something beautiful

Lucky Number Seven (Happy Birthday, Bunz!)

~ teambunz ~ Leave a comment

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!!

😉

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Sometimes, you just need to drive

~ teambunz ~ Leave a comment

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

What I want you to know about my child

~ teambunz ~ 2 Comments

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

Big news! We’re expanding our family!

~ teambunz ~ Leave a comment

Years ago, back when my husband and I thought we were in charge of our destiny, we planned to have one child. Total. When the baby turned one, we’d adopt a dog.

That was our plan.

What actually happened is that Bunz was born under the October full moon and all hell broke loose. No longer did we have each others’ full attention. No longer was our house clean and organized. No longer did we sleep. Or eat. Or think. Everything was new and different and complicated. Breakfast was served at lunch, lunch was served at dinner, and showers were scheduled for Tuesdays and Thursdays, when my husband’s aunt came to help.

When Valentine’s Day rolled around, my mom took pity on us and offered to babysit. She wasn’t exactly a baby person, so this was a really big deal. We happily accepted.

A few weeks later, I felt like something was off. I felt unusually happy … and normal … all of a sudden. Which sounds kind of funny but, actually, if you laughed just now you’re about to feel really bad because I was in a dark, dark place after Bunz was born. I’m the kind of person who can laugh at a funeral, but not even I can laugh off that darkness.

When you’re a girl in your early 30s and you get that ‘something’s off’ feeling, there’s only one thing to do: I packed up Bunz and headed to the store for a pregnancy test. They were behind a locked cabinet. The store clerk who came to unlock them took one look at me with the crazy hair and the screaming infant, and shook her head. (Later, my mom stood with me at Bunz’ crib and shook her head, too, saying, “Oh, hon. What would you do with another baby?”)

Have you ever taken a pregnancy test and waited way longer than it says to wait just because you’re so terrified/hopeful that the second line will appear? This wasn’t like that. As soon as I peed on that stick, two of the deepest, darkest possible lines appeared. There was no question about it – Little Bear was in the HOUSE.

I looked at 4-month-old Baby Bunz laying on an activity mat in the hallway. I looked at the stick. I tried to picture my husband’s panicked face; decided I’d rather not. I knew it would be a very long time before we got that dog.

Well, fast-forward 6 years and here we are. Meet our newest family member, Crazy Jake.

We’ve been promising Little Bear a dog ever since he could talk. The deal has always been that he could have a dog when he turned 5. We used to think of age 5 as some ambiguous point in the distant future, but somehow he’s already 5 and we’re screwed. “Now remember – you’re going to be 5 for a whole year,” we’ve been saying.

Lately, though, we’ve been feeling like we might finally be ready. So last weekend we went to a large adoption event hosted by several local animal shelters. We weren’t sure if we’d find our dog, but we were at least willing to entertain the possibility.

We walked around and saw all kinds of dogs, large and small, friendly and shy, playful and reserved. One dog, a medium-sized Border Collie/Australian Shepherd/German Shorthair Pointer mix, looked kind of goofy as he perked his ears, tilted his head and stared at an invisible spot on the asphalt, like he was deciphering a secret message. Suddenly he bounced straight into the air on all fours.

That’s one crazy dog, I thought to myself. He’s perfect.

Have you ever met someone for the first time and felt like you’re reconnecting with an old friend? My friend Sara and I met that way. The first time we laid eyes on each other, we were both like, “Oh hi. It’s you. What are you doing here?”

That’s how it felt with this dog. I swear I recognized him from a distant time or place. A fairy tale. A memory. A dream.

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The more I learned about the dog and his background, the more I felt like this situation had my dead mother-in-law written all over it. (See? That’s funny. We can laugh at that.) Check this out: The dog’s previous owner was a kindergarten teacher (like my MIL) who had been training Jake to be a therapy dog (which we need). He’s deaf and is trained to respond to hand signals and some ASL signs (possibly allowing him to be more intuitive and attentive than other dogs). Also, he has brown ears (see “…but what does it MEAN?!?”). And his name is Jake – the name my husband’s grandfather called every one of his grandsons, regardless of their actual names. When Little Bear was born, we gave him the middle name Jacob just so that Pop Pop would be right when he drawled, “Hey Jake!”

After some discussion and consideration (in which I purposely didn’t mention the MIL theory), we decided to take Jake home and see how it went.

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Oh God. Can you even imagine what a stressful day that was? My husband and I kept having flashbacks to the day we brought Baby Bunz home from the hospital. Chaos. Anxiety. Clusterfucks.

Our first walk with Jake reminded me of that book, The Diggingest Dog, about a little boy who adopts a dog that doesn’t know how to dig. When the dog finally learns how to dig, he digs up the whole town, including the highway, the barber shop, and multiple vegetable gardens. That’s Jake.

11424665_10106989656194771_8264358147848065838_o“Back up! Back up! Here he goes!” we shouted multiple times that day, as Jake dug holes the size of watermelons in 15 seconds flat, spraying Bunz with fresh soil. Clearly we have some issues to iron out, I thought. On the other hand, he was incredibly attentive and responded immediately to the two hand signals we knew: lay down and potty. It was clear that someone had trained him well.

11206795_10106979630421501_3903009021660262195_oOver the years,  I’ve gotten semi-used to a chaotic house – when you live with three boys, there’s only so much you can control. But adding a dog to the mix has been mind-boggling. Right now, Little Bear is dragging the dog around atop a long carpet runner from the hallway. Bunz is playing the piano, loudly. Drops of dog slobber and water bowl spillage mingle with discarded dry food and dog treats on the kitchen floor. I haven’t played my guitar or worked out in days. Kitty Little is hiding under the bed.

Even worse, my emergency bag of chocolate chips is missing from its hiding place at the back of the kitchen cabinet. Someone found it and ate it.

What I need to do now is clean. Cleaning always helps.

But I’m exhausted.

I’m being over-dramatic, of course. The beautiful moments far outweigh the chaotic ones. Noticing Jake wait patiently for Bunz as we navigate down the front stairs. Listening to Little Bear teach Jake tricks and new signs. Seeing Jake jump into the shower with my husband, uninvited, and then refuse to get out. Finally meeting the older man who lives in the hippie house down our street. I’ve always wanted to meet that guy and now I know his name: Norm. I feel like Norm and I should have a lot to talk about. What I didn’t tell Norm is that Jake is the one who dug that huge hole in his front lawn. Norm still thinks it’s the gophers. Heh.

Every day it’s getting easier, and it’s only Day 4. Here’s hoping that the next time we meet, the newest member of Team Bunz is so seamlessly integrated into our household that we can’t remember life before he was here.

… but what does it MEAN?!?

~ teambunz ~ 1 Comment

I’m one of those people who tries to find meaning in everything, if you haven’t already guessed. I think this comes from being raised in an Irish Catholic family. I don’t know about your Irish Catholic family, but mine buried my grandma with a dime to make a phone call. And a few other handy items. We were a superstitious bunch. Predictions and “feelings” ran rampant. I’m just a product of that upbringing, is all. No need to psychoanalyze. Or judge.

Sometimes this is helpful, like when Bunz is spinning down the path towards a seizure. I totally understand those seizure-sensing dogs, because I swear there’s a shift in Bunz’ energy before he has one. Sometimes I’ll lay down next to him in bed and immediately feel uncomfortable, shaky, like I’ve gone too long without a snack. And sure enough, he’ll have a seizure that night. I’m no seizure-sensing dog – I overlook about as many as I predict – but whenever I put my face next to his and sense that change in energy, my prediction is spot on.

Other times it’s not so helpful to search for meaning in meaningless things. Like when I drink too much coffee in the afternoon and get really anxious at night. “I’ve just got this bad feeling,” I’ll say to my husband. “Something’s not right. Bunz did something at school that he’s not telling us about. I just know that teacher’s sitting there on her iPad, typing out an angry e-mail. Just wait!” I’ll say to him. To which he replies, “Hon. Did you drink coffee today?”  Because he knows there’s no meaning in caffeine overload. And by now I do, too. Because I’ve tried and tried, but I can’t predict when I might receive one of Ms. C’s pointed e-mails. How I love that woman. Nice but not too nice.

Anyway, I’m thinking about all of this because yesterday a girlfriend arranged for me to meet with a psychic medium. Yes, you read that right. And it was awesome. If this sounds farfetched to you, that’s ok. We can still be friends. There’s nothing I can tell you that will change your mind. We can just agree to disagree. But for everyone else, let me just tell you what a mind-boggling experience this was. You have to hear what this lady said about Bunz.

First, some history. This medium was discovered several years ago when my friend’s aunt bumped into her at a social gathering. The medium-who-was-not-yet-a-professional-medium was basically like, “Hey, can I share something with you?” and proceeded to give my friend’s aunt a bunch of intimate information about her mother, who had recently passed away. No money was exchanged, and the medium apparently had no way of knowing this information. Now, years later, the woman has become brave enough to offer private readings in her home.

Before I tell you this story, let’s be clear: I’m totally biased. After I heard the story about the aunt, I couldn’t even pretend to be a healthy skeptic. That said, the medium knew only my first name. And she instructed me to answer her questions with a simple “Yes, I understand,” or “No, that doesn’t make sense to me.” I wasn’t encouraged to provide additional information during the reading.

Now I’ve been to visit psychics in the past, but this lady was beyond anything I’ve ever experienced. She even seemed to respond to things I was thinking, which was a little nerve-wracking. I realized she was doing this at the beginning of the reading when I thought, “I wonder what my mother-in-law could tell me about Bunz and why things went wrong during his birth.” And without me saying anything, the woman was like,

“You’re wondering about your son. Something about the letter L, the number 6, and the month October. Jackie says she held him first. She says that when he stares off or seems distant, he can see her. Do you have a dog? You’ll get a brown dog. That dog will see her too. She says that if she could paint a picture of how she’d wish him to be, she wouldn’t paint it any other way than how he is. And you’re thinking you wish she could be here now. You regret that she’s not here; you think if she were here she would work with him until he was completely on track. She’s showing me a picture now, I see him surrounded by books. She wants you to read with him. Read, read, read. And be patient. You’re a patient mother. What a surprise that is, huh? Just keep being patient. Someday it’s going to be like a light switch goes on and everything takes off.”

Yeah. So that happened.

An hour and a half later, I left her house with mascara running down my face, a recording, and a pad full of notes. In addition to the bit about Bunz, the medium conveyed some really amazing messages from my mom and some funny things from Pop Pop, who made the medium laugh until she cried (if that’s not a confirmation of his presence, I don’t know what is).

Now. Despite my wholehearted belief in this medium, I have enough self-awareness to realize that I could benefit from a dose of healthy skepticism. Perhaps you can provide this for me in the comments. Go ahead. (See? We can still be friends. Maybe?)

Sometimes I think Little Bear senses my need for that, too.

Right now, the two of us are sitting in the airport, waiting to board our flight back home. It’s been a productive work week for me, and we both had a lot of fun with family and friends. To pass the time, Little Bear is playing with our boarding passes, arranging them in the shape of various letters. First he made an L. Then a T. Then a K, with the help of his little index finger.

When he made an X, I asked him, “So … is that like X marks the spot? Or is it like an X because you got the wrong answer?”

“Mama,” he said calmly, patiently. Looking up at me with his wise blue eyes.

“Sometimes an X is just an X.”

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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. 🙂

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Scattering her ashes at sunrise on Christmas Day.

Below: A poem found tucked into her Bible.

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Why I believe these 10 people with #cerebralpalsy are exceptional

~ teambunz ~ Leave a comment

RFTS2014-Ribbon-StarAre you ready for this? In honor of March 25 – Cerebral Palsy Awareness Day – I’d like to introduce you to 10 exceptional kids who have redefined what it means to break down barriers. They’ve torn the dis from ability and kicked it to the side.

First, let’s get through the awareness part: Most people with cerebral palsy, or CP, had a brain injury before/during/soon after birth. Some had strokes. Some had traumatic births. For some, we’ll never know what happened.

The encouraging thing is that our brains are plastic, meaning that healthy areas can eventually compensate for damaged parts. The challenging thing is that no one can predict how that might play out. People with CP can have dramatically different outcomes. Some of the kids featured here aren’t yet speaking. Some aren’t walking. Yet. But remember the secret I shared with you? Yes. That. We all have that in common.

In the meantime, different families wait for different things. We’re waiting to see if Bunz will sleep in his own bed. Make friends. Outwit bullies. Go to college. Drive a car. Have his own place. Produce cute little grandbunnies who disregard authority. (He says that will happen when he’s 15. Hmm. Here’s hoping for 30!)

Despite all of this uncertainty, one thing is for sure: People with CP are exceptional.

In the words of a wise woman:

Some people might look at Bunz and say, ‘This kid is delayed, so he must not have a very good brain.’ But I would say that this kid has an exceptional brain because look! Even with all of his physical limitations, he has figured out how to walk and move and talk and communicate. That’s not easy to figure out, but he did it. And I’m not sure I would be able to achieve all of that if I had started life with the same limitations. So I would say that his brain is even more exceptional than ours.

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Without further delay, here are 10 of the most exceptional friends, neighbors, and heroes a boy could have. And a few words about their amazing moms, who will always be my personal heroes.

Happy CP Awareness Day, from Bunz!

Exceptional Kid #1: Ella, age 10

11079276_10205388305101561_2059614904_nThe first time our physical therapist said the words “cerebral palsy,” she told us about Ella. How Ella didn’t let anyone stop her. How Ella wanted to play the harp, so she did. Ella wanted to ride horses, so she did. It didn’t matter that it wasn’t easy. You want to do something? You do it. Period. Back then, Bunz was a baby and we weren’t sure what to expect. How fortunate we were to share a therapist with such a determined little girl! Hearing about Ella’s hard-won triumphs was exactly what we needed as we embarked on this journey. Her mom writes:

“Cerebral palsy has taught us a lot about 11072690_10205388304781553_1823093690_ntrust. We need to trust that Ella will push through difficulties. That she won’t see us as nagging therapists but as loving parents. That her challenges will become her strengths.

At age 10, she’s been riding horses for 8 years and playing the harp for 4. We’ve discovered a whole community of supportive people and a world that not only accommodates difference, but needs just the kind of difference Ella brings. We’d get rid of CP if we could, and sometimes it’s really tough, but sometimes it makes a space for joy and appreciation that simply couldn’t have existed otherwise.”

Exceptional Kid #2: Bennett, age 11

“Bennett has hemiplegic cerebral palsy from a stroke in utero. This year he tried trapeze on our family vacation and was thrilled to do his own style ‘one-armed monkey hang.’”

IMG_3548That’s from Bennett’s mom. Let me just tell you, that woman is fierce. We met about a year ago – she happened to be touring a school when I asked how many of the K-1 students had individual education programs (IEPs). The principal replied, “None. We don’t worry about IEPs until the second grade.” I paused for a second. Let that sink in. Rewound, just to be sure. Did he just say …? Early intervention actually exists, right? It’s a Thing? Or did I imagine it?

I’d been planning to say something else, but my mouth hung open in disbelief. Audrey came over and gently closed it, then handed me her phone number. I crossed that school off our list.

Audrey writes:

“Life with cerebral palsy is joyful, exhausting, fascinating, trying, and inspiring for all of us in Bennett’s life as we watch him meet each day’s challenge with determination.”

Exceptional Kid #3: Nolan, age 3

Oh! Now look at this charmer. This is Bunz’ “little bro,” Nolan.

IMG953136You’d never guess it now, but Nolan had no independent movement – not even rolling – until he was 18 months old. What changed that? The question you should be asking is who changed that. A lady named Anat Baniel. The lady behind the exceptional brain quote.

Her center in the San Francisco Bay area attracts families of kids with CP, autism, chronic pain, you name it – from all over the world. She also works with top athletes, musicians and dancers to hone their skills. A couple of years ago, we raised money to travel to the center for 2 weeks and we were blown away by Bunz’ progress.

Every few months, Nolan and his mom travel to the center from their home on the Oregon coast. The cost is exorbitant, but when you find a therapy that helps your child as much as ABM has helped Nolan, you find a way to make it work. His parents had a fundraiser last year and ISTG I would have dropped $1,000 in their pot if I’d had it available.

Here’s a recent photo of Nolan at the ABM center. The photo is a little dark, but can you see? He’s taking steps! Soon he’ll be an independent walker. And a smooth one, at that! That’s the power of ABM.

IMG953500Here’s what his mom wrote. She’s incredible, by the way. And also a supermodel.

“This road that we’re traveling is not what we imagined before our sweet little boy was born. It’s so much more difficult. To watch him work so hard to complete what seems like a simple movement, to devote all of our time and resources to cutting-edge therapy … but then again, our path is so much brighter than we imagined. We’ve learned lessons about life, about ourselves, about the people around us and the threads that make this world unique. Every new milestone that he reaches fills us with pride!”

Exceptional Kid #4: Julia, age 12

Here’s a beautiful sixth grader named Julia. I’m always struck by how thoughtful she is, and I don’t just mean that she’s kind. She’s a thinker. A musician. A beautiful person, inside and out. Really great kid.

Her mom sent a few photos, so you can see for yourself.The Kids Are Alright

Julia and Isaac, Service-Dog-in-Training and rascally best buddy. Julia says having a service dog is one of the perks of having CP. While having a service dog means Isaac can go everywhere with Julia, it also means years of training with your pup. Kind of like trying to tell your baby brother what to do! One of the perks of having CP, for sure, but also one of the challenges!

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Being a stroke survivor and a kid with CP means getting the chance to “Play Ball!” with her city’s Little League Challenger division. Meeting celebrities like Lou Seal is an extra perk!

When Julia, with very limited use of her right hand and arm said, “I would like to play the violin,” her parents got together with her orthotist and figured out a way to make that goal possible. Julia is still studying and is now preparing for her first solo recital.

Photo by Betsy Kershner, 2013.

Julia & Beau 1Julia is the tallest, fastest girl around while riding Beau, the adorable Clydesdale. Julia rides other amazing horses, and while this is a fun and challenging activity for Julia, for her parents, seeing Julia riding tall in the saddle is one of the most healing, joyful experiences ever.

Exceptional Kid #5: Enzo, age 5

Now, here’s a little boy who owns my heart. He holds the deed and everything.

I met Enzo when he was only a few weeks old; Bunz was about 1. His mom and I had connected through a traumatic birth workshop. Our birth stories were so similar and I remember how rock-bottom we both felt. Another woman was taking the workshop, too; she was recovering from the emotional trauma of an emergency c-section. Well, let me tell you – after hearing our stories, that lady was instantly healed. It was a miracle! The thing I love most about Rebecca is that even in our darkest days, we could look at each other and laugh when that lady high-tailed it out of the workshop. Enzo’s mom is my kind of friend. And when I look into Enzo’s brown eyes, I fall in love every time.

Now I know what pain is.

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Now I know what love is.

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Now I understand the meaning of acceptance.

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Exceptional “Kid” #6: Ashley, age 28

My favorite exceptional adult (and kid at heart) has a few words for Bunz and other kids with CP:

FB_IMG_1426901355436“My advice would be to never give up, even when it is bad. My parents were told I would never walk or talk. If you know me, this is not the case at all (haha). Just because a doctor says something is likely to happen, doesn’t mean it will. Every case of CP is unique.

Some people might assume that you are not smart. When I tell people I am getting my Master’s, the blank stares are kind of funny. There are good days, there are bad days – it’s all about how you react.You will come across a lot of ignorant people, but the goal is to not let them get to you. You can either let the world win or you can put up a fight.”

Ashley’s mom, Ms. Gigi, was Bunz’ first mainstream preschool teacher.  I remember dropping Bunz off on that first day and hearing another kid say, “He walks slow.” It hurt to hear that, but the kid was right. What came next, though, was totally awesome: Without even skipping a beat, Gigi responded, “Yes, but he’s a really great singer!”

I didn’t know it at the time, but Gigi and I have a lot in common. When I finally met her daughter, Ashley, I had to hold back tears because I’m so proud of her. She really is incredible. Before we met, I didn’t dare hope that Bunz would attend college. Now I’m hopeful. We are beyond grateful for the wisdom they share.

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Exceptional Kid #7: Malia, age 9

Here’s another young woman, Malia, who attends a peer group for kids with CP that we were once part of. I love this group because until we attended our first meeting, it seemed like we were the only ones dealing with the challenges of CP. And then we walked in and saw our family multiplied by 10. It was such a beautiful thing.

Malia’s mom sent a few photos for us to admire:

Our happy angel

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Progress:  Malia could not stick her tongue out before – now she’s sticking it out there!

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Exceptional Kid #8: Lily, age 13

Here’s Lily, an inspiring girl who never loses sight of her goals. Her mom submitted a few photos to illustrate the true meaning of tenacity:

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“This is Lily getting fitted for a body brace. We still haven’t found funding for the brace, but this is the first time she’s ever stood up mostly independently!”

Below: “Lily works so hard everyday to move forward.”

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Exceptional Kid #9: Shane, age 5

334415_4456831913318_1382364317_oI’m only just beginning to know Shane and his family, but I have to tell you – there’s something completely heartwarming about them. For starters, Shane is an exceptionally bright kid. He’s going to do something spectacular in life – I can feel it. That’s what I’m waiting for.

Shane’s mom, Adrienne, writes:

“You might think that Shane is a big fan of the Giants. But no! He just loves to have his picture taken. 😉 I guess you could say he is a big flirt with the camera.”

The way that we met is really special, too.  It was New Years Day. Our family was having lunch at a “restro-naut” and Bunz was especially loopy – as it turns out, January was a bad month for seizure control. Convincing Bunz to eat makes me a little loopy, too.  I remember steering him through the crowded restaurant to the restroom and nearly running over one of the waiters. “I have a little boy with CP, too,” he said. Out of nowhere. It was the best random statement anyone has ever made. I’m with you. We proceeded to have the most productive 5-minute conversation possible, and then he brought Bunz a spillproof cup of apple juice. The rest is history.

10904083_10204860277461132_6639149655618478419_o“We are so proud of Shane’s progress. What a fantastic thing to see him stand so tall in front of the Christmas tree with his Dad. He is so amazing!!”

And last but certainly not least …

… our celebrity guest …

… get ready for it!

Exceptional Kid #10: Fireman Max, age 10!

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Yeah!! I’m so excited to include Max in our CP Awareness post! I’ve been following his mom’s blog, Love That Max, since well … forever. Years and years. We’ve watched Max grow up. Type his own blog post. Become an honorary fireman. He’s such an inspiration for us – for Bunz and thousands of kids and parents around the world. Everyone loves Max.

His mom, Ellen, writes:

“My son doesn’t know the meaning of ‘disabled’—he just knows to figure out how to do things his way, on his own timeline. In other words, he rocks.”

To that, I say YES. Happy CP Awareness Day!

Why our #lifewithepilepsy is just a little hard

~ teambunz ~ 1 Comment

I’d like to share a little secret – the reason that #lifewithepilepsy isn’t hard hard. Just a little hard.

I’m sharing this because all of a sudden family and friends are offering to buy airline tickets and come help, and that’s not at all what I intended. You guys are sweet, but remember? I only ask for help when I’m wearing Hammer pants.

Now. It took me years to find this secret, so don’t think I’m going to give it away just like that. Let me first tell you how I discovered it.

Awhile back, I took a course to become a certified hypnotherapist. I thought I wanted to help other people, but in hindsight I realize that I needed to help myself first. There’s a lot of complicated baggage to sort through when you transition from not being a special needs parent to suddenly being one. And there’s no training program to prepare you for this stuff. Life just happens. You make it work.

When it was my turn, my instructor deftly steered me into hypnosis, then stepped aside and let my subconscious mind take the reigns. At some point, she snapped her fingers and I found myself standing beneath the eaves of a majestic cathedral, inhaling crisp mountain air and looking out over treetops as I waited for my companion to arrive.

I felt calm, settled, still. He would come. When didn’t matter.

(Who was this companion, my ego wondered?)

Soon I saw the top of his head bobbing along the stone path toward the cathedral. A young boy, blond. Wearing a red wool sweater, hand-knit and unevenly hewn.

He ran with perfect ease. Not because he was late or I was waiting. But because he was so excited to meet me. He couldn’t wait to embark on the adventure we had planned. And he knew exactly how it would turn out.

No hesitation. No apprehension. Just joy.

The next image I saw was a baby in utero, sucking his thumb.

My baby. My Bunz.

That’s when it dawned on me: He came here willingly. And not just willingly. Eagerly.

THAT was powerful.

Now, depending on your belief system you’re probably sitting there thinking, hmm. Nice metaphor. Or wow! Past-life recall! Or in the words of Aunt Esther – you ol’ heathen!

I don’t know about any of that.

What I do know is that it was a major turning point for me. It opened my eyes to a new level of awareness that Bunz is so much more than what we see. The image of him running to meet me – and his excitement to come into this life, despite all its challenges – was so powerful. Because in real life, he doesn’t run.  And it’s hard to imagine that he would choose these challenges. You know, if he had a choice.

So the secret is that he is Glorious. Whole. Complete. Even in his incompleteness.

Perhaps Bunz and I knew what we were getting into before we entered this life. Perhaps his spirit is even older and wiser than mine. Perhaps we’re here to learn.

Or perhaps it was just a metaphor.

Sometimes I get carried away. 😉

59039_10100513066357721_4700457_nBunz’ first steps (age 2)

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.

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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.