Anni Griswold

@ann-griswold | contributor
Anni is a science writer, blogger and mom. She writes about her son’s journey with epilepsy and cerebral palsy.
Anni Griswold

When Your Child Has Epilepsy and You Worry About Seizures

My son 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 in our experience with epilepsy, there’s no such thing as a one-time thing. I’m worried. I shouldn’t worry. My friends tell me this, and my husband tells me this. Science tells me this. If I had a psychologist, he might tell me this. But Bunz’ new neurologist doesn’t say not to worry. She doesn’t say to worry, either – it’s just that she’s more of a facts and strategy kind of woman. Always thinking about the next step. She told me the other day that even when she’s not working, she’s always thinking. Is thinking the same as worrying? I want to be a facts and strategy kind of woman, too. But my heart keeps getting in the way. When my husband tells me not to worry, I tell him I’m just being prepared. Because the best thing to do if you’re worried about something is to prepare for it, right? And then there’s no sense in worrying because you’ve already done everything you can. Like that time I bought a hammer to keep in the glove compartment of my car. I wasn’t too worried about driving over bridges, but one day  this woman’s car went off a bridge  near our house and, miraculously, she survived. All of a sudden it seemed like a very real possibility that my car, too, could go flying off a bridge for no good reason. And if that did happen, I’d better have a hammer so I could smash my car windows and swim to the shore, just like her. (I doubt I’d notice my tube top falling down, though. I’d just yell at everyone to “Call my family! Don’t just stand there!”) But you know, there’s no sense worrying about these things because you’ll never get them right anyway. Chances are, you’re going to worry about the wrong thing. And while you’re busy doing that, something else will sneak up and smack you in the face. I ended up getting rid of that hammer 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 possibilities, 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 different than 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 Bunz’ brother 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. When he came out of it, he cried and begged me to take the seizures away. He got angry and tried to rip them out of his head, pulling out a few hairs instead. After the anger passed, he just seemed tired. I hate to say it, but d amn. I’m worried. Follow this journey on Team Bunz.

Anni Griswold

What Doctors Should Know About My Son With Cerebral Palsy and Epilepsy

My son Bunz does an awesome job of enjoying life while navigating two disabilities: cerebral palsy and epilepsy. In his seven 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 – quickly before you say anything to defeat 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’s 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 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 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 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. Follow this journey on Team Bunz. Do you have a story about your experience with epilepsy? Please send it to epilepsy@themighty.com and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “ Share Your Story ” page for more about our submission guidelines.

Anni Griswold

What It's Like to See My Child With Epilepsy Fail His Medication

Last night I was wandering down the produce aisle when my phone buzzed with a text from my husband: “4 min seizure. this sucks!” Our son, 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 3 a.m. 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? What was wrong with that woman? This morning we drove across the city for a hastily scheduled appointment with Bunz’ 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, an MRI and an MEG to try to pin down the location in his brain where the seizures begin. We discussed the possibilities. “Our new insurance provider will love us,” I thought. The neurologist asked Bunz some questions; Bunz gave real answers. I felt proud, remembering a few years ago when Bunz didn’t understand the concept of a question – that you were actually supposed to respond. He’s come so far. We must have seizure control, I decided. We demand it. After the appointment, Bunz and I sat on a bench outside the hospital and shared a blueberry muffin from the coffee cart. I told Bunz I was proud of him for working so hard, for learning so much and never giving up. Even when it’s not easy. He nodded. “I love you, too, Mama. Where are my Pop Chips?” I drove him to camp. His beloved shadow aide is gone for the rest of the summer and a new session started today, so he had a different classroom. Change is hard on Bunz. “Don’t drop me off here!” he wailed, his lower lip trembling. I left him on the playground. He stood near the teachers and watched two girls play with the steering wheels on a play structure. When they walked away, he ambled over to take a look. I watched him through the window. My stomach hurt. When will this get easier? Do you have a story about your experience with epilepsy? Please send it to epilepsy@themighty.com and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “ Share Your Story ” page for more about our submission guidelines.  

Anni Griswold

The Words That Make Me Question How I Push My Son With a Disability

There’s a fleeting awareness that materializes from time to time when I think of my amazing kids, especially my son, Bunz, and his friends who have physical disabilities. It’s not exactly a comfortable awareness. If it were, I would invite it in more often. But it’s fleeting and thank goodness, because it makes me question every parenting move I’ve ever made. I noticed it again yesterday afternoon as I walked with Bunz through the corridors of our local child development center. Bunz has mild cerebral palsy and is an extremely picky eater due to sensory, gastrointestinal and muscular issues. We were late for his weekly visit with a feeding therapist and I couldn’t help but urge him to move faster as we rushed toward the therapy room. Along the way, we passed a little girl around his age, brown pigtails bouncing as she knelt on the floor in front of a walker. Her mom, or maybe a female therapist, sat on the floor beside her. From my hasty glance, it seemed the girl was learning to push the walker down the hallway. As we hurried past, I glimpsed at her face in tears. “It’s too hard! I can’t do it!” she wailed. “Laura,” the woman said. “Look at me. You can do this. You’re already doing it! Let’s give it another try.” There. Those words. How many times have you heard those same words from a coach, a birth doula, a best friend or a partner? “Look at me. You can do this.” Throughout my life, those words have propelled me past countless fears and perceived shortcomings. At age 5, when my father swam with me past the ocean breakers. At age 10, when I called home on the first night of sleep-away camp. At age 15, before my first-ever cross country victory. At age 30, during the birth of our first child. At age 35, when I contemplated a career change. Those are words of endurance, perseverance and determination. And these kids have those qualities in spades. In that moment, I became suddenly, terribly aware that when we run a race, give birth without anesthesia or change careers after collecting various graduate degrees, that’s our decision. We elect to put ourselves through hell and back for a desired benefit. We sign up for that. These kids don’t sign up for this. What does that say about us, their parents? What are we supposed to do every day when our children are afraid or trying their hardest? Who are we supposed to be for these kids? Whenever I have these moments of awareness – whenever it hits me just how hard Bunz must work to meet my expectations – I start to question my role as his parent. Who am I to push him so hard? How dare I insist that he wake up every day and enter this race? Who am I supposed to be for him? Well. I’ve given this some thought, and here it goes: I am his cheerleader, his coach, his advocate, his mom. I am the woman who believes in him most. Together with his father, I will give him space to fall, to fail, to stand up and try again as he works toward independence. I am the one who sees him as whole, perfect, complete. I see his light, his darkness, his weaknesses, his strengths. I see all of him. I see him and I believe in him. Unconditionally and without exception, I believe. A version of this post originally appeared on Team Bunz. The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night .

Anni Griswold

The Lesson My Mother Taught Me After Her Death

I love to celebrate motherhood. Every single day. Isn’t it amazing? Aren’t our mothers just so strong and resilient and beautiful? I’m never quite sure how to feel about the official Mother’s Day. 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. 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 she taught me the most valuable lesson after her death. She passed away 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 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 horse. 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 right 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. 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 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. ALS. Every night in my dreams, she beat the odds. Only last year, in deep meditation at a craniosacral therapy 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 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. This post originally appeared on Team Bunz. The Mighty is asking its readers the following: Describe a memory with a loved one that you didn’t realize meant so much to you until they passed away. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to celebrate the human spirit? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

Anni Griswold

Why Our Life With Epilepsy Is Just a Little Hard

I’d like to share a little secret – the reason  #lifewithepileps y 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 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. This post originally appeared on Team Bunz. Want to celebrate the human spirit? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

Anni Griswold

Boy Tells Mom What to Do During Epilepsy Seizures

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, my son, 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 Cheerios! OK, Mama! O-K!” 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 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 f*cker 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. 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. And here we go. I gave him the emergency rescue medication, then waited. Still seizing. Five minutes passed. Ten. “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. “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 911. “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 f*ck 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’d insisted that my husband leave for the two-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 f*ck off. But I think actually he was just trying to be nice. I was in a terrible mood. 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 was going to be sent home in a gown. I don’t often ask for help. 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. She let us out in front of our house. I carried Bunz inside. 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 60 times zero!” 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? In that moment, all I could think was That’s the only answer. Just love. Well. That I can do. This post originally appeared on Team Bunz.

Anni Griswold

Why I Believe These 10 People With Cerebral Palsy Are Exceptional

Are you ready for this? In honor of March 25 – Cerebral Palsy Awareness Day – I’d like to introduce you to 10 amazing 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: Many people with cerebral palsy (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 in a previous blog post? Yes. That. We all have that in common. In the meantime, different families wait for different things. We’re waiting to see if our 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 this uncertainty, one thing I believe is this: 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 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. I’m not sure I would have been able to achieve all of that if I’d started life with the same limitations. So I would say that his brain is exceptional. 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! 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 eight years and playing the harp for four. 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.” 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, Audrey. Let me tell you, that woman is fierce. We met about a year ago – she also 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. 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.” 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 two weeks and we were blown away by Bunz’ progress. We didn’t want to leave. So, we didn’t. 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 this has helped Nolan, you find a way to make it work. Here’s a recent photo of Nolan at the 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! 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!” 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. She writes: “Julia says having a service dog is one of the perks of having CP. While having a service dog means her pup, 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 San Francisco Little League’s Challenger division. Meeting celebrities like Lou Seal is an extra perk! When Julia, with 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. 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.” 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 Enzo’s mom is my kind of friend. And when I look into Enzo’s brown eyes, I fall in love every time. His mom writes: “Now I know what pain is.” “Now I know what love is.” “Now I understand the meaning of acceptance.” Ashley, age 28 My favorite exceptional adult 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. Malia, age 9 Here’s another young woman, Malia, who attends a local peer group for kids with CP. 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!” 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!” “Lily works so hard everyday to move forward.” 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 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 we met is really special, too. It was New Year’s 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 five-minute conversation possible, and then he brought Bunz a spill-proof 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… Max, age 10! I’m so excited to include Max in my 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! Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .