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Guest Posts, parenting, Special Needs

Improvise, Stabilize, Stagnate, Repeat

July 3, 2021
all

By Abby Braithwaite

“Mom, let’s go up there!”

“You don’t want to go just a little farther on the flat part, see if we can find the stream, and maybe see some of those frogs making all that racket?”

“No, up there! Hmph.”

My daughter stomps her foot, crosses her arms, and juts her chin at the near-vertical bank to our right. An expanse of loose rock, dead grasses and newly-awakened poison oak leads up to the abandoned mine above us, and beyond to the top of the rim-rock where her dad, brother and beloved babysitter are hiking. But really, it wouldn’t matter if no one was up there. Every time we have hiked this trail over the past couple years, off-roading has been this 4-foot, 9-inch teenager’s path of choice. She huffs again, tossing her pink bangs off her mostly-shaved head and standing firm.

“That way. Now.” It’s amazing how clearly she enunciates when she is mimicking my get-serious-and-listen voice. If only her speech therapist could hear her now.

“Alright, let’s go.”

***

If you want proof that evolution is dangerous, all you have to do is parent a teenager. Or teach one. Or just choose one out of the crowd and watch her move through the world. The fact that an entire species has banked our survival on the teenage brain is a mind-bender, and the ultimate proof that in order to get anywhere in life, you have to be willing to risk it all on a twist of DNA.

That first amoeba family could have just trucked along blob-like for an eternity, comfortable in its amorphousness, and populated this planet with slime. But no, some type-A couple of perfectly good cells had to go and mix it up and complicate the next generation with extra material, and things just went from there.

Improvise, stabilize, stagnate, repeat. Evolution in a nutshell. Sure there’s some loss along the way, but how else is a fish supposed to crawl out of an ocean and walk across the sand, if it’s not willing to take a chance?

***

As I follow Adara up the side of the hill, I keep one hand on the small of her back to remind her to keep her weight forward so she’ll tumble up if she trips, and not topple all the way back to the nice sandy path below us. As I feel her push herself up, muscles tensing under my hand, I notice again that her right glute is about half the size of her left, the result of a long-ago surgical repair on a bad hip, and I wonder if she likes this kind of climb better because it’s a break from the relentless, crooked pound-stumble that is walking when one leg is an inch shorter than the other. Maybe, like the short-sided mountain goats in that old comic, she knows she’s built for side-hilling.

Or, maybe she just likes to do it the hard way.

Either way, I’m glad to be walking behind her in the April sun, grateful I was able to get her off the couch and out the door after the rest of the group headed out on a hike I would have been on if there was someone else to hang out with my kid. And truth be told, I’m not sure I would have been able to keep up with them anyway. I’m probably better off down here where I can collect rocks, listen to the frogs, and watch the clouds roll by while Adara picks her way up this impossible slope.

***

And so, some number of millennia and branches of the tree of life later, we arrive at the human species. Like many living things before us, plant and animal alike, we had figured out that for the healthiest populations, we had to spread out to mate. Trees send their seeds on the wind. Thistles catch onto the coats of the wandering beta wolf, and so propagate new thistle fields on the other side of the mountain range. The scent of ripe berries on the breeze brings a feeding frenzy, and berry seeds are shat out in myriad piles across the watershed.

Travel to make babies. It’s a pretty foundational principle of procreation.

But humans had to complicate things. We birthed impossibly dependent babies that stayed helpless far longer than any other animals’ offspring, and we became programmed to nurture, to tend, to need each other. We created intricate social structures, interdependency, emotional attachment. How were we supposed to get far apart enough to mate safely, to ensure the mutations that would lead to increased variability and strength, rather than the dangerous effects of an insular community?

Enter the teenager, a creature designed to cast out on its own to points unknown, with a particular penchant for pushing away the very people it has depended on most for the past decade and a half.

***

We’re spending a few days at our family cabin on the Deschutes River in central Oregon. It’s on the site of an old perlite mine, where several buildings were converted to a fishing camp after the mine closed in the 1940’s. My husband’s grandparents happened across the place when the mine office building was up for sale, so we have access to a ranging two-story box in the desert that can hold more than a dozen people comfortably. It’s just the five of us this weekend, though. My husband, our two kids, and our babysitter, here off the clock to explore this place she has heard so much about in the years she’s been working for us.

On the far side of the river—you have to take a cable ferry to get here, with everything you need for however long you’re staying—with no internet or cell reception, and stone’s throw from the shriekiest mile of curving railroad track in the West, it’s a love it or hate it kind of place. It’s fiercely cold in the winter, and impossibly hot and dry in the summer. In late spring and early fall, it’s mild and lovely. In April and September, it’s all those things in the span of an afternoon.

Adara’s on the hate it end of the spectrum, but we ply her with salt and vinegar potato chips and let her smuggle her phone over the river so she has her music, and she puts up with it. And every couple days, I manage to get her out for an explore. Every teenager who has come of age here—except maybe my introverted fisherman of a husband—has had a period of hating the place, hating the spiders and bugs, hating being away from friends and stuck with family, hating, over the past decade, the prohibition on technology, which doesn’t really work here anyway. But they come, and they are forced outside, and they learn to take care of the place; eventually keys pass from the hands of one generation to the next. Corwin, my 11-year-old, loves the place still. But given her druthers, Adara would take a pass altogether.

***

A quick Google search on “evolution as risk”—looking to see if any researchers have asked whether evolutionary steps can be viewed as a species-level gamble—tells me I need to spend more time on research if I want to follow this trail any farther. I find hits on Darwin’s Dangerous Idea—the threat posed by the mere concept of evolution to the human understanding of our roots, when the theory first arose—and the evolution of risk, with lots of sub-articles on the evolutionary role of adolescence. And that’s part of what I am talking about here, of course, but my bigger question is about the gamble of mutation itself. Why evolve at all? Why not just stay the course?

A species grows from the mire, defines itself, settles into a niche. All is fine, if not terribly exceptional, to be a lizard crawling around on the ground. Everything is working, comfortable enough. But then one day a cold wind blows across your scales and on some cellular level, some strand of lizard DNA buzzes awake and—bam—scales grow into feathers, feathers grow longer, lizards spend more time on the edges of cliffs, lots of them fall off, and the once stable ground-lizard population is suddenly on the brink, life is a lot more dangerous. And then, one day, instead of falling, a lizard flies. And so we have birds, which never would have come to be if there wasn’t space for just the right mutations to build on themselves, improvising, stretching, changing.

***

“I can’t do it, Mom!” she shouts, after her third attempt at a handhold tumbles down the bank behind us. We’ve been climbing for about half an hour now and, despite frequent breaks, we’ve gotten through the hardest section. It’s grassier here, less rocky, and I notice that there’s a trail beaten by deer that traverses the slope off to our right, taking a gentler approach to vertical gain, following the contours of the hillside rather than heading straight up.

“You’re doing great, look how far we’ve come!”

She turns to look down, scares herself with the sheer drop, and turns back, crossing her arms and harrumphing again. “That scared me. I can’t do it.”

“Well, we can’t sleep here, can we?” I ask, attempting the light humor that will sometimes snap her out of recalcitrance. “And look, there’s the tree we’re heading for. We’re almost there. Look, you’re the leader, and you’re doing a great job, so I want to show you two choices. Either one is fine. We can keep going straight, up this way,” and I point to the rocky draw she’s been following, that traces a straight line between us and a budding oak tree. “Or, we can follow this sneaky deer trail that’s an easier path. I know it looks like it’s going the wrong way, but it twists back around, I promise.”

***

And what greater metaphor for this moment of improvisation, of leaving behind the cozy, safe, necessary known for some new dimension, than human adolescence? A risk-taking, precipice-walking, edge-living phase of our development carefully designed to carry us away from our community, out to points unknown, to mix with others and create new family lines. With the skills, knowledge, and strength to set forth for new spaces and places, but without the wisdom to worry so much about what’s coming; the power to plunge straight ahead to the next thing, without the discernment to think maybe there’s an easier way, around the corner, just out of sight. In order to survive babyhood, we needed to create the attached family unit. But in order to thrive as a species, we needed to find a way away from each other, a vehicle to spread the wings and sow the proverbial wild oats further afield.

***

True to form, Adara insists on heading straight up the draw, not interested in my advice about a so-called easier path. She’s tired now, and can’t make it more than a few steps at a time before she needs to stop and catch her breath, rest her shaking legs. She can see the tree, with the picnic rock next to it, and she’s confident in her knowledge of the best way to get there. Straight. Up. The. Hill. Though the pauses between pushing upward grow longer with each break, push herself she does, and we make our way slowly up the slope.

“MOM, I NEED your hand.”

“Kiddo, if I hold your hand, I’m going to pull you down the hill. Here, I’ll just hold your hi-“

“Fine, I CAN’T DO IT!” And she plunks back down, lifts up her butt to toss a sharp rock out from under her. It just misses my kneecap. “And I’m not a kiddo. I’m THIRTEEN!”

I take a deep breath and look out over the river. We’re so close to the top, where we can sit on a flat rock and eat the salt and vinegar chips and sing songs and tell stories and build fairy houses in the dust on the side of the old mine road while we wait for the rest of the crew to come down the mountain.

I just need to keep my mouth shut, and we’ll get there.

As a teenager with a developmental disability, my daughter perhaps inhabits the brink more precariously than others; she toggles in an instant between a deep dependence—still needing help to zip a zipper, tie a shoe, sneak a pee on the side of a mountain—and a fierce desire to do it her way, on her own, without interruption and condescension. But, then, the more I talk to her classmates’ parents, the parents of so-called typical children, the more I realize that it’s only really a difference of degrees. All the kids her age are doing this dance. She just does it a little more transparently. And she needs a little more help to get free of me.

As we push on up her chosen path, my thoughts continue to circle on this idea that as a species, we have banked our survival on this risk-taking phase of human development. And as we stop again, angry at a piece of sharp grass that pokes into the sock, I remember something our midwife said, back when people were still saying things to try to make us feel better about Adara’s Down syndrome diagnosis. Something about how there are people who believe that Down syndrome—a genetic mutation that causes a triplication of the 21st chromosome, rather than the typical duplication, and the most survivable trisomy, as these triplications are collectively known—is the next evolutionary phase of the human species. That the emotional intelligence that is a common trait in Down syndrome is exactly what we need to survive the challenges in front of us right now.

I never looked the theory up back then, to see if she was just blowing smoke to make us feel better. And now I suspect any discussion of the theme will be rife with stereotypes and platitudes about Down syndrome—about how “those people” are happy all the time, and are pure love, and are just perpetual children who have found some stash of joy and contentment that we should all learn from.

But watching my kid choose the hardest path with a force and determination that I could only hope to attain, I have to wonder. No, she’s not happy all the time. She bridles at her little brother just as much as any 13-year-old should. No, she’s not a forever-child. She’s determined to finish school, go to college, and live in an apartment without her boring parents and their annoying rules and chores. But her joys are deeper than just about anyone I know, and she doesn’t carry a grudge. She has a gift for finding lonely people and bringing them into the circle, and for making them laugh with bad puns and absurd knock-knock jokes. She navigates life’s most challenging moments with a resiliency we all should envy. Maybe we could all stand to move that way after all, or at least to weave a little of the ways of that bonus chromosome into our dealings with ourselves and each other. Perhaps we’ve achieved a place as a species where we can choose some of our next adaptations. Choose to weave a new way.

A new thought to ponder. Luckily, there’s plenty of time for thinking on these hikes we take together.

Abby Braithwaite lives in Ridgefield, Washington, where she writes from a converted shipping container in the woods overlooking the family farm. She enjoys the soundscape of sandhill cranes, coyotes and freight trains trundling from Portland to Seattle underneath her bedroom window. Her essays on parenting, escape, and disability have been published in the Barton Chronicle, the Washington Post, The Manifest-Station and the Hip Mama blog, as well as a handful of non-profit newsletters. In 2019 she created “Contained”, a chapbook of her collected musings. She shares her home with her husband and two children, three cats, and two dogs.

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emma

Stories of parent/child relationships can be complex, and Emma’s Laugh, The Gift of  Second Chances, is no exception.  Convinced of her inability to love her “imperfect” child and give her the best care and life she deserved, Diana gave Emma up for adoption. But as with all things that are meant to be, Emma found her way back home. As Emma grew, Diana watched her live life determinedly and unapologetically, radiating love always. Emma evolved from a survivor to a warrior, and the little girl that Diana didn’t think she could love enough rearranged her heart. In her short eighteen years of life, Emma gifted her family the indelible lesson of the healing and redemptive power of love.

Read Diana’s ManifestStation essay here

Order the book from Amazon or Bookshop.org

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Anti-racist resources, because silence is not an option

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Click here for all things Jen

Guest Posts, parenting, Special Needs

The Art of Acceptance

March 15, 2021
jessica

CW: This story contains outdated, culturally insensitive references to individuals with developmental disabilities. Prior to the 1990s, the term ‘’mental retardation’ was used to describe individuals diagnosed with low IQ.

By Cathy Shields

“Your daughter Jessica is profoundly retarded.”

The string of words yanks like an invisible chain, back to that moment in 1988 when the doctor made his decree. Those five words launched a journey I struggled to navigate for twenty-four years. Today I face what awaited at the end of my passage.

I stand in the middle of Jessica’s bedroom. Everything appears the same as yesterday; the same, but different. An assortment of posters hangs on the wall above her bed, most of them, images of the band, the Backstreet Boys. In one photo, the five boys lean forward, arms linked. They smile, and for a second, I imagine they can hear me. I whisper the words like a well-kept secret.

“We moved Jessica to a group home today.”

I turn my attention to the posters Jessica told me to bring. My fingers tremble as I grab the edges. I wonder whether my heart will crack into a million little pieces, like the broken keepsakes she has refused to throw away. Jessica often followed me around the house and repeated the same questions. “Mommy where we go today? Mommy, what we do? Mommy? Why you no answer me?”

What if we made a mistake moving her? Thoughts teeter like a seesaw. We should have waited. What if she doesn’t like it? What if she thinks we’ve abandoned her?

“You’re making that face again.” My husband Chip stands in the doorway. “I can tell what you’re thinking. The staff at the group home said they’d call if there were any problems.” He folds his arms across his chest. “We were supposed to wait a few days. You’re going to call anyway, aren’t you?”

I shrug. “Sorry, I have to.” I grab my cellphone and dial. Two rings later, Nina, the house manager, answers.

“Hi, it’s Jessica’s mom. I know you advised us to wait a few days to call, but can I speak to her?” The words leap from my mouth as if they possess a mind of their own.

“Yes, Mrs. Shields, but we want her to adjust to the new environment. Can you wait? I promise she’s fine.”

A long silence follows. I’m not sure whether to wait or hang up. When I don’t respond, Nina sighs. “Okay, I’ll get her.”

Seconds tick by until I hear Jessica’s voice.

“What you want Mommy? When you come here?”

“Um, I’ll come soon. In a few days.”

“You forget my posters? You say you bring them.”

“No, I didn’t forget. I started taking them down.”

“Okay Mommy. I love you. Bye.”

I hang up the phone and stifle an urge to cry.

“So do you feel better now?” Chip uncrosses his arms, a tiny smile peeking through his graying beard. His green eyes are like beacons calling me home. “What are we making for dinner? It’s getting late,”

“I’m not hungry,” I murmur. “Go ahead and grab something. I might be a while.”

“Are you still worried? Nina just told you Jessica’s fine.” He waits for me to respond and when I don’t answer, he says, “Okay, fine. Do whatever you have to. I’ll be in the kitchen.”

A rumpled pink bedspread covers Jessica’s mattress. I sit, pull her pillow close to me, and inhale. Faint traces of her vanilla-scented shampoo remain. Chip doesn’t understand. He didn’t spend years worrying about how to make Jessica normal. It seemed easy for him to accept. Why couldn’t I?

Stacks of empty video boxes, loose CDs, magazines, and crumpled pictures are scattered over the top of Jessica’s nightstand, and when I straighten the hodgepodge of items, I spot my favorite picture, a photo of me and four-year-old Jessica. In the photo, we smile at the camera. Her saucer-like blue eyes sparkle with childlike innocence. Silky bangs frame her face and her blonde hair cascades like a waterfall of curls. People often said she should be a child model. If things had turned out differently, it could have happened. My finger traces the curly lines of the embossed silver frame. I had insisted Chip take that picture. To mark the occasion.

I slide the photo from the frame and turn it over. In blue ink, I had written the date. April 5, 1988.

Dr. Morgan, the neuropsychologist who headed the program, met with us. He made his pronouncement. My mind reconstructs the scene. Snippets of details; the cold room, the red leather chair, the click of a pen, the tears. The meeting ended. Chip clasped my hand and led me away from the shards of broken dreams. I remember the way Dr. Morgan rose from his seat as I swept past him and headed into the hallway. For one split second, my mind had conjured an entirely different scene. What if I could change the ending? Then Chip opened the door to the children’s activity room. Jessica saw us. Her eyes lit up. She pointed and beamed at us. “That my Mommy.”

The woman beside her, clad in pink scrubs, laughed as Jessica tugged on her hand. “I’m Carol,” she said, “one of the nurses here. Your daughter is so sweet and adorable.”

A second nurse sidled up and stroked Jessica’s hair. “She certainly is. She’s angelic.”

I nodded, barely able to look at Jessica. Perhaps I would never see her the same way again. What then?

Carol touched my shoulder. “Oh, please don’t cry. So many kids come to our center, but your daughter is special. Perhaps she arrived in your life to help you. They say the Lord works in mysterious ways.”

I hated it when people said that. It sounded so condescending. Jessica held up both hands. “Up, Mommy. Pick me up. We go home?”

“Yes. Daddy and I will take you home.”

I remember how I held Jessica, pressed my face against her cheek, and inhaled the fragrance of her skin. A precious, heartbreaking moment. How could I live with the fact there was no cure for her irreversible brain damage?

*

Chip pokes his head through the bedroom doorway. “Didn’t you hear me call you? You’ve been in here for over an hour. Dinner’s ready. Come and eat.”

I steal one last glance at Jessica’s photo before I return it to the nightstand. It might take the rest of my life to learn the art of acceptance.

Cathy Shields is a retired educator with an M.S. Ed in Exceptional Education. She is a member of the South Florida Writers Association and a member of the Memoir Writers Circle. Her short stories have appeared in Ariel Chart International Literary Journal, ’45 Magazine Women’s Literary Journal, Flash Fiction Friday, A Story in 100 words, Spillwords and Variant Literature. Her work “The Phantom Ovaries” was nominated for the Pushcart Prize in 2019. Cathy resides in Miami, Florida where she and her husband raised their three grown daughters.

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A book about tears? Sign us up! Some have called this the Bluets of crying and we tend to agree. This book is unexpected and as much a cultural survey of tears as a lyrical meditation on why we cry. 

Pick up a copy at Bookshop.org or Amazon.

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Anti-racist resources, because silence is not an option

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Click here for all things Jen

Guest Posts, parenting, Special Needs

Touch Down

January 13, 2017
down

By Angela Dawson

Larry was making the most of his freedom.

After three hours cooped up and airborne, he relished the opportunity to stand on his own two tottering feet. My husband queued at the hire car counter; Larry wandered wherever he fancied. We took turns, his siblings and I, being his shadow. We held a hand, or let him roam free, always one step behind.

As I scurried after him, I caught sight of John and his mother. We’d met on the plane earlier. Inveterate travellers, they’d spent seven weeks in Australia at the start of the year. They’d feared the marathon flight—he gets terrible pain in his back if he sits too long—but being chair-crammed for twenty-four hours troubled him none.

Each year, they visit The White Isle to spend time with the mother’s cousin who, decades before, came for a spell, fell in love and married a native Ibicencan. After his death several years ago, a Brazilian captured her heart. The cousin and the Brazilian used to run a farm, but now cherish the space and the slowed down pace. It sounded idyllic. Continue Reading…

Autism, Guest Posts, Special Needs

The Seventeenth Ring

October 6, 2016
autism

By Jayne Schroeder

His small hands, the only notice of what was to come; tiny fists clenched tight and shaking from the sudden storm of rage brewing inside. The yelling, incoherent screams of anger. His hands, now unclenched, his index finger waving wildly, signifying blame to an unknown source an arm’s length away. I wonder just how bad it will get this time. How long will it last and how will it end? I complete a quick scan of the room looking for possible items in his path I fear cannot be replaced. I catch sight of his iPad and my laptop, and I send a silent plea to the Universe. I make a mental note of the blue cup of water on the coffee table, but that’s the last thing I’m thinking about. It’s just water.

My third child was born with an extra twenty-first chromosome on Earth Day, seventeen years ago. It’s not lost on me that his love for every animal and human on this planet is given equally and unconditionally. There is an innocence so breathtakingly beautiful with the living out loud approach he takes in life. He is not self-conscious; the polar opposite of most typically developing teenagers, what you see is what you get. Contrary to the most popular of pre-conceived notions regarding Down syndrome, he is not happy all the time. He is human. Just like you, his emotions run the full spectrum. He does not think twice about letting you know what he is feeling in any particular moment. It can be both beautiful and painful to watch. Continue Reading…

Guest Posts, motherhood, parenting, Special Needs

Down Is Up: On Parenting a Child With Special Needs.

November 6, 2014

beauty-hunting-jen-logo-blackBy Anna Yarrow.

My daughter stands in the middle of a shallow pond, yelling, “If you love me, come and get me! Do you want me? Do you care?” I rest in a patch of shade, watching hordes of children and chaperones traipsing over a wooden bridge; an epileptic girl who fainted at the old schoolhouse, her face weary, limbs floppy in the aftermath; hearing-impaired students in red t-shirts, marching single file, absorbing this living-history museum with their turbo eyes, fingers dancing shadow puppets between them.

“Fine then Mom! I guess I’ll have to stay here . . . Forever! . . . Way past midnight!”

The tremor in her voice tells me there’s sand itching in her socks. Cicadas buzz in the cottonwood trees, volume cranked to unbearable. A canker sore stings her gums. Lunch uneaten. All factors tipping us towards melt-down. A teacher calls, “Time to go, kids!” I wave at the 2nd grade class as they jostle back to the bus. A boy asks, “Why does she get to stay in the water?”

I drove my daughter separately, in case she got wet and muddy, or needed to leave the field trip early. Water usually calms her, but today she’s rocking, hands in tight fists, moaning, “You have to come get me . . . “

I peel off my boots, roll up my jeans, and approach her, soothing, “It’s okay . . . I do want you . . . Please, let’s go.” She grabs my waist and holds tight, pretending she can’t walk. Words like ‘manipulation’ and ‘discipline’ flash across my mind (residue from my spare-the-rod-spoil-the-child upbringing). I’m triggered by her anxious questions: what is love what is want what is care?

She’s silent when I say, “I love you.” (But at least she doesn’t reply, “I don’t love you!” like years past.)

I escort her through heat and blowing dust, and “I’m tired!” towards the parking lot. She asks, “Can we can stop at the library on our way home?” I agree, and remind myself to breathe.

Reality feels slippery after a tantrum. Memories of previous episodes conglomerate in my ribcage, taunting: out-of-control! I judge the day’s events while driving. Pond, yelling, and desperation. Mother frazzled and inept. I give my daughter a carton of almond milk, and fumble the radio, finding her favorite country music station.

Yellow lines blur around a sharp bend. Oncoming vehicle red or orange spooks me and I swerve my Jeep off the road. Slow motion skid on dirt, hello sagebrush, windshield shattering. We’re crashing, tipping, rolling. My arm reaches out to protect her, and I promise, “WE ARE OKAY. WE ARE NOT HURT.”

And she believes me.

Hanging upside-down like bats. My legs pretzel the steering wheel. Engine sounds wrong, so I turn the key. Undo her seatbelt. She falls to the ceiling, surrounded by nuggets of turquoise glass. I say: “We had an accident, but we’re safe!“ She glows with surprise and says, “That felt like zero gravity!” I wonder why I don’t feel sorry. Why we’re not crying. Why all of this feels right somehow.

Continue Reading…

Guest Posts, parenting, Special Needs

Before You Judge Me.

October 8, 2014

beauty-hunting-jen-logo-black

By Rachel Pastiloff.

When you are out in the world, be it at a restaurant, grocery shopping, driving in traffic, or at the doctor’s office, and you see a child screaming and a mother losing her cool and grabbing that child by the arm and being stern: BE CAREFUL BEFORE YOU JUDGE THEM.

Be careful placing judgment upon others, for you know not what battles they are fighting.

Before you judge me, or anyone. Take a breath. Consider what you might not know. Look inward. Look outward. Whatever it is, realize this: you may never have any idea of someone else’s story, so judging them is a tricky business.

Continue Reading…