. It means that after a quick rinse under the outdoor shower, you will hang your towel on the rail and strut confidentially down the pool steps into the warm water, hugging your breasts because that Northern California air is COLD. It means you will weave between silent spooning couples to the center of the pool while trying to look somewhere, anywhere, to avoid sexually harassing someone. Everywhere you turn, there will be floating breasts and bobbing penises. And once in a blue moon you will see a lady wearing a one-piece black swimsuit, wondering how the hell she got mixed up in this crazy shit (I saw her; she looked stressed).

Then a woman smiled at me and I figured it was okay to just BE. And it was. Various people made eye contact but not once did I feel ogled or slime-balled. There certainly were a lot of penises floating around, though. I’ll give you that. But they were well behaved.

Later that night, I went to the massage building for an aromatherapy body scrub and Shiatsu massage, included in my Christmas gift.  My masseuse was a lady—tall, blonde, and German—and she was clothed. “Good thing you come to us in the winter,” she said.“We are so much friendlier now. In the summer, it’s a real meat market.” With that, she went to work. The coffee buzz I’d been carrying around since morning dissipated within minutes and I felt incredibly at peace. At some point it occurred to me that even with the naked people straddling each other in the pool and all the penises bobbing around, this spa seemed pretty modest compared with the few Korean spas I’ve visited. When you get a body scrub at Spa World, for example, you’re splayed like a wet fish on a tabletop and dunked with a bucket of water. On either side of your table there are five or six other tables with women-fish sliding around on top. There are no sheets or towels to cover your private parts—the spa workers spread your legs like they don’t care and scrub every last part.But here at Harbin, there was a nice little towel to cover my lower body while she worked. How very American!

After the massage I drifted back to the Domes and got all cozy in my bed. I was just drifting off to sleep when my pillow started to move. There were moans, and rhythmic thuds against the wall behind my head. Earthquakes do not do this. But couples who just attended the Tantric massage workshop do. I was so tired that it didn’t matter and I slept until 3am, when I thought Little Bear was standing by my bed asking to get in. I opened my eyes, ready to tell Little Bear to go back to his own room. But I was all alone and the room was quiet. I’ll admit, I was a little homesick right then. But that morning when I slept in, everything was ok. 😉

Saturday

When I walked down to the market area to have breakfast, a silver-haired guy was standing outside the door of the restaurant, waiting for it to open. “Hey, happy New Year!” he said, turning to greet me. “Thanks, same to you!” I replied. We looked at the bulletin board and made small talk about the day’s scheduled events while we waited. “I’m going to check out that Kirtan later today,” I said. “Yeah, I’ve heard it’s pretty good,” he said. “Hey! Happy New Year!”

My new friend hailed from Northern CA. “The pot capital of the world,” he said with pride. I was fortunate enough to meet someone who owns a 20-acre farm that provides a lot of the medicinal marijuana for the state of California. When I mentioned Bunz, and cerebral palsy, and epilepsy, and how we’re staying on top of cannabis research in case that ever becomes an option, he started going on about cellular crosstalk and signaling cascades and apoptosis and how all these things are affected  by the various concentrations of THC, CBN, CBD, CBG, etc. You don’t often meet people at naked retreat centers who can speak intelligently about both marijuana and myelin sheaths, but this guy was the Real Deal. Then I found out he has a master’s degree from UC Berkeley. So there you have it: The billboards should have a photo of this guy holding his diploma against a backdrop of expansive pot fields.

We were sitting there having breakfast when he started to tell me about the aliens. His house is on a hill, he said, and when he sits outside at night to shoot off his gun and guard his crops, he sees all kinds of paranormal activity in the sky. The stars move, for one thing. “I had my buddies stay there last night,” he said. “I called them this morning and said, ‘Did you see it? Did you see the stars move?’ And they said, ‘Yeah, man. We totally saw it.’ They totally saw it, you know?” Sometimes strange orbs hover in the sky above his fields. One night he woke up and his room was filled with a red glow for no apparent reason. Another time, a triangular cloud slowly made its way across the sky on an otherwise clear day. That’s when he began to suspect the government. He saw a similar aircraft on the cover of Popular Mechanics. But the orbs he’s not so sure about. Those are probably from the mother ship.

After breakfast, I headed to a yoga class in the Temple. And after that, I headed to the private pool at the Domes for my second gift from my husband: an underwater shiatsu massage. According to the brochure, WATSU®, which was originally developed at Harbin,“combines stretches of Zen Shiatsu and the element of water to create an extraordinary experience. Being gently floated and stretched in a warm pool can be deeply moving and relaxing.” But what they don’t mention in the brochure is that the masseuse will be a man, and he will be naked.

Let me tell you: You have not lived until you’ve stood at the edge of a pool, completely naked,about to step into the water to be massaged by a naked man that you’ve never met. He was standing there in the pool, smiling up at me, his penis literally bobbing up and down below the surface. “I forgot my towel,” was what I said. I’m not sure why I said that. But it was true: I’d brought a bag containing everything but the one thing I needed most—a towel. And it was chilly out there.

“I’m not sure what to tell you,” he said. Those California people. So straightforward. He wasn’t being rude—he literally did not know what to tell me. There were no extra towels. Just the pool, a shower stall, and two naked people. That was it. So I got in and swam over, as gracefully as I could.

“So was there a reason you signed up for the off-the-body energy work instead of the hands-on water massage?” he asked.

“Um… ?” (Had I?)

“Is that what you signed up for?” (M? What did you sign me up for??)

“To be honest, I’m not sure. This was a gift from my husband. But whatever you usually do is fine.”

As it turns out, he usually prefers the hands-on option.

“Ok, I’m going to put my arm around your shoulders and lean you back to see how you float.” I leaned back and immediately felt the sliminess of my skin against his arm. “Yeah. I’m going to need you to go shower and rinse off all that lotion. Otherwise I’m going to drop you like a greased pig.” OMG. HOW EMBARRASSING.

After a quick rinse in the shower (so chilly! no towel!), I hopped back in the pool. I closed my eyes and found that it was surprisingly easy to relax. I tried not to think about the penis bobbing beneath me as he supported my head and swirled my body through the water, massaging tissues in my back that I didn’t even know existed. It was honestly the best massage I have ever received. Hands down. No question about it. WATSU® is some pretty powerful stuff.

He told me I’d know when the session was over because I’d feel the side of the pool against my back and the floor against my feet. “At that time, you should start to come back to the present so that you can support your own body,” he said.  That just made me want to stay in the present and keep peeking out to make sure we weren’t near the edge of the pool because it felt so incredibly good. Thank you, M!!!!

That evening, I checked out an event called ‘Quantum Light’ in the Temple. I wasn’t sure what to expect, but after being at Harbin for a full day, I was pretty sure it would be interesting.

WAS IT. It was like a Kirtan (call-and-response chanting/singing) but the emphasis was on breathing. Deep inhales that fill your entire body, followed by quick exhales. And repeat, in a fluid cycle. The excess oxygen was supposed to feel exhilarating, but I felt a little lightheaded. Everyone else seemed to enter an ecstatic state. Imagine an evangelical tent revival held at an insane asylum, where they had double-booked a pagan ritual. There you have Quantum Light. A few people were rocking back and forth and moaning, another was giggling hysterically, a man was sitting cross-legged on the floor and whipping his upper body around in wide circles, and the entire room sounded like they were about to reach orgasm. Once again, I had been out-hippied.

The chanting was nice, though. And no one had sex against the wall that night. Bonus!

Sunday

After the day I had yesterday, I wasn’t sure there would be anything left to write. I was wrong.

Before sunrise, when the trees were still black against the pale sky, I slipped into the Domes pool and looked out over the valley. For the next hour or so, I floated on my back and watched the world wake. When other people began to make their way down to the pool, I toweled off and headed to the market area for breakfast.

On my way through the valley, I passed a stone-lined labyrinth in a field. In the center, a pile of offerings from the natural world: pine cones, stones, shells, pieces of wood, a few tin bottle caps. I stepped in and started walking the path to the center. As the first rays of sun rose above the tree line, I felt someone watching me. Turning back, I noticed three deer standing about 10 feet away, bright-eyed and curious. The one in front looked at me with so much love in her eyes, like she had found her long-lost friend. I smiled back, overflowing with joy and awe. She ran toward me, stopping almost an arm’s length away. I stood there, frozen in place, hoping I hadn’t gone off my rocker enough to get mauled by a deer. But with one last look, she stepped around me and continued on her path. Her friends followed. Later, randomly, I learned that the deer symbolizes the heart chakra. Coincidence? You decide.

I kept walking through the labyrinth, thinking about how it resembles the journey of life. Isn’t it something that you can approach the center of the labyrinth—the goal—without quite reaching it, and then get swept farther away. You can get so close that it’s tempting to step off the path and touch the center. But just as you consider doing this, the path takes you in another direction. It’s not the right time. As I continued walking, I noticed that some areas of the path were cold and dark, not yet warmed by the sun. A few paces forward and the ground was once again blessed with an abundance of light and heat.

Suddenly I was there, in the center of the labyrinth, facing the pile of offerings. A piece of bark reminded me of the face of that deer. I looked down at the ground, wishing I had something to offer, but nothing seemed right. Suddenly I heard a crash on the hill behind me. I jumped, expecting to see a falling tree limb. Instead, the biggest, roundest pine cone I have ever seen bounced down the hill and landed a couple feet away from me on the path. A squirrel snickered at me from high up in the tree. I walked over to pick it up; it was so large that three of my size hands could have wrapped around it. Fresh sap pooled like hot wax at its stem. Such a magnificent smell. I called in my soul to come and see.

I sat in the pools again later that day, not worrying about where my eyes wandered because I was lost in my own thoughts, marveling at the abundance of life.  Whatever challenges I face, whatever stressful things happen, I choose to be here.

I choose this life.

Harbin1

harbin2The deer looked at me from this spot.

harbin3The offering. My husband later pointed out to me that the pine cone is an ancient symbol for the third eye, the gateway to the higher self or soul.

Footage of this weekend’s fire damage can be viewed at: http://www.sfgate.com/news/article/Harbin-Hot-Springs-ravaged-by-Valley-Fire-6503417.php

1984 vs. 2015: Evolution in action

In 1984, I was 5 years old. I wore cowboy boots, had red curly hair and hated riding the school bus because the big kids taunted me with songs from the movie “Annie”. My favorite things to do included shooting my pop gun, smoking candy cigarettes and chasing imaginary bad guys through the fields with my best friend, Josh. I knew how to ride a bike and steer our old 1970 Ford truck, but I couldn’t say the alphabet without singing it and I could not, for the life of me, tell my left from my right. That was me at age 5.

Things have changed since then.

I’m not talking about how I grew up to be a nonsmoking, peace-loving, dress-wearing city girl who would die a little inside if her sons went around shooting off pop guns and smoking candy cigarettes.

I’m talking about what it means to be a kid these days. It’s been on my mind because our typically developing son, Little Bear, is 5 years old and just started kindergarten. I’ve been casually observing him and his friends, and let me tell you — these kids seem SO much smarter and more mature than I remember being at that age.  I feel like we might actually be witnessing evolution in action. Could that be possible?

Looking back on my 1984 self, it’s clear that I wasn’t the sharpest tool in the shed. One morning I found a dollar at the bus stop and instead of saving it or spending it on something useful, I ran to the closest place that sold things – our school’s pencil shop – and used it to buy 100 pencils. WTF. I didn’t even want pencils. I couldn’t even fit them all into my pencil case. Even my mom was like, “Hon … ????”

Despite feeling confused most of the time at that age (who exactly was The King, I wondered. Was it Jesus? Elvis? BB King?) I somehow made it into my school’s academically gifted program and emerged from the other end of the education pipeline with a PhD. How this happened, I’m not sure. But it suggests that if I wasn’t the sharpest tool in the shed, the other kids in my generation weren’t doing much better.

Today, in 2015, Little Bear and his friends wear lace-up sneakers, talk about things like atoms and walk themselves into small neighborhood markets with $20 bills and simple lists, emerging a few minutes later with bags of groceries.  Little Bear’s favorite activities include anything related to nature and animals, reciting facts from “The Magic Schoolbus” and helping me figure out which way to go when Siri directs me to turn left. (If Siri were real, she’d shout, “Left! LEFT, I SAID! DAMN it, woman. Rerouting.”)

So I guess I’m just wondering what all of this means. If kids are really smarter today than they were in 1984 … well, what happens next? Will there be different benchmarks for academic achievement? Will they figure out how to teleport instead of fly? What other magic lies in store for us? I don’t know whether to feel nervous or excited or both.

According to Little Bear’s description of how evolution has played out so far, we might expect future generations to have new and exciting appendages, for example:

In any case, let me know if you figure it out.

I’ll leave you with one little story before I go: The other day I took Little Bear to get a special snack after swim class. He pointed to the chocolate milk and asked, “Mama, do you know how they make that?”

Now, here I thought he was actually asking me for information. My chest puffed up. I felt proud! I didn’t go to school all those years for nothing! I smugly turned the question around and asked him what HE thought, sure he would mention something about brown cows.

Here’s what Little Bear thinks: They melt chocolate and add it to regular milk.

WHAT.

Now that’s what I’m saying, people.

What the heck.

#evolution

KaiChores108

(At age 5, Little Bear’s proposed list of chores include: “Kleinn d’ flor” and “Mece sure d’ Kat doesn’t poop on d’ bed.” That sounds about right. At least some things never change.)

Losing control

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

Bunz’ first friend!

This weekend, Bunz had a playdate with a little girl who genuinely loves playing with him, and he with her. It’s the first time a kid has asked to come over and play with him. I’m trying not to make a big deal about it, but … !!! Bunz has a FRIEND! It’s totally a big deal!

In the interest of playing it cool, though, let’s pretend that it’s nothing. Kids have friends. Whatever. But to be honest, it just never seemed like Bunz was into other kids. Given the choice, he prefers their moms every time. 252144

I can totally understand his fascination with this particular mom. I like her, too. It might be her tattoos. But I also like her because we laugh at the same things, which is important. And her little girl is sweet and mellow and makes me wish I could be 6 years old again.

So when the mom flagged me down one day after school to tell me that her daughter wanted to play with Bunz over the summer, I was only a little skeptical. Did I think she was making up this story just to be nice? Absolutely. Did that bother me? Not too much. So I said sure, let’s get together. And then I thought, crap. What are they going to play with?

The list of things Bunz isn’t really into includes food, stickers, kids his own age, following directions, loud noises, doctors, Legos, superheroes, dinosaurs, arts & crafts, cars, and most mainstream toys. He prefers solitary activities in the company of others: playing his piano, reading books, singing Broadway songs, solving math problems. Our house is full of toys, but Bunz only likes one: my old baby doll Ellen, which he insists is a boy doll named Drink. Bunz likes to ask me how old Drink is. I tell him Drink is 36. It’s just that Drink didn’t eat his veggies as a child, and now he’s only 1 foot tall. That’s what happens when kids don’t eat, I say.

But sometime this past year, Bunz started to enjoy board games. Candyland, Chutes and Ladders, even Scrabble Junior. Finally! An opportunity for interactive play! This has been great in the after-school program. As it turns out, Bunz is quite the rule enforcer. He might act like rules are beneath him, but heaven forbid another kid goes the wrong way down a chute or ladder because Bunz will not stand for that crap. His new appreciation of rules has been super helpful around the house. Instead of having to check the toilet seat and bathroom floor before sitting down, I can now post a sign on the door that reads, “Little boys must use other bathroom!” It’s magic! I might be selfish, but I hope this phase lasts. The possibilities are endless.

Anyway, back to the playdate. When I told Bunz that his friend wanted to come over, his response made my heart ache with gratitude for this little girl and her mom. “Yeah! Yeah! I want that!” he said, enthusiastically nodding his head. In that instant, I became guardian of his heart and decided that we could not, under any circumstances, cancel this playdate. Even if both families came down with the flu. Even if there’s a natural disaster and the city is evacuated. This playdate would happen. No. Matter. What.

If all else fails, I thought, they can just play Candyland for a couple of hours. How bad could that be?

Hmm.

Luckily, we didn’t have to find out because Bunz magically transformed into Prince Charming as soon as the little girl’s family walked into our house. I couldn’t believe my eyes. Without prodding or involvement on my part, Bunz and his friend disappeared together and re-emerged at the piano. Then they played school. And house. And swung in the hammock. And watched a video. It was all very amazing and sweet. And normal.

And interesting. Bunz and Little Bear are only a year apart so naturally they play together at home. But their interests are so different that usually Little Bear ends up bossing Bunz around and Bunz just goes along for the ride.

This, by contrast, was interactive play. Real interactive play. Play that both kids seemed genuinely interested in. Was I dreaming? I wasn’t sure. But god, how I love little girls. They have the biggest hearts.

While Bunz was playing with his friend, her mom and I had a nice playdate too. I’m amused to share with you that I now have a friend who is significantly younger than me. I have many friends who are significantly older than me, but this is a first. Before the playdate, my inner introvert felt fairly certain that nothing I could say would even remotely interest a person this young. For 2 whole hours. I felt stressed. While I waited for them to show up, I stood at the refrigerator and debated whether to brace myself with iced coffee or a shot of Kahlua.

Or … both.

Hmm.

But as it turns out, we had a great time and there were a million things to talk about. Interesting things just kept coming out of our mouths. There will be a next time, we agreed. And at that next time, there will be wine.

Not everyone enjoyed the playdate, though. Kitty Little lay curled in her pristine cat bed and cast judgmental stares at Jake the dog and the little girl’s 6-month-old Husky puppy, who were sniffing each others’ tails. Jake was alternately ok and not ok with the playful Husky. He wasn’t exactly a gracious host, but he did ok. For the animals, it was a lesson in tolerance.

For everyone else, a lesson in tolerance – for once – was not the point.

What a perfect day. 🙂