This Blind and Deaf Drummer Refuses to Accept Limitations

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Vaughn Brown is deaf and blind. He’s also a percussionist and music educator.

Brown, 27, lost his hearing when he was less than a year old to a life-threatening illness, according to The Columbian. Then, at age 4, he began losing his eyesight due to a genetic condition. Despite all the physical challenges he’s faced, he continues to pursue his passion for music. In May he graduated from the prestigious Berklee College of Music in Boston and is currently teaching private music lessons in Vancouver, Washington.

Disability is something every single individual on this planet has,” Brown says in the video below. “When it comes to physical as well as mental limitations, it’s something that society has taught — that you are limited. I would first ask yourself, ‘is this physical challenge really holding me back? Or is it the attitude that this physical challenge is holding me back?’ Which one is it?”

See more of Vaughn Brown’s inspiring story in the video below:

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Watch This 5-Year-Old Deaf Boy Hear His Mother’s Voice for the First Time

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David Orekhov, 5, has autism and is also deaf, according to KMBZ News. Recently, his family made the decision to give David cochlear implants.

A cochlear implant is a small electronic device that, after being surgically implanted under the skin, can help provide a sense of sound to people who are severely hard-of-hearing or deaf, according to the National Institute of Deafness and Other Communication Disorders.

In the video below, David’s mother, Elizaveta Kolbert, talks softly to her son as he experiences sound for the first time in his life.

It’s going to change his life completely,” Kolbert told KMBZ. “I already see it.”

Watch the moment in the video below:

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How We’re Weathering the Storm of Our Children’s Terrifying Diagnosis

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She laid back on my lap, shirtless and limp, her torso pressed against mine, her skin warm under my hands as I rested them on her soft baby skin, trying to keep her from slipping off my lap. We’d been in the doctor’s office for hours at an appointment we’d anticipated for well over a year. We had no idea what to expect, no idea what was quietly waiting for us inside pandora’s box.

The doctor, a small elderly woman, silently examined every part of my sweet girl. She looked at her in ways I’d never seen anyone look at my child, overturning every piece and part of her until her body was memorized as deeply as the medical records that sat before us. When she was satisfied with her assessment, she stood up and walked across the room. She faced the wall for a few moments, again silent. I was still unsure what to expect, but the moment was starting to build within me. It had been clear over the first three years of our daughter’s life that something was simply not allowing her body to do what bodies should naturally do. But all of our paths to hopeful answers had only led to dead ends and more questions.

A few moments passed before the doctor returned to where we sat. She placed her hand upon my daughter’s unclothed thigh and gave it a gentle pat. “Here it was,” I thought to myself. Another specialist with no idea, just a patronizing pat and a lollipop for the little one. Just as I was about to dress my sweet girl and pack up our diaper bag, the doctor placed her hand on my shoulder. She looked me in the eye, sending an instant chill down my spine.

“I think your daughter might be suffering from something called mitochondrial disease,” she said, her gaze still burning into my eyes. I stared for a moment, unsure of what was going on, unsure of what to say, unsure what it was she was even saying.

“I’m sorry, what?” I turned my sweet baby around to face me, pressing her cheek to my shoulder, as if protecting her from hearing the words “disease” could somehow stop her from having one. She began to whimper slightly from the sudden change of atmosphere that now filled the room.

“Mitochondrial disease. It is a metabolic disease. It is quite complicated in nature, difficult to test for, but your daughter has a lot of symptoms of the type of progression and organ system dysfunction we tend to see. We will want to start running some panels of labs, I will give you a letter for the emergency room and…”

“How sure are you that she has this?” I cut in.

She paused, taking a moment to think, quieting her voice. “As sure as I can be without the testing.”

My mind trailed off. I didn’t understand what any of this meant. I’d never heard of this disease, ever. The last time I had heard the word mitochondria was in biology class in high school, and I was too busy passing notes back and forth with my boyfriend to even color the cell diagram in correctly. What could this thing even be? If I hadn’t heard of it by now how bad could it possibly be?

“Mommy, go, now!” My sweet girl began arching her back trying with all her might now to break the tension and silence, to go back from where we once came.

“Hang on, baby,” I said adjusting her again on my lap. I was trying so hard to formulate some kind of question, to reason with myself to say something that would put together my thoughts and make sense of this, but how do you know where to begin when you have no idea where you are even going?

“It’s genetic,” she said cutting the silence. “It is passed with a 25 to 50 percent rate, depending on the inheritance type.” The air got even thicker. I still didn’t know what we were dealing with, but I knew a few things. I knew my daughter was struggling quite a bit. I knew her doctors were worried. I knew her body systems were getting stressed more and more as she got older and she was picking up more and more systemic problems every year, and I knew this doctor was saying it could happen again. Then it hit me — where she was going with this — and her words hit me so hard the wind knocked clear out of me.  “You told our genetic counselor that you are expecting again, and that you are in your first trimester.  We don’t like telling parents these types of things, but we can get a rush on some of her testing so that you and your husband can consider aborting if she does have it.”

I couldn’t breathe. I put my hand on my stomach and opened my mouth. I tried to make words and couldn’t, the air falling short of my lips. I pulled my daughter a little tighter as my heart began to beat faster. Her words emotionally threatened not only the life of my unborn baby, but also my sweet girl, because it was at that very moment I realized just how serious this unknown disease must truly be. For a doctor to even consider suggesting a parent question the ethics of possibly bringing another child into this world, I knew we were facing possible devastation with not only one but two children.

The answer would come later that year for our daughter. She did in fact have mitochondrial disease; so does our son, who was born just seven months after we heard those words leave the doctors lips. It is every bit as devastating a disease as we could have possibly imagined, only more.

There was a lot that doctor could have explained to us that day, but she never could have told us the truth of it. She never could have told us we would spend so many sleepless nights holding them in hospital rooms wondering how many more birthdays they would get.  She never could have told us we would spend months working tirelessly on developing skills that other children would learn naturally, only to watch them lose them again after simple illnesses. She never could have told us we would have an even more tremendous hope and joy of seeing them achieve. She never could have told us how we would learn to renegotiate every single priority, expectation, appreciation until we would find ourselves discovering unimaginable joy in just the feeling of our child’s skin.  She never could have told us the sorrow we would feel as our friend’s children were laid to rest, as we watched them weep with empty arms and broken hearts. She never could have told us the fear we would have, knowing that one day this beast would also likely claim the lives of our children. I suppose she could have told us, but we never would have understood.

Mitochondrial disease is a constant weathering of the storm. It’s roaring winds and weeping waters. It has a cruel and destructive path. It has been dark and raining for far too long. We’re waiting for a ray of light, a glimpse of a rainbow, the sun peeking from behind the clouds. We’re standing here with an umbrella made of prayers and only hope to keep us floating, waiting desperately on a cure.

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This post originally appeared on Learning to Let Go: A Different Dream for Us.

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How My Son Taught Me About Joy With a Piece of Bread

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I have a son with autism. Most days I forget. He’s just my sweet boy, and he’s so delightfully fun and tender that I completely forget there’s anything different about him. Then there are the days when every single thing is a hard fought battle — days when I’m ready for bed at 11 a.m., days when I simply don’t know how to parent him. Yet, like Emily Colson says, “God doesn’t give all the autistic children to parents who are special-needs teachers; sometimes he gives them to the rest of us.”

Why? Why do mothers like me get children like Mareto? I don’t say that in a whiny tone… I say it with awe and wonder. How did God look down on me and find me worthy of a son like him? I don’t know the answer to that, but I do know that Mareto is a gift — a rare and precious gift for our family. Mareto gives us things we’d never have without him, and he teaches me about the important things in life.

One of the most important lessons Mareto has taught us is joy. He’s taught us to experience true and abundant joy in the little things. Like the time John, Mareto and I were sitting in Carabas for dinner. John and I were talking and eating the amazing bread that comes complimentary to every table. We gave Mareto a piece to play with so he would be occupied for a few minutes. He was poking holes in it and tearing bits off to feed us and occasionally throwing some on the floor. He was being quiet so we just let him have his fun. Then all of a sudden I glanced over to see him take a bite and not immediately spit it out. As I watched, he worked the bread around in his mouth, swallowed it and then took another bite. My eyes welled up with tears, and I felt the golfball-sized lump in my throat. I looked up at John to see tears in his eyes as he watched his son eat bread. For the very first time. Tears of joy. We looked at each other and laughed as we wiped our cheeks dry. Who would have thought I could experience so much joy over a 2-year-old taking bites of bread? Oh, but we did. We giggled and smiled our way through that whole dinner. Joy is contagious, and Mareto had a blast through dinner as well.

Then there was the day I casually opened up Mareto’s sensory toys bin. Usually he plays with the different textured balls or the cars that make different noises. This day he took the rubber textured blocks out one by one. I watched as he placed the first block on the coffee table, leaned over and grabbed another block and placed it on top of the other. I watched him do this four times until he had a little tower of blocks. I was almost breathless while he was working, but when he finished and looked up at me, I smiled bigger than I knew I could, cheered his name and clapped my hands. His mouth spread into a wide grin, and he knocked the blocks down to do it all over again. I wiped the tears from my cheeks and prepared to cheer him on as long as he wanted to stack blocks. The joy in that moment was spilling all over the house. To an onlooker this might seem odd and a little deranged. But it has been months of us trying to show Mareto how to stack blocks… and then all of a sudden he just does it like he’s been stacking blocks forever. Joy.

Mareto has taught me how to have overwhelming joy in life’s littlest things. Without him I would take so many things for granted. All mothers get teary and joyful when their baby says their first word. But how many mothers get to experience that same level of joy over a year later when a toddler finally utters his fifth word? Every day with my family is a blessing and cause for celebration. But how many of us wake up each  morning so happy to see each other that we literally giggle with joy? Not many… but Mareto does. When his sister, Arsema wakes up and Mareto realizes this, he lets out the sweetest giggle and kisses her, then hands her a toy.

Mareto can teach us all about how to really enjoy life… even the littlest moments.

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This post originally appeared on LaurenCasper.com.

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Captain America Surprises His Biggest Fan in the Hospital

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Kenny Botting, 9, is undergoing treatment for a brain tumor at Massachusetts General Hospital in Boston, CBS News reported. On Monday, Kenny got a surprise from his favorite superhero.

Chris Evans, the 33-year-old actor known for playing Captain America onscreen, stopped by to visit Kenny. Evans, who’s from nearby Sudbury, Massachusetts, hung out, took pictures and signed autographs for his little fan.

It’s their strength that gives me strength,” Evans told CBS. “No matter what hurdles are in my life it’s nothing compared to what these families go through, so any way I can bring a smile it’s worth it.”

Watch Kenny meet his idol in the video below: 

 

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This Illustration Used To Make Me Break Down. Not Anymore.

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unnamed (67) The first letter I opened after returning home from three weeks in the hospital was from the Cystic Fibrosis Foundation, asking for the continued support of the organization. In the envelope was an illustrated picture of a little girl holding a bouquet of flowers. Sixty-five roses.

“Sixty-five roses” is what children call the terminal illness because “cystic fibrosis” is too difficult to say.

The little girl on the card looked like how I imagine my baby would at this age — big curls, storybook features, inquisitive eyes. It was just an illustration. Not a real child. I hadn’t cried since we were first admitted to the hospital. But something about this cheesy cartoon child gave me permission to fall apart.

At 4 months old, my daughter, Adelaide, weighed less than eight pounds, and her skin was the color of a child in a Victorian portrait. Everyone told us how beautiful she was — a perfect porcelain doll.

As it turned out, that porcelain hue was severe anemia. Her blood work was off the charts abnormal. Something was terribly wrong.

Our first pediatrician assumed I wasn’t feeding her enough. He was of the blame-the-mother philosophy. I explained she was nursing all day. The problem was not with supply. It was all going in, but nothing stayed in. It reminded me of that silly children’s song, “There’s a hole in the bucket, dear Liza, dear Liza / There’s a hole in the bucket, dear Liza, a hole.”

Nothing remained in her body long enough to actually absorb. A hole in the bucket. Dear Liza, a hole.

We left our blame-the-mom doc and took Adelaide to a pediatrician who was known to be the best diagnostician in Santa Monica, California. He took one look at Addie and cancelled all of his afternoon appointments. No blame, no brush off — a real doctor.

He sent us upstairs to a lactation consultant, who after two seconds of hearing my baby suckle said, “A blind person could see that baby is getting enough to eat.”

They took more blood, urine, stool. They poked and prodded and still weren’t sure why she was failing to thrive. We were referred to a gastroenterologist. “But before you go,” the doctor said, “Let’s rule out Cystic Fibrosis. It’s probably not that, but let’s rule out the bad stuff first.”

He made an appointment for us. This was suddenly real. There was bad stuff we were ruling out.

The second I got home I hopped on the internet and looked up the disease they thought my daughter probably didn’t have. Cystic Fibrosis. Isn’t that the foundation that sends me monthly letters with sad stories of children dying? I’d even seen a Movie of the Week in the 1980’s about a little girl whose parents had to hold her upside down and beat her vigorously on the back to dislodge the mucous and blood from her lungs. Her father was the famed sports writer, Frank Deford, and his daughter died when she was only 9. It was one of those conditions where you thank God you don’t have it or know anyone else who does.

But this was the worse-case scenario. The doctor didn’t appear concerned. We were just ruling it out. Just crossing it off our list of “awful things.”

Maybe she had an allergy or blockage — some correctable disorder where, at worst, she may have to take a pill every day or have minor surgery or a special diet. It wasn’t going to be this – – this disease that’s so horrible, the children who have it can’t even call it by its real name.

When I scrolled down to “symptoms,” the breath left my body. Salty skin, failure to thrive, anemia. They were describing my baby. My sweet, napping, salty baby, who had no idea her mother’s heart was being ripped from her body. The median age of survival was 37, but most didn’t live to adulthood.

The doctor didn’t think it was likely, but I knew this was it. This 80’s Movie of the Week terminal illness with a name so ugly they have to cover it with flowers.

A sweat test confirmed it. Adelaide had Sixty Five Roses.

unnamed (66) My daughter turned 9 a few days ago. With respiratory therapy, a bazillion meds and anal retentive parenting, she’s thriving. She’s a swimmer, a surfer and a Girl Scout. That’s not to say Cystic Fibrosis is a bed of roses. Her treatments steal hours out of her day, she has chronic stomach aches and we deal with the real fear that this is still a fatal illness. She’s been poked and prodded and has had more procedures than my 96-year-old grandmother. But she’s here. And she’s funny and so full of life that people do a double take when I tell them she has CF.

When I was 18, I began making donations to the Cystic Fibrosis Foundation, ten years before my daughter was born. And on the day she was released from the hospital, when I couldn’t believe we were coming home to this life, I received a “thank you” from the foundation I had no idea would one day become my family.

Today in an antique store I found an embroidered picture of the little girl — the one with the roses, curly hair and inquisitive eyes. But this time I didn’t break down. After nine years of living life, rather than a diagnosis, I saw a brave little girl looking deep into a bouquet, searching for beauty in a word that’s still too difficult to say.

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