mom and two young sons on a balcony overlooking trees

This is what an invisible disease looks like. It looks like nothing at all.

There are thousands of them and they run the gamut from rare to common, physical to mental, life-threatening to debilitating. But they all have one thing in common – they leave no noticeable mark. To the outside world, we all look healthy.

Mine, and my children’s, is called epidermolysis bullosa, a rare genetic disease whose hallmark is debilitating blistering of the skin in response to heat, friction, injury or rubbing. I was encouraged to write something about it for Epidermolysis Bullosa Awareness Week.

Truthfully, I didn’t know what to share.

I don’t have a picture of our blisters. I don’t have pictures of the guttural sobs that come from the pain. I don’t have a picture of my husband carrying my 9-year-old to the bathroom because he can’t walk. I don’t have a picture of the hot shame that washes over my face when someone questions why I parked in a handicapped space. I don’t have a picture of the loneliness that comes from the things we miss out on because of a disease no one has ever heard of.

But even if I did, I wouldn’t share them. Not because they’re ugly or agonizing. But because they wouldn’t be the whole picture.

Yes, this is a terrible disease. And yes, it’s hard. But it’s also beautiful.

Because of it, I had to learn how to be independent at an early age. I had to learn to be comfortable with being different, with being myself. I had to learn to shrug off the things that people think about me. And although it was painful, it made me stronger. It made me confident. It made me empathetic. It made me grateful for the friends who have always been there for me, not when it was convenient, but when it was hard. It made me understand that what a person looks like from the outside is only a fraction of their story.

Or maybe I do have a picture after all. Maybe it’s this picture — my son’s “senior buddy” giving him a piggyback ride so he could participate in his school’s Halloween parade.

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boy getting piggyback ride and photo of group of kids in gym

Maybe it’s this picture — a letter from a University of Virginia basketball coach who is inspired by their perseverance and their kindness.

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The letter says, “Jack, Thank you for being my friend. I admire so many things about you. You are strong, courageous, tough and kind. These characteristics will carry you through life. I love your never quit attitude. You can do and accomplish anything. Enjoy the rest of the summer. Your friend, Ron”

Maybe it’s this picture — a wonderful coach who has given my children the opportunity I never thought they would have — to play their beloved sport like all the other kids — simply because he looks at them and sees what they can do, not what they can’t.

coach watching boys play a game on field

Maybe it’s this picture — two smiling boys who look just like everyone else but fight through unimaginable pain every day. Two boys who understand that tears are a sign of bravery and that not every battle is waged with a sword. Two boys who don’t view every door as closed. Instead, they see the light coming through the keyhole.

two kids smiling while sitting at table together

And all of that doesn’t make the hurt go away. But it does give it a soft place to land.

Yes it’s a terrible disease, like so many others. And yes, it’s hard. Not just physically but emotionally. But it made me who I am. What it has taken from me pales into comparison to what it has given me. And I hope it will do the same for my boys.

And maybe that’s not such a bad deal after all.

For more information about epidermolysis bullosa, go to www.debra.org.

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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

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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.


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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“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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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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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.

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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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