Why I Beg Parents Not to Say This to Kids Who Cry

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Although most people revel in the spring and summer months, warm weather signals the death knell of fun for our family. My boys and I have a genetic skin condition called epidermolysis bullosa simplex, whose hallmark is blistering of the skin in response to heat, friction, injury or rubbing. Warm weather means blisters. Lots of them. Hot days means the carefree running around that the boys and I enjoy in the cold must be once again shelved until the winter months return.

I can handle it. I know my limitations. I know when to say, “No, I can’t do that,” even if I really want to. I know how to be OK with being different. I know it made me stronger — even if it hurt in the process. I know how to compartmentalize disappointment and pain. I’ll survive.

But my boys are 6 and 8, and they can’t yet. Their little hearts and minds aren’t equipped to handle a world in which they have to sit on the sidelines and watch everyone else be full of life. One day, they will learn all the things I already know. They are learning. But these are lessons that most kids shouldn’t have to learn. And it breaks my heart that they have to.

Black and white photo of the author's sons wearing white polo shirts, looking at each other and laughing

Tonight, I had to cut some blisters on Jack’s feet. Really painful ones. Our blisters aren’t the same as yours. Water rushes in to fill the trauma of even minuscule friction, and they will grow to the size of saucers if you don’t cut them.

For reasons too lengthy to detail, I couldn’t get one of them. It took me about 10 minutes. 10 minutes of Jack crying and screaming because that was the only way he could cope. Each time I couldn’t get it, I held him close and told him we didn’t have to do it tonight. And each time, he looked at me through his sobs and said, “No, Mom, I can do it.” We finally did, through my tears and his. As I fished out a Band-Aid, I told him how brave he was. And he said, “But I cried. That means I wasn’t brave.” Because clearly some kid had told him that.

What. The. Hell.

Look, I come from a family of criers. We have happy tears and sad ones. Painful ones and joyful ones. But we have them — a lot. And we embrace them. So I quietly took Jack’s little face in my hands and wiped away the layers of tears and snot. I stared at his beautiful freckled face and told him that tears do not negate courage. Bravery can be as grandiose as slaying the dragon. It can be as noble as giving up your life for someone else.

But more often than not, bravery is simply accepting that your body or mind or heart is overwhelmed by the pain. Or the beauty. Or the loneliness. Or the love. Sometimes bravery is simply blinking through the tears and saying, “No, Mom, I can do it,” even if you don’t think you can.

So I beg you, don’t teach your children that tears are a sign of weakness. For the love of all that’s holy, do not tell them big boys or girls don’t cry. Teach them tears are a sign of courage. That they bear witness, more eloquently than words ever could, to the capacity we have to endure that most cannot bear.

A version of this post originally appeared on Lucky Orange Pants.

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How This 8-Year-Old Is Fighting the Unthinkable Disease That Took Her Sister

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Most 5-year-olds don’t think about starting a blog. Ali Ringgold wasn’t like most 5-year-olds.

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About three years ago, following in her dad’s footsteps, she started her own webpage called “Ali’s Art World!” where she began sharing — and selling — her drawings. It became an effort that on the surface may seem innocent and downright cute. But Ali’s reason for blogging is neither of those things. She shares her art to raise awareness and money to find a cure for epidermolysis bullosa (EB) — the unimaginable, incurable rare disease that took her little sister, Bella’s, life.

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Bella

EB is a devastating genetic condition that affects the body’s ability to produce a protein that binds layers of skin together. Individuals with EB experience severe pain — inside and out — with blisters appearing on the external skin as well as organs. It affects one in every 20,000 births, according to the EB Research Partnership, but Bella experienced a particularly rare case of it, according to her dad, Tim Ringgold.

Ali, now 8, speaks with a maturity of most adults. She’s determined to sell her drawings (she’s sold nine so far) to raise money to support research efforts and therapy trials that will hopefully cure EB.

“It makes me happy to know the money I raise will help kids who have EB now,” Ali told The Mighty. “They will have a better shot of life.”

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Ali’s family is devoted to channeling their grief toward helping other families facing EB and honoring Bella’s memory.

“There are a lot of diseases that I don’t know if they’ll find a cure for during our lifetime,” Tim Ringgold told The Mighty. “But we’re determined to make [EB] one that’s gets kicked off the incurable list while we’re here. I’m pretty sure that will happen.”

Ringgold says his family reminds themselves each day that they have a choice to make.

“With anything that happens, you always get the last word. You get to respond,” he told The Mighty. “I’m a music therapist and my daughter’s an artist, and it helps us make sense of everything. We get to respond to life’s events in a way that we choose. And we always choose to come up with an empowering or inspiring response.”

If you’d like to purchase one of Ali’s pieces of art, head here. To learn more about EB and research efforts, head here.

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This Little Boy May Convince You to Help Cure 'the Most Insane Skin Disorder You Could Imagine'

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“Listen, guys, you should all give money so we can cure EB forever,” 7-year-old Mikey Fullman says in the video below. Hear him out.

Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder that affects only 30,000 people in the U.S., according to the EB Research Partnership. Its symptoms include severe blistering and tearing of the skin, disfigurement and wounds that never heal.

“It’s about the most insane skin condition you could imagine,” Pearl Jam frontman Eddie Vedder says in the video below. Vedder and his wife, Jill, have started a “Cause the Wave” campaign with the EB Research Partnership. Their goal is to raise $5 million for EB research.

In the three-minute video below, Fullmer, Garrett Spaulding and Jennifer Innes sit with Vedder to better explain what their condition is and how important research funds are. Their input is worth your time:

If you’d like to make a donation to EB research, head here

h/t Upworthy

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Why I'm Going to Keep Talking to My Son, Even When He Doesn't Respond

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He remembers the paths we walked last year along the beach and across the cliff-top fields toward the seal rookery. I let him lead. We never get lost.

Each day, he speeds down the beach, twirling two rubber snakes in his hands. I stop trying to keep up but instead hold back to see how far he will really get before he notices I’m not with him. He goes and goes and goes. Do I need to run? No, now he stops. He finds me with his eyes, far back along the beach. He turns back. He never comes all the way to me but just enough so that we are close, walking on together again in the same direction.

I spy a tiny speck of red and black crawling up the sand, and I pick it up to show him. He labels it quickly – ladybug – apparently unimpressed, and moves on.

While he’s close, I point out the dolphins who have arrived again just offshore, their dorsal fins cresting the waves in twos and threes every few yards. I can’t tell if he looks out long enough to see them.

Two rubber snakes spin over every surface along the beach, the road and back at our oceanside apartment.

He declines to come near enough to the surf to see the huge crab claw washed ashore, looking unnatural, as if someone on a dinner cruise tossed the carcass overboard after dipping the meat in melted butter.

My child – who swam nonstop in the freezing water every year before this – won’t go near the waves this time. As we saw before his first surfing experience last summer, he’s uncharacteristically hesitant and unsure at the water’s edge. He still loves to run on the beach, chase seagulls, walk and walk and walk – but he won’t get his feet wet.

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I reassure him that no one will force him – he can return to the water whenever he’s ready. Although I don’t know why he’s had a change of heart, I hope he will love to swim in the ocean again in time. He says nothing until after our trip when we are back home, looking at photos. Then, a song emerges quietly: People swimming in the water, people swimming in the water… shark coming in the water, shark coming in the water…

My son can’t always find the words at the right time, and when the language does come, it is often coded, masked, singular. In order to hear him, I have to take the time to listen. He is speaking to me, in his way.

This break gave me time to practice this listening, to slow down and just be with my son, follow his lead and see where he takes me. It helped me notice what I am often missing in our busy, hurried life – that he is throwing me little sparkling clues to what he is thinking.

Within his daily babble – streaming scenes from his movies or books or games – I begin to hear small words that don’t fit in the script but align perfectly to the situation at hand.  When my mother joins us one morning, I hear the word “grandpa” sneak into his rambling soundscape, and I guess he is wondering where my father is.  With his question acknowledged, he is visibly happy to have been heard. This pattern repeats in other situations – I start to listen more closely to everything we believed was only “verbal stimming” before. Is his awareness and connection stronger this week, or am I just now slowing down enough to hear it?

On the beach, I catch sight of a seal bobbing in the waves just beyond where the boogie boarders float. He disappears and reemerges several times before the swimmers notice he is there. When they finally see him, their attention is newly focused, their experience made brighter, more memorable.  All they can do is watch and wait, let him choose to be near them – if they try to approach or chase after him, he’d be gone.

Each time I hear my child express what’s on his mind – in clips of song or a re-engineered phrase – I catch a fleeting glimpse of all that is just below the surface. In my eagerness, I tend to jump at it too soon, too forcefully, and the silence returns. But if I stay still, listen – float – his words appear.

I returned from vacation recharged to cultivate the patience I need to support my son’s still-emerging voice and to encourage his trust in me as a communication partner. As much as I yearn to know what my son is thinking right now, to have a conversation with him, to ensure that he will be safe and understood when he is away from me, none of these skills come quickly.

It is hard and treacherous work to find the words, and it may take years for him to know the rewards of shared communication. I am finally beginning to understand that just because his voice is not fully here yet doesn’t mean it will never come. If I can just slow down to listen, I can catch glimpses right now.

I will walk the beach with him, following his lead. I will point out what I see, despite his lack of response, hoping he’s soaking in the language he can retrieve later. When he’s ready to look back, I will be here, believing that he understands and desires to know more even if he can’t yet form the questions. I will wait and watch for the creative ways he is communicating – now or in the hours or days later. I will offer what he needs to build his voice: more patience, more time, more assurances that someone will hear him.

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This post originally appeared on Stay Quirky, My Friends.

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The Story of a Little Girl With Cerebral Palsy Who Figured Out How to See the World as Beautiful

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age3 I thought I’d start at the beginning

Once there was a little girl who had cerebral palsy. She came home from school one day in tears…”The other kids stare at me, Mom,” she said.

“They are staring at your strength,” her mom said.

And the little girl believed her mom. The next time somebody stared, she smiled. She knew. She knew they were staring at her strength.

And whenever she fell, she remembered the the words of her dad.

“You can do anything that anyone else can do,” he said. “It just takes you longer and you’ll have to try harder.”

She carried those words with her everywhere, knowing that she could do anything… the strength of her spirit could overcome the weakness of her legs.

When the little girl was 6 years old, she met a little boy. The little boy had ADHD so his brain worked differently too. But just like the little girl, he was perfect just the way he was.

The little girl and the little boy became friends. When the little girl would fall and scrape her elbows during recess, the little boy would wipe her tears, take her hand and walk her to the nurse. And when the other children ran around outside, the little boy sat with the little girl and together they imagined a world where animals talked…. different was OK in this world.

Once, another child said something mean to the little girl about her wobbly legs. She was about to dissolve into tears until she saw the little boy come up behind her. He stood up for her.

And in gym class, when the little girl couldn’t participate because of her wobbly legs, he sat out too, and they played together.

Sometimes the little boy had trouble spelling words and doing math because the letters and numbers would get all mixed up in his head. So the little girl sat with him and showed him how.

One day, the teacher’s aide scolded her. “He is slowing you down,” the aide said. “Don’t help him anymore.”

But the little girl knew. He waited for her on the playground, and she waited for him in the classroom. They helped each other. So, in whispers, she continued to teach him how to use his numbers and letters.

The little boy and the little girl were in the same class for five years… for five years, he helped her on the playground and she helped him in the classroom.

Today, the little boy and the little girl aren’t so little anymore, but they are still friends. And the little girl who isn’t so little anymore will never forget the words of her parents and the kindness of the little boy… she always carries these gifts with her and looks to them whenever she feels lost.

When people stare, she remembers her mother’s words — they are staring at your strength — and she stands a little straighter. When she feels like she can’t do something, she remembers her father’s words — you can do anything — and she tries again. And when she feels alone, she remembers the little boy who took her hand when she fell, the little boy who kept her company and who was there to stand up for her when she needed him.

All she has to do is remember, and suddenly the world is beautiful again.

This post originally appeared on Transcending CP: Shattering the Limits of a Disability.

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This Is How I Feel About 40

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About ten years ago, I watched an episode of Dr. Phil that changed my life.

Well, maybe not my life exactly, but it changed a lot about how I feel about myself, which for most women is pretty much the same thing.

Dr. Phil was talking with a young couple about to get married. The woman was really, really pretty — slender with long legs and a short skirt — and she was worried that as she got older her fiancé wouldn’t be attracted to her anymore, that he wouldn’t think she was beautiful. She complained he noticed other women.

Well, this is going to be good, I thought to myself. I’d been nursing Jack in our old blue recliner, and I settled back into the chair and waited for Dr. Phil to light into the guy and tell him to straighten up, that he had a beautiful girl in front of him and he should stop admiring women who walked by him on the street or in the store.

But he didn’t.

Instead, Dr. Phil turned to the beautiful young woman, and in his Texan drawl he said, “Girl, there is always going to be someone prettier than you out there.”

After that episode, every time I felt fat or ugly or insecure or old or whatever, I thought about that line. There will always be someone smarter and prettier and thinner and younger than I am, so I might as well just get over it and get on with it.

Yesterday I turned 40.

When I think about being 40, I feel a combination of giddiness and relief and joy. I feel as though I’m finally here, like I’ve arrived at some long-awaited destination.

This is my body and this is my face. My feet are long and skinny and my second toe is bigger than my first. I don’t like peas and my favorite color is bright pink. I like to exercise in the morning, and I can’t pass up a video about dancing flash mobs.

I’m in bed by 10 almost every night. And I’m not going to feel bad about that anymore. I’m not going say dumb things like, “Oh, I have to go to bed early because I’m old.”

I don’t go to bed early because I’m old. I go to bed early because I wake up at exactly 5:55 pretty much every day. The first sound I hear in the morning is Jack slamming his drawer after he takes out his clothes. As soon as he closes his drawer, Wolfie starts to bark from his crate. Even on the weekends this happens, because neither puppies nor autism care much about sleeping late on Saturday.

And through the course of the day, I sweat and I kiss and I laugh. I wave to people and I sing with people and I switch the laundry from the washer to the dryer. I argue with Joey about why he should do his homework before he rides his scooter, and I quiz Rose on her spelling words and Charlie on his math facts. I try to teach Henry how to whisper.

I go to bed early because I fully live my day, a day that begins with the closing of a drawer and a short, sweet bark.

To me, 40 means no more apologies.

I’m never going to have six-pack abs. Want to know why? Because I don’t care about having six-pack abs. Research shows that having a washboard stomach has little to do with whether you do Crossfit or Bikram, and everything to do with how many cupcakes you eat on your birthday. (Two, in case you were wondering.)

I choose the cupcake over the abs. I choose this.

Besides, me and my no-pack abs made people. Almost 45 pounds of people – actually, 44.35 pounds, if you want to be exact.

I made a boy who has the same long, skinny feet as me. And he runs like the wind.

I made four brothers and one sister. I made a group of children who are fresh and naughty and funny and alive. And whenever I feel restless or nervous or overtired, I remind myself that I am the mommy.

This statement is so simple, and yet such a profound example of my truth. I am the mommy.

I’m the only person who can do this job, who can teach them what it means to be a family and show them how to fold a fitted sheet and feel their warm foreheads in the dark of the night. I’m the only one who can tell him, “Your autism makes me smile.”

(OK, OK, the truth is at 40, I still don’t know how to fold a fitted sheet. But I don’t care anymore.)

I made a girl who loves peas.

I’ve lived with autism for ten years now. This is a quarter of my life. Twenty-five percent. One fourth. Three thousand, seven hundred and 63 days, if you want to get all spectrum-y precise about it.

And you know what? It hasn’t killed me. In fact, in some ways it has brought me to life. It has awakened every instinct I didn’t know I had. Because of autism, I listen when there’s silence and look harder in the darkness. I hold my breath for each new word, new phrase, new expression. Mom. Wolfie is for me good.

I made a boy who thinks in color. I made Jack.

Lately it seems like I can’t watch ten minutes of television without Oil of Olay coming on to remind me I have crows feet and wrinkles and laugh lines.

And every time I see the commercial I think to myself, laugh lines? I’m going to worry about those? They are from laughing. I smiled and laughed and giggled for each and every line. For a few of them, I laughed until tears rolled down my face.

Besides, both my parents were heavy smokers. I’m lucky my face doesn’t resemble a beanbag chair, considering all the hours I spent in the back of our orange station wagon while they puffed away on their Marlboro Lights and Now Ultras.

img_4727-e1411414682582 I’ll take the laugh lines.

Right about now I think I’m supposed to say something about how I married my best friend. But to be honest, Joe and I aren’t really friends. We weren’t friends when we met and we weren’t friends when we got married and we especially weren’t friends when he ate all those Oreos.

I’ve been married to this man for 16 years and I’ve known him for 20. I don’t want to go showing off with my math skills, but this is half my life.

I married him because he was tender and kind and strong and very, very handsome.

I married him because my stomach did a little flip whenever he walked in the door.

Twenty years later, he’s still all of those things, and my stomach still flips whenever he walks in the door.

And with a lot of laundry and Bisquick and patience and no patience, we propel this little family forward every single day. We do it together even when we don’t feel like doing it together. We argue about it and we compromise over it and we laugh until our sides hurt.

You know what? Maybe we are friends after all. At 40, I’m still figuring it out.

I wonder what happened with the couple on Dr. Phil. I wonder if they ever wound up getting married or having kids. I wonder if she feels pretty. I hope so. I hope she came to terms with the idea of aging.

To me, reaching 40 means going to sleep early so I can watch Jack mix the batter for his beloved waffles in the early hours of dawn, with a round, soft puppy on my lap. It’s rolling the long, smooth sheet into a ball and stuffing it into the closet, because life is too short to spend folding. It’s forgiveness and peace, friendship and marriage.

It’s knowing my truth and choosing the cupcake. Or two, if I feel like it.

This post originally appeared on CarrieCariello.com.

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