Dear Doctor,

I don’t know where to start…

We’ve come a long way. As you remember, when I was 4, I was diagnosed with autism.

Looking back at it now 22 years later, I can attribute my progress to my work with some of the best speech therapists, the best occupational therapists and the best physical therapists. I was lucky. I thought we had it all…

But than we started working with you.

I remember the first time my mom told me the story of how you two met each other when she had ankle issues that required surgery. She didn’t have time for surgery so you willed the ankles back into place with intensive physical therapy. I get it now. When she was faced with my diagnosis, she wouldn’t accept anything but a good outcome for me, so you made it your mission to help me with intensive physical and occupational therapy.

photo 1 (3) When I first started coming to your office I knew I was a bit challenging, but I could tell how much you cared for your patients. We started working on exercises that would help me with my motor skills and my overall conditioning. When I got to high school, you played a huge part in helping me have the motivation to lose 60 pounds so I could play basketball and make some of the first friends I ever had. Along the way you were there to help with every little injury that came along — not only for me but for my mom and dad. How many mornings did you find me on your doorstep before school needing an ankle or wrist wrapped?

We spent so much time together, and during that time, you had the most positive attitude. When I was going through emotional issues as a kid and started losing motivation towards doing my exercises, we started new ones to try to gauge my interest. You never gave up on me. You reminded me so much of my parents in that you recreated the wheel to help see me progress.

Than something we weren’t expecting happened. You became a part of our family. You weren’t just my physical therapist — you were my friend. You helped me in school and you’d always be there at Christmas time with a gift. I still love visiting your office and catching up with you on anything from politics to college basketball.

The therapy stopped when I went to college, but we stayed close and you remained a huge part of my support system. You helped me land my first-ever internship at CBS Sports. Later, we’d ask you for help with countless scholarships and graduate school, and you were always the first one there willing to help. You helped me grow into a Master’s graduate who now speaks professionally, has a full-time job and has lived independently. 

I can’t thank you enough. Everything I’ve overcame in my life —  academically, physically, socially, you name it — you were there. I can only hope any families out that have a child with special needs have someone as amazing as you to help them succeed. I wouldn’t be here without you.

The spectrum of autism and special needs is so large, and the one thing I hope any therapist can give their patients is something you’ve shown me time and time again.

Your heart.

This one’s for you,


This post originally appeared on

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.


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:

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.

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:

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.

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.


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

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.

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.


This post originally appeared on

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.

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: 


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.

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.