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 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.
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 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??
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!
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.
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!
My son, Bunz, does an awesome job of enjoying life while navigating two disabilities: cerebral palsy and epilepsy.
In 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.
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.
“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.
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.
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.
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.
“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.
Over 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.
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.
Are 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.
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
The 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 trust. 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.’”
That’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.
“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.
You’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.
Here’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.
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!
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.
Julia 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.
Now I know what love is.
Now I understand the meaning of acceptance.
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:
“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.
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
Progress: Malia could not stick her tongue out before – now she’s sticking it out there!
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:
“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.”
Exceptional Kid #9: Shane, age 5
I’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.
“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!
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.”
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.
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?”
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:
I didn’t have a wallet.
Or house keys.
Or a booster seat.
Or a car.
I was wearing blue disposable Hammer-style pants, and
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
Today I found an awesome kid-sized craft table for the boys’ room.
Technically the room belongs to both boys. But no one sleeps there … and it’s full of toys that only Little Bear plays with … so let’s just be honest and call it Little Bear’s room.
A few weeks ago, Little Bear started crafting and just couldn’t stop. He’s still going strong, churning out 10+ pieces a day. And each one is so special: “Mama! Come look! I drew a mountain of all the numbers from 1 to 100!” I looked it over and marveled at the backwards 2s and the 39 inexplicably followed by 30, like the impossible stairwells in an M.C. Escher piece.
Some of Little Bear’s drawings are unsettling. Like this one, in which our house catches on fire and we have to live in a ‘kitchen’ (his brother’s word for ‘camper’) parked out on Kirkham Street.
Anyway, we’re running out of (a) space for him to create and (b) places to display his creations. Our dinner table doubles as Bunz’ homework area and Little Bear’s art studio.
So yeah. The kids need a desk.
Today was one of those days where I had a ton of work waiting for me, but nothing – nothing! – seemed more pressing than rearranging the boys’ room and creating space for the new craft table. God, how I love reorganizing!
In a matter of minutes (ok, hours) the room was completely transformed. A dollhouse and other toys from the living room were now tucked away in the bedroom, out of sight, out of mind (for me, anyway). I stood in the doorway to admire the new table, the tidiness, the everything-in-its-place-ness. What a sense of accomplishment! Excitement! Anticipation for them to come home and see!
And then, inexplicably, a wave of sadness. It’s hard to explain, but it’s like I was suddenly peering through a window into an alternate life. In the bedroom of this alternate life was Little Bear, an only child. I watched his shadow move through the room, working intensely at his table, playing pretend, laughing with his friends. So simple, so natural, so #everydaylife.
I realized I was seeing this scene though the eyes of another woman — the woman whose life this belonged to. I took a deep breath and noticed how this felt for her. I felt strangely light and carefree. I noticed that she wasn’t at all worried about the child at play. How lovely it felt not to be worried or concerned about the the next big thing. Maybe she had other worries in life (maybe not), but she felt bright and cheery when she considered the boy and his future. There was no need for concern here. Nothing was out of the ordinary.
In my mind’s eye, I took a step back and saw her standing there in the doorway. She had long, straight brown hair and wore a stylish dress. She looked polished, responsible, in shape, and organized. The very picture of adulthood.
Then I looked at Real Me, standing there behind her. I noticed my unruly hair, my clothes, the fatigue around my eyes and the heaviness in my heart. Oh God. Me.
What would this other lady think about Real Me? I was afraid for her to turn and see. Me, who is clearly not adult enough to have a neat and tidy life. Me, who has so much trouble brewing that I must have brought it all on myself. Ugh.
In the midst of my embarrassment, my mind flashed back to a writing class I took many years ago. A visitor from the New Yorker was reminding us that a good storyline always has tension. Without tension, your story is as bland as white bread, he reminded the class.
I looked back at Real Me and saw my life as a story in print. This is the story of a hellion, a warrior, a champion. This is the story of a woman who takes the bull by the (figurative) horns and fucking wins. She doesn’t let anything get her down — especially when it involves her kids.
And all because she had a freaking bull chasing her around in the first place. Dumb old bull, she might think to herself. But no bull, no fight, no victory. No tension. Bland white bread. End of story.
I turned and saw Real Me in a completely new light. Not as a failure but as a fighter – a woman with one hell of a story to tell. Tension? HELL YES. She deals with whatever life throws at her, which is probably why her hair always looks so crazy.
Will she win? Damn straight. Or she’ll die trying.
(In which a tall, skinny, gorgeous lady presents Real Me with a bouquet of flowers for my birthday. I’m the one with a big blue belly, fluffy brown hair, and yellow sneakers.)